Chronic pain is the largest aspect of living with endometriosis. Someone might know what endometriosis is, but factual discussion about endometriosis tends to leave out the very personal story about how it feels.
Endometriosis pain is so subjective. It feels different for every woman, but we shouldn’t step away from trying to describe the experience of it in our own words.
Everyones experience with endometriosis is different
It’s impossible to talk definitively about everyone’s experience of pain and endometriosis, but it’s important to at least attempt to verbalise our experiences.
Exclaiming that the pain is “horrible” and “unexplainable” is partially true, but it also dismisses potential support from someone who is trying to understand your illness.
Broadly there are several types of pain that most women with endometriosis experience, this is by no means authoritative.
- Abdominal pain
- Back pain
- Leg pain
- Painful periods
- Headaches or migraines
- Pain from fatigue
- Pain from medication side effects and/or treatment
- Emotional trauma
Abdominal pain caused by endometriosis
What follows is just one experience of endometriosis pain. It doesn’t reflect everyones, but will hopefully give some insight.
Endometriosis feels like a ripple of sudden, twinge-like pain. Like the nerves in your abdomen have been singed with a extremely hot tool. This pain stabs the area below the stomach and just above the groin repeatedly, with no obvious pattern. If you need to imagine the pain, think of the raw, sharp pain of a toothache, and imagine that feeling stuck perpetually somewhere (or perhaps many places) deep inside your abdomen.
The pain is often accompanied by a tugging sensation, the feeling that the area inside you is caught somehow, snagged on some unseen surface.
The pain has no pattern, it arrives and leaves as it wants. It can stay for hours, days or weeks on a whim. It can be escaped only by ongoing treatment, and painkillers. Both of which have their own unique side effects, or may only provide short relief to dull the pain.
The pain caused by endometriosis haunts you both in sleep and in waking, tiring your body and causing chronic fatigue.
Crucially endometriosis can hurt a person constantly, or hardly at all. Such is the randomness of the illness and its side-effects. This aspect of the disease is one of the hardest aspects to come to terms with. Ultimately the ripples of pain appearing (and perhaps disappearing) throughout a year vastly effect a woman’s quality of life.
Endometriosis & back pain
The pain from endometriosis can naturally spread to the back of the body. This is normally caused by two aspects of the disease.
- The fact that the womb and ovaries are near to, and indeed compliment the back area.
- The person effected by endometriosis often has to hold herself in such a way to try and escape the worst effects of the pain, causing back pain in addition.
This is complicated further by the fact that the combination of back pain, and abdominal pain makes things like bending, sitting or moving very difficult. At its worst endometriosis causes issues which prevents resting or sitting in a comfortable position.
How endometriosis causes leg pain
This is another cruel issue with endometriosis. The pain from the abdomen spreads down into the hip or leg causing difficulty or an inability to walk. This is due to the fact that the adhesions caused by endometriosis can play havoc with the sciatic nerve. Something as simple as walking becomes a painful, extracted affair of limping and resting.
Painful periods
Most women are experience some pain during their period. This sort of pain feels like a sort of writhing or cramping below the stomach and towards the groin.
Women who develop endometriosis have suffered with extremely painful periods for most of their adult life as a side-effect of undiagnosed endometriosis. They struggle on for years (before endometriosis is diagnosed) in monthly agony. Ignored by doctors, or sent away with only painkillers, there is usually little or no attempt to look at the root cause of their pain.
It’s often (but not always) one of the first signs that something is wrong with a woman’s body.
This complaint is known as dysmenorrhoea, while awful complicates the issue of endometriosis. It does this by:
- Making people think that endometriosis is “just a painful period”
- Equating endometriosis with the “female condition” i.e. “being nothing to worry about”
- Establishing the idea that endometriosis only hurts once a month and therefore “isn’t too bad”.
A common treatment for endometriosis is to prevent a women from experiencing a period by putting her on a constant stream of oral contraceptives, to “trick” her body into believing she is either pregnant or experiencing the menopause. So even women who no longer experience a period, may still feel pain, or worse pain during the time that their body would normally bleed.
The emotional trauma of endometriosis
A frequently overlooked aspect of pain. The emotional toil of managing with endometriosis causes both chronic pain and chronic fatigue in combination.
Living with endometriosis means coping with the following emotional problems:
- Managing with pain that may never leave you
- Having an illness with no cure
- Feeling weighed down by a lack of understanding or awareness
- Realising the ability to have children may be negatively effected
- Struggling with chronic fatigue and its ongoing effect on the body
- Relearning your limits, being unable to do things you once enjoyed or having to do them less often
- Having your key relationships and friendships affected by the disease
- Being unable or finding it difficult to work
- Living with an invisible illness that few can visibly recognise.
The pain isn’t insurmountable and endometriosis doesn’t mean giving up on life, or the things you enjoy doing. The first step to feeling better is talking about the pain it causes, not just the outward symptoms, but how endometriosis feels for you.
Regarding your treatment and diagnosis
I welcome your comments below, and this is by far the most popular page on my website. However I must point out that I am not a doctor and therefore cannot advise on your current endometriosis treatment or whether or not you have endometriosis. Discussions like that are best had with your health professional. You are however more than welcome to share your story with me.
Don’t forget to take a look at my help with endometriosis page for more information about living with endometriosis, and how I use pain management to cope with its effects.
I have been suffering with all these symptoms for over a year and my doctor just said “it’s your sciatic nerve” … Kept going back and have finally been referred to a see a specialist. Really annoyed that I was “fobbed” off for so long !!
Kerri,
I was diagnosed 11 years ago while trying to get pregnant. My doctor performed a laparotomy to remove a tube and ovary that had been affected by an endometrioma. I had a lot of endo and scar tissue is my pelvic area. My doctor prescribed the pill to keep it from spreading. I am now 40 years old and still on the pill. I take seasonale and my doctor said that it’s perfectly safe to take it until menopause as long as I’m a non-smoker. I suggest you find a new doctor, perhaps one that specialized in endo.
I’ve just had my first laparoscopy I was diagnosed with severe endometriosis surgeon was unable to laser it away as there was so much of it everywhere(my right ovary was stuck to my bladder)! I have two choices the pill but because of my age (38 years old) I can only be prescribed the mini pill not the combined bill due to blood clot side effects in older women or the other option is Lupro injections once a month which will make me go through the menopause! Don’t like the sound of either option has anyone tried either of these treatments would be so grateful of feedback. Thanks
Mary,
Lupron is a short-term fix and can have very serious side effects. Please visit Nancy’s Nook or Endometropolis on Facebook and ask your question there too. Loads of women that provide personal endo experiences.
Hello im Kisha ive had endo since i was 13 im now 28 still in pain confused just feel llike its taken overr i ve had two of the luprion shot and im so scared to get the last one plz give some insit on the shot
Hi Kisha, I don’t have any experience of Lupron shots I’m afraid. Perhaps some of my other readers do though. Do you have a local endometriosis support group that you could ask at, or if you’re based in the UK, the Endometriosis UK helpline may be able to talk to you of their experiences. Please be aware that neither myself, anyone here or that helpline cannot give you any medical advice though. So best port of call if you’re concerned is your medical professional.
Hi Mary,
I have been battling severe endo for ~3.5 years now. I have had 3 lap surgeries and the last one ended with a right oophorectomy. I have taken the pill and two rounds of the lupron depot shot. First round of the shot was 9 shots and I just finished my second round for 12 shots. I won’t be able to have the shot for a while since I am still quite young (23 years old), which is saddening, since I find the shot to be the only thing to help with the pain. The most prevalent side effect that I experience with the shot is severe hot flashes, but I will take those over the pain. Hope this helps 🙂
I also forgot to say, I do have a IUD, which I am not too sure how much it really has helped since I have always either been on the pill or having the shot simultaneously. Since I have had all these medications I have not had a period for ~3.5 years.
I am going to be having this surgery within the next couple weeks. I started noticing changes in my cycle last november, and after not having a period for a month and having excruciating pain I went in, the first doctor originally said I was having an ectopic pregnancy, thank god the ultra sound and pregnancy test didn’t show that. They couldn’t see anything with an ultra sound so I was sent home with pain pills. I went back the next week to see another doctor, started a new birth control pill. Went back a month later to another doctor (who I adore!) gave me new birth control and better pain meds. I’ve been in so much pain in my lower back, sharp pain like nerves being pinched. I can’t bend over or lift heavy things and exercising is miserable. And I have left lower pelvic pulling pain that sends sharp pain down my left leg. My doctor said I had two options. a.) take to menopause starting medicine b.) surgery. I’m only 20 years old and being told I may be infertile is terrifying and I don’t want to start menopause! I’m doing the surgery to hopefully save whatever fertility I have left and hopefully relieve some of the pain… I feel like maybe I should attempt to have a kid sooner before it’s too late… I’m a nursing student so of course this all has to happen when I’m busy with finals/boards/internship and what not… I’m so nervous!
Hi Carissa, it sounds like you’re in a good pair of hands. I know it’s really hard to not freak out at the “what ifs” scenarios of treatments, but I’d encourage you to so slowly and take each decision at your own pace.
I can’t advise on your medical treatment, but surgery can be a good path for many women with endometriosis. I too feel extreme discomfort when lifting heavy objects and pain in my legs as I walk so I literally do know what you’re going through and how frustrating it can be to not be able to do the things you once could. Infertility is a real issue for women with endometriosis, but there are some women who are treated early enough (or are undiagnosed) that do go on to start families. It’s not completely hopeless, but it does depend on how widespread the endometriosis is in your pelvic cavity and only your doctor can advise on this to be completely honest.
I was diagnosed at 23, but I’d had symptoms for about eight years before that.
It’s a lot to take in I know, but there’s fantastic support available to you online for living with this illness day by day especially while this is all still sinking in. Do seek us out. The pain does become more manageable if you have the right treatment and support network, and the right tools to empower you.
I feel so concerned for young women facing infertility. I am over 60 now and still suffer chronic pain. I got endo at 18 and had extreme effects, including pulmonary endo and ended up having 7 full laparotomies over the years. My message re children is never give up. I was so bad they wanted to do a radical hysterectomy when I was 25. After 10 years of trying and with only 1 damaged tube and 2/3 of one ovary left I conceived. Had 2 miscarriages but 3Rd time had a beautiful daughter followed by another one 13 months later. I had a hysterectomy after that but still had active endo and complications for years after. But I am so grateful for my lovely daughters. If I could get pregnant then there is a chance for everyone. Don’t give up.
Hello Mary & everyone else,
I just found this forum by accident and thought I would take a moment to share.
My endo pain began when I was 11 yrs old. I am now 43. altogether I had 8 lap’s the first was when I was 13 yrs old and the last when I was 27.
What a nightmare. The pain controlled my life. I am sure many of you know exactly what I mean.
I was given Lupron and Depot Pervera (not sure I’m spelling the latter one correctly). I was about 23 when I started the shots. I was told I could only be on them for a year or two but I ended up getting the shots for 6 years.
The only side effects that I recall were severe hot flashes and a huge amount of weight gain. I went from 127 to 176 in a matter of months. But working out brought my weight back down to 140/145. I did not care about either side effect because I was so happy to have a new lease on life. The pain was totally gone. I was so very thankful for the drugs.
Years after I can say that I do not believe I suffered any long term side effects.
In 2010 I had a partial hysterectomy. I kept both ovaries … after my doc freed one from being wrapped up in my intestine along w/my appendix which he did take b/c there was too much endo tissue to remove. My kidney’s were anchored to my back muscle, my bladder was covered, my lower left intestinal wall was stuck to muscle and so on and so on.
I have had hot flashes, night sweats & mood swings since the surgery. The hot flashes are worse than what the Lupron & Depot caused. But hey, I’m happy to be free of that awful pain again.
I will say that exercise was my worst fear but greatest friend when it came to helping my pain. Keep a journal of foods you eat, when you crave them etc etc and try to determine if any foods seem to make your pain worse. Eat healthy.
I will keep all of you in my thoughts & prayers as this is a most difficult journey and one no woman should walk alone. Be well and take care.
I was diagnosed with endometriosis at 18 after suffering years of symptoms. I started birth control pills at 12 and in my early 20’s I took aygestin for two years and Lupron for one year. It helped some, but the hot flashes and night sweats were terrible and they are something I still deal with to this day. After 3 years of not having my period, my doctor put me on to seasonal birth control, about 3 years later I ended up in the hospital for emergency surgery to have a grapefruit sized tumor scraped out of my uterus. My doctor believed that it was brought on by all the different medications I had been on in the years prior trying to control my endometriosis. Today, I am 31 years old and still struggling with my disease. I have had a couple of really excruciating nights with no sleep because I hurt so much. I am looking forward to a doctors appointment tomorrow to try and figure it out. I wish you luck in your journey and hope you find a treatment that works for you.
Hi Mary I am 19 years old and been going though endometriosis since I was 11 I have been though menopause and the pill both didn’t work my devise to you is , if you go through menopause is don’t its horrible it didn’t help me at all all I can suggest is the pill it’s great and controls it , sorry if this doesn’t help but it’s advise and I hope your sort it.
I started my period around 12 & began experiencing pain & heavy bleeding around 14, often staying home from school. I was finally diagnosed in my early 20s after having surgery for a ruptured cyst, an appendectomy, and a diagnosis by laporoscopy- I was at a stage 2. I was put on birth control, which worked wonders for about 6 months before symptoms returned. Since then, I have tried multiple birth control treatments with the exception of depo provera & lupron shots. I do not disagree with trying/using these medicines as treatment if it works, but I have stayed away because normal progesterone treatments have not been successful & possible lupron side effects scare me. I currently receive pain meds for my monthly cycle & manage the pain outside of that time as best I can with heat & OTC pain managers such as ibuprofen and/or naproxen sodium. I am currently scheduled for my 4th surgery 5 weeks from now; DaVinci robotic endo resection, during which the adhesions will be “cut” out. The hope is that the endo won’t return to the same areas, although it may reappear in other places later. My doc would like to follow up with depo treatments but I am not quite on board with that. Living with this disease, especially if you must deal with the frustrating symptoms on a daily basis, can be taxing- physically, mentally, and emotionally. Life around us doesnt stop moving simply because we arent able to participate. I am 30 years old, raising 3 children ages 5′ 2 & 6 months. My prayers go out to the nearly 5.5 million women suffering with this disease. Many of these women have been snubbed by medical professionals (& a large portion of others- peers, colleagues, and even family), and have been labeled as weak or imaginative, or even worse, pill-seekers, because of this invisible disease. Its frustrating & can make life lonely & make a woman feel isolated- I have often wondered if I am exaggerating my symptoms in my mind because endo is so often mistaken to be “no big deal” or because of how common it is & the variations of the severity of symptoms from woman to woman. My advice is to stay educated & most importantly, IN CONTROL of your treatments. Resist the urge to be pressured into treatment options you arent comfortable with, or allowing yourself to bullied by doctors who may raise questions concerning your motives for seeking pain relief. Be honest with yourself and your doctors about the severity of your symptoms to avoid compounding the problem with unnecessary addictions to pain meds. And if your doctor won’t listen to you, take their time with you, exercise compassion and manners, answer your questions/concerns thoroughly and with patience, or makes you feel uncomfortable, belittled, or ignored in any way (including other staff like nurses), find another doctor! You DO have rights & choices available to you. Do not give up- there IS hope for a better quality of life! Good luck, prayers, and blessings to all who are suffering and feel like treatment & support are elusive pipe-dreams!
Christine ~ thank you for your wonderful post. I am so sorry you’re dealing with this horrible disease. thank you for encouraging others to stand up for their selves. i was called a pill seeker far too many times. as if i didn’t have better things to do with my time or like i didn’t have BIG DREAMS i would have rather been pursuing … no, really doc … i would much rather be here having my dignity & Pride belittled by you. 😉
my mom raised three of us while suffering from endo & so my heart goes out to you but i also want you to know that you, my mom & other moms w/endo are my True HEROINES! 🙂 <3
I did the Lupron injections a few years ago, for a total of five months. I know all patients are different and respond to medications differently. However, I had a really hard time with the side effects. Mostly the hot flashes and mood swings, not slight ones either. I slept very little, and had no patience to deal with my students. I know that both choices seem to have bad to them and I do not wish to sway you towards one or the other. I only hope that hearing some peoples experiences will assist your decision.
I was on Lupron for 5 months of what was supposse to be a 6 month treatment. My doctor cut my treatment short due to knee swelling and knee pain. My endo pain was better but the side effects killed me. My doctor said he had never seen the side effects that I experienced=( On top of that, as I look back on those months I was a totally different person, not myself almost crazy feeling, cant describe it but not a [lace I want to go back too. I know people hav had success with this treatment but more people have suffered. To this day I still have trouble with my knees. I wish we all could find a treatment and not have to be subjected to such turmoil. Hope you find something to help you.
I have always had painful periods, but the pain is mostly in the second day. For about the last one year, i have started having a throbbing pain about 10 days before the period starts. Though the pain comes and gos and varies in intensity from month to month, when it is severe i cant do anything but lie with my stomach in my hand. I went to the doctor, she got a sonography done and said i have no,problem. Gave me a few antioxidants. But nothing has changed with the medicine, and i have a strong feeling that it is endo metriosis. I dont know what to do! Moreover, the sonography report says i have bilaterally small ovares. And the doctor said it cant be so, since i have no symptoms, like underdeveloped breasts, lack of pubic hair, etc.
Hi Sam, I can’t give medical advice. I’m not a doctor – I only have personal knowledge of endometriosis. That said if you don’t feel 100% happy with your treatment then I encourage you to get another opinion. I saw numerous doctors and had multiple scans and examinations to be checked from everything from IBS, PCOS and kidney stones before my symptoms were narrowed down to endometriosis.
It took a concerted effort on my part for about two years to finally get a laparoscopy that confirmed it. I’d been experiencing out of the ordinary pain and fatigue for about 10 years in total, so my confirmed diagnosis made so much sense. I too had horribly painful periods in my teens, ones that used to cripple me for about two days. I couldn’t do anything when it arrived. This isn’t normal, no matter what anyone else says.
I tell you these things not to scare you, but to steel your resolve for what lies ahead – it can take a long time to pinpoint what the source of chronic pain can be – whether that’s endometriosis or something else. You have to be adamant about your pain and you have to keep trying until you find the right person that connects the dots. Keep trying and don’t accept normality as an answer if you know something is wrong.
Hi, I am just looking for some advice, I have just turned 20 and this is my story so far. I started my periods when I was 13 and I have never had any problems, always light, painless and regular. When I was 16 I got with my boyfriend and went on Ovranette contraceptive pill. My periods continued to be painless and light and I didn’t have any trouble up until recently. In Dec 12 i started to get lower back pain when sitting and standing for a long time. I didn’t think anything of it and thought to myself its my chair in work. In January I noticed a twinging pain in what felt like my left ovary. It wasnt realllllly painful but just a slight twinge and it would come atleast every 2 days or so. I went to my doc and he did some swabs and said I had internal thrush and that was that. I then started experiencing lower back pain with numbness in my left knee about a week before my period was due. When my period came it wasn’t very painful but there were big clots in it. I continued to take my pill and everything was fine. Until the back pain returned, a week before my period AGAIN. it was awful, painkillers heat pads hot water bottle I had the lot! My period came and was pretty normal but this time I started feeling pain in my cocix and sometimes what I can only describe as shooting pains in my rectum. My tummy gets really bloated to the point where people would think Im pregnant!! When I have wind it causes pain and discomfort in my tummy and also my left ovary area hurts just before passing wind. (Horrible details – sorrry!). Anyways.. My back pain seems to be constant now and my last period (march) came 3 days late and only lasted for 2 days!! With the back pain in toe.. I have done 1000 pregnancy tests and they have all said negative. I have no pain during intercourse and no blood or pain when opening my bowles (gory details Sorrrryyy!). My mums cousin Susan has endo and I am now fearing the worst. Can endo just come on at my age? Is it possible I have always had it but now its worse? Could it be anything else? I went to see my gyne and he said I need an ultrasound scan which I am currently waiting for.. I’m so worried that I’ve got endo and my insides are going to be all screwed up and I won’t be able to have children 🙁 if you could give me your honest advice and opinions I would be so grateful!! Thanks Sophie xxxxxxxxx
Hi Sophie, I’m not a doctor, so please bear that in mind, with that caveat I can give you my personal experience of endometriosis if it will give you some comfort.
Firstly, it’s very important that you continue down the medical avenues you are already pursuing. They are the best way forward for you. You’ve done everything right so far!
I was diagnosed with endometriosis at 23, but it’s likely looking back that I had it for many years given my odd period symptoms in my teens. It has a habit of being a bit of a “sleeper disease”. It can lie quite quietly in many women for many years and not cause them any problems (either fertility or pain). It can cause pain and discomfort for some though, and that’s when people tend to start going to the doctor about it.
I did have an ultrasound scan which turned up nothing, and it was my laparoscopy (keyhole surgery) that eventually found my endo. There are four stages of endometriosis detailing how widespread it is in your pelvic cavity and I am stage 2, which is “mild” in everything other than pain. I have endometriosis on my pouch of douglas and bowel, as well as a smattering elsewhere, so I know what discomfort in your tummy and bowel can feel like, but there could be other reasons for this.
I’d urge you to stay as calm as you can. If it’s any comfort my insides are pretty good (I’ve even seen the pics!), and I could probably start a family if I wanted to.
Right now it’s really important that you continue to get medical advice and focus on the here and now rather than the “what ifs”. And if you do turn out to have endometriosis (the likelihood of which I am not in a position to say) it’s key that you get a good consultant who can advise you on the right treatment that suits your current circumstances and future desires.
I assure you that if you do have endometriosis, it isn’t the end and you will find a way to live a happy life, even if it does take a bit of time to find that path.
I’m just chancing my arm here as its 3 years later. I just read this post Sophie and it was like you took the words right out of my mouth. I’m on ovranette now and just wanted to ask did you ever get a diagnosis?
Hi
I was diagnosed with endo 8 years ago, I have had it cleaned out 4 times also had my right tube and ovary removed,it also spread to my appendix which was also removed. the last time I was cleaned out was 2years ago but am now experiencing extreme pain on my remaining ovary and extremely sore breasts. I am 38 and am worried what will happen next, we have tried all medications and injections etc, i thought we had cracked it when I went on the edelsin pill as this seemed to really help slow down the growths.
Can medication just stop helping? I am so scared as i don’t want any more operations with other probs i have had 17 in total and really can’t face anymore.
I have also siatic pain which is extreme they found nothing wrong with my back or nerves so can now only put that down to the endo, i am so amazed how much this awful disease effects different parts of the body.
Any advice would be most accepted.
Hi Jacqui, I’d highly recommend that you find a really good consultant if you haven’t already. You’ll know an expert one by how well they can assure of any current worries by coming up with a plan for your treatment that doesn’t just cover “right now” but long term issues for the future. I see so many women who are given treatment only to help with their current symptoms that can then cause other sickness, or problems that weren’t fully thought through. I think you need to do speak to someone with a high level of expertise in endometriosis treatment particularly since you’ve had so many operations and medicines already, there are always options open and available to you, but that specific guidance needs to come from a medical professional.
I too get sciatic pain – down the front and back of my left thigh. Very painful. I don’t think many people appreciate just how many far reaching problems endometriosis causes. My leg issues were mostly sorted by surgery, but I keep the worst of the leg pain with very gentle exercise – something I can only do because treatments in my case have been so effective.
Truly sorry that I am not more help, but hope that you find some relief soon.
hi my name is brittany. i am 24. was diagnosed with pcos in may 2010. i naturally conceived in dec 2011 but miscarried @ 7 weeks. during those 7 weeks i constantjy felt pain at my left ovary and i have ever since. when i had ulrasounds done during the miscarriage the tech told me my left ovary was tucked behind my uterus. the pain waxes and wanes. its been worse since august 2012. i’ve had alot of spotting with clots and only 3 periods since july. i feel alot of pressure on the left lower abdominal area. its worse when i have to use the bathroom at all. i feel like i have a uti but dr said i dont. when i poop it feels like my uterus ovary is being pulled. the pain is also worse when im close to and during my period. and my period are very clotty. i dont know if its relevant but i also have milky fluid coming from my breasts. and often pain during sex. does this sound like endometriosis???
also i have sciatic pain that i was told is piriformis syndrome.
Hi Brittany, it’s really hard to say with the details that are provided. Your best course of action to is to seek out your doctor and asking for help regarding the source of your pain. It’s quite common for many doctors to be quite dismissive on endometriosis because it has so many different symptoms for different women and really the only way to be completely sure is to have a laparoscopy (keyhole surgery is the gold standard process for diagnosis). They’ll have a long process of narrowing down your symptoms before they check that though.
I would urge you be persistant and not be brushed away by anyone regarding finding out what is wrong with you. You know what something isn’t right, so stick to your guns.
thank you for your response. i really appreciate it. i’m working getting my gyn paid up so i can see her about this, whatever it may be.
I’m going in for my first laparoscopy on Monday to see if I have endometriosis, my doctor is very helpful. I basically have every symptom except for leg pain, my back is the worst and sides well almost everywhere lol pelvic pain and back pain that are very bad and worse on my period and hurts with bowel movements and there’s some blood too, also the pressure makes it my pelvic region to hurt and sometimes makes it hard to pee. I can never seem to be truly comfortable at night either and its worse at night and in the morning. Even off my period the pain remains. What I’m worried about is if my obgyn doesn’t find Endo that its in my head or something but the pain is really bad 🙁
I’m sorry I didn’t get a chance to reply to your comment before your surgery, but we’ve been talking on Twitter, so continue to talk to me there if it’s helping at all.
I had made a reply on someone else’s post but here’s my entire little thing.
I’m 20 and was just told I have endometriosis. I got my period at 8 and I had heavy horrible periods up until about the age of 15, since then I’ve had regular, light periods (every 28 days, I’d have a 2 day period) things were fine. In November of last year, I had a very unusually heavy period, and then I did not have a period for 2 months. I took home pregnancy tests, all negative, During January I started to have an incredible pain in my left ovary area and tried to lay down for the day and see if it would pass. I went in to the acute care clinic and the doctor originally was saying ingrown hair, then hernia, then ectopic pregnancy. I had to go to the ER for an ultra sound and have lab work done, but they didn’t see anything so I was went home with hydrocodone and my pain at a 9 out of 10. I went back to the clinic to see a regular OB GYN and they did another ultra sound and still no answers so I was put on birth control. Month later, still had horrible pain rated around an 8-10 so I went to another clinic and saw a different doctor, he originally said I had ovarian cysts rupturing and took my off a tri-phasic birth control from the other doctor and put me on monophasic hoping to regulating the hormones better. I’ve had the intense pain in the left ovary area off an on almost daily, pain shooting down my leg often, and excruciating back pain constantly. It affect my sleep, ability to work, ability to lift laundry, even carry my back pack to nursing school. I saw my doctor again and with no relief from tylenol # 3 with codeine and no change with the birth control he told me he’s 90% positive I had endometriosis. When I asked if it affects fertility, he said yes and I began to cry in the office. I felt like I was just told I had cancer and a year to live. He wants to do the surgery in a month (be on BC a little longer) and then he will be able to look inside and officially diagnose it and hopefully figure out and fix whats been causing this horrible pain. I can’t even describe the back pain to other people, I can barely bend over to tie my shoes or pick something up. I feel so worthless because I can’t help other people with anything. I’m on Vicodin for now until the surgery, but even that isn’t helping all of the pain. I’ve been using heat packs on my back, ice packs on my left pelvic area and warm bathes and meditating in between my studying for finals… Is this something I’m going to have to live with for the rest of my life? Will the surgery make a significant difference? How often do people go back to have the surgery redone? What percent of people with Endometriosis are still able to conceive? My biggest fear is not being able to have children…
I may be going back to the doctor in two weeks after I finish my internship for school and see if I can do the surgery sooner since my pain has been increasing in the past few days…
I was just DX with endo last week by lap surgery. I have been battling with this for just 3 years but it is progressing rapidly. I was wondering if anyone could explain the back pain they experience plz.
I’m 48 yrs old no children and I been living with endo for mire than,10yrs.it is a very pinful condtion but I been blessto say that im able to tolerate pain. I know that this is not comfort to thers but everyone experience pain differently my is painful. But I always think that it could be worse like cancer or something. Please ladys share your pain,wirh others it does help to talk about it..god bless
I’m 37 years old, no children. I had a regular check up and walked into a new dr. finding out my dr. had retired. (thanks for the info!). My new dr. reads thru my records infront of me and happens to mention I have endometriosis like it’s nothing. I was like “um, I have what?” I had never heard of this before till she said it. Apparently I’ve had it since 2002 when I went in for an ovarian cyst removal and my dr. apparently found no reason to say anything to me. So for 8 years I had a disease that I had no idea I had and now it’s getting worse. My pains are unbearably painful, my periods are so heavy I have to change my tampon (super) every 3 hours and my cramps are worse than ever. I have an appt Monday and I do indeed plan on telling her all this and hopefully it’s not to late to do something about it. My boyfriend says if I’m now infertile cause i was never told of this way back when and could have possibly prevented the infertility that maybe I can sue my dr. Can I do that?
Also, do i have the right to ask for tests for infertility even tho my boyfriend and I are not trying at this time?
Jenn, I can’t advise on either point I am afraid. If I were in your shoes I’d consult my new GP and contact the practice manager about making a formal complaint about it, what a horrible way to find out!
Reblogged this on joyofthispain's Blog.
im 22. i had my son in 2009 then got an iud. i started feeling stabbing pains around my ovaries during sex then developed a knot that swelled during my period. it was so painful i couldnt even stand up straight. it felt like someone tore through my skin and squeezed my ovary like a stress ball. i had a surgery to remove the lump and tests confirmed endo. the pain went away for a while but returned gradually worse than ever. now it feels like im being burned from the inside out at random and have recently developed an external numbness when i try to ease the pain. slight back pain but sciatic pain shoots down through the sideof my hip to my leg.im tired all the time and just absolutely drained. my husband and i have been trying to have another baby and althou its only been 5 months im very scared that this ridiculous desease wont allow me to conceive. i think it almost is like cancer. they cant say for sure how you got it, they can cut it out and slow it down but its still there. make it go away 🙁
Had first lap today been diagnosed with endo. They removed it all that they find.
My sister was getting bad period pains for years. When she turned 25 she finally went to a gyno and was diagnosed with a very severe case of endometriosis. The doctor explained that she had had it for about 5 years. So when she turned 20, and had to have two laparoscopies to get rid of it.
I just turned 20 about 4 months ago. And for the last 5/6 months a few days before my period I have been experiencing agonising pain which brings me to tears most times. If I don’t get pains a few days before, I’ll always get it the first two days of my period or when I bleed heavily. I find it hard to get out of bed and even walk and find myself tired all the time with constant headaches. Pain killers don’t seem to work at all.
I had an ultrasound to test for endo but everything was clear.
My sister told me that hers showed up clear too, and that she reccommended I see her gyno because he told her it runs through sisters?
I’m very worried because I’ve never experienced period pain before I was 20. And I can’t seem to handle it. Is this endometriosis? And what should I do?
I first experienced pains in February 2012. I was getting severe pain in left side and was suffering from lower back pain and siatica during my period. I had ultrasound scan in June 12 which came back clear. I continued to monitor when the pain was worse etc and finally went back to my doctor in April of this year. He referred me to a gynaecologist but said he was sure they would find nothing. I had a laparoscopy last week where they found (as I suspected) that I had quite severe endo. Go back to your doctor as I can tell you for certain that endo does not show up on an ultrasound scan and can only be truly diagnosed with a laparoscopy. Good luck and hope you get it sorted soon. X
Hi Brooke, you really need to see a health professional ASAP (as already mentioned) but I can also confirm as Kerri has that I had an ultrasound scan and nothing unusual was returned from that. It’s possible to see endometriosis from scans, but it’s very hard and it needs someone with extremely specialist knowledge (like an endometriosis consultant to see the signs. So in the meantime a laparoscopy (keyhole surgery) remains the gold standard for diagnosis (so a consultant can see it present with their own eyes as well as it’s severity) and hopefully given your sisters diagnosis and your symptoms this will be recommended to you soon.
I can’t comment if you have endometriosis or not, but I know how terrifying new pelvic pain can be. I also know how complex it can be, and how it could be caused by a multitude of things. Don’t let anyone fob you off in the time ahead, you know your pain is real, stay strong and persistant until you have a cause and can start working on a solution.
I have been recently diagnosed with Endo, I have a 2cm cyst on left ovary and polyps on my right ovary, I am in constant pain of varying degrees, can anyone offer any advice on meds? I have had 2 deep D&C’s, tried the pill and had a marina coil, (coil had since been removed), I feel desperate a this juncture, I am exhausted from being in pain most every day
Hi Sandra, perhaps some of my other readers can suggest something. You’ve already tried the treatments that worked for me. (Combined pill and mirena). However it did take about a year for my mirena to settle down and start actually helping me.
Hello, i am a 15 year old girl who is living in constant pain and being this young cannot take it anymore, all the symptoms-signs of this illness. I am in terrible pain with my stomach, legs and back. Especailly when I have my monthly period I get so bad. I was in school about a year ago when I was on my period an the pain was so bad I had to have an ambulance and morphyn. I have been back and forth to the doctors and they have placed me on mefnamic acid which failed to work and now have been placed on the pill. Which is making my pains worse and giving me such bad migraines. Also I have been with my boyfriend for 16 months and I am sexually active. But I cannot enjoy myself as I find my body in so much pain. I can’t live like this anymore and the fact that this ilness can make it hard to have a child in later life makes it all worse as it breaks my heart. I really need some advice on what to do. Please someone help.
Hi Emma,
I’m know how terrifying pelvic pain can be. You’ve mentioned that you’ve received emergency treatment for your pain. I highly recommend that you find a consultant or other health professional with a specialism in pelvic pain who can establish why you are experiencing your symptoms. If I had to live all of this through over again this it what I would do and what I would insist on.
Keep trying, I was put on numerous pain killers and anti anti-inflammatory drugs, that some of these might ease your symptoms, but you really need to be persistant and find out why this is happening to you. The earlier you do this and get someone to take you seriously, the quicker you can start on a diagnosis and treatment. Don’t accept no for an answer.
im now 19 and struggling with my body pain including pelvic area and legs as well as migraine. i read about endometriosis recently. im suspecting that i might have stuck with this disease but not sure to whom to concern. im worried to talk about this. what am i suppose to do?
Aloha mona!
You have no reason to not know what is going on. It’s been over ten years now that I’ve been Living with this and only three years ago I finally got a definite answer and knowledge of this disease. It’s hard to understand wht you’re going through if you have no support group. Or if no one believes you. You need to go with your gut instinct and listen to your body. Only you know what your body is asking for or wanting. Please talk about it with your OB and hopefully he/she will give you that respect and understand and be able to help you. Keep a journal of your symptoms and how you feel (i do) even jot down what you ate if your symptoms get worse (foods contribute to our pain!) I hope you don’t stay quiet. I want you to find that voice in you and speak for yourself. Don’t hesitate and fight like a girl!!! 🙂
Perhaps 5 years prior to learning about endometrosis I should’ve done more research. I say that because I had my first surgey on my ovary due to a ruptured cyst. I have had endo for 7 years now, and chronic UTI. The first doctor I saw, he said I was wearing my belt to tight. The second doctor I saw, said I could have IBS. (OMG I thought I was going crazy! I know I’m lactose in tolerant so I stay away from dairy.) well, I had a cyst rupture on my ovary and had emergency surgery. With the second doctor. When we spoke after surgey, she had told me everything went well and that she saw endometrosis and felt it would be best for me to leave it there. (WHAT?) when I asked what was it, she said oh it’s nothing that serious you’ll be fine. Well, after my recovery at home, I started researching about endometrosis and what a relief to know I’m not going crazy, the pain I have the symptoms I’m living with has a name and what a sigh of relief. I just dealt with the pain and one day couldn’t take it and called for pain medication. I needed to be seen before they just handed me a prescription. So I said ok I will see any doctor available. (I live on an island that has very few doctors and they don’t have a lot of experience or knowledge) well, while going over what my symptoms are the doctor stopped me and said do you know you’re living with endometrosis? I started balling my eyes out. Finally someone believed me. I didn’t feel trapped, it was such a confidence boost. Well, sine seeing her as my regular OB now, I’ve had two scrapings, another cyst on ovary that ruptured and a year ago a full hysterectomy. Wow! Life without endometrosis is amazing!!! I found myself again and my life outdoors, work was fun again. Unfortunately, all of that has came to a complete hault. My endometrosis has been able to find life from the hormone replacement. And now it’s worse than before. On top of all my pain (legs, migraines, abdomen, back, arms, fatigue, insomnia and the emotionall toll) I am going through menopause. I have found a acupuncturist that is very at “healing” my pain to make life easier and tolerable. I do notice if I don’t see her within a week I am back to the pain and symptoms. I would suggest to go and see an acupuncturist. One that has knowledge about endometrosis and a EESystem (Energy Enhacement System http://www.eesystem.com/) she has prescribed medication that is ment for endometrosis itself. One is Symplex F it supports the healthy function of the ovaries and the adrenal, pituitary and thyroid glands. The second Turtle Shell tablets it’s based on modern Chinese research Into treatments for endometrosis. I’m off and on with pain almost as if once a month, I get the endometrosis back like I would a period. I try to see my acupuncturist 1-2 times a week and take all my supplements as directed. My goal is to not have to go under the knife again. I will give it 6-12 months to see how I handle. My next treatment if this doesn’t stay manageable, would be the green plant. :/ I hope some of my experiences help or give some kind of hope. 🙂 good luck
Hi there! I left a comment a couple months ago about my personal issues and how I had a doctor almost positive that I had endo. I actually did have the procedure done just over a month ago now. There was endometriosis adhesions and some unexplained bleeding that my doctor cleaned up as well as removing a couple cysts. Immediately after surgery, besides the incisional discomfort, I was essentially free of pain and that’s how the past month has been for me. My constant back pain and lower left pelvic pain were gone! I even managed to go on daily 6 mile walks or 12 mile roller blade exercises. Unfortunately, in this past week, I started to get the old sharp lower left pelvic pain back. I’m at a loss really what to do. I know what the doctor will say if I go back. Continue with the b/c pills, take pain pills as needed, take alive/advil/tylenol etc. I do still have vicodin that I needed prior to surgery for several months, I just am hesitant to take it since I finally kicked using it for pain relief. I don’t want my doctor to think I’m seeking drugs or faking the pain I’m in, because I’m honestly not! I’ve been trying to take OTC pain meds but I’m just in a constant pain again (about an 8 out of 10 currently), unable to sleep, sit, or rest comfortably. Exercising has become nearly impossible now and I’m just feeling pretty low and defeated. I can’t get my family to understand how much it really does hurt, even though I look fine on the outside, I’m crying on the inside.
I’m wondering about with other people who have had the laparoscopy done, how long did it take before your pain returned? How many times/how often have you needed to have your endo “cleaned” up? I’ve been trying to meditate lately to help get my mind off the pain, it helps a little until I realize I have nursing boards in two weeks and am currently taking 6 courses at the local college… My boyfriend has been by my side and supportive. Even if we can’t have children in the future he stills wants to marry me and we’ve picked out our engagement ring too. He’s been my biggest source of happiness and hope through all of this!
Hi Carissa,
My pain returned about four months after my surgery, it wasn’t quite the same, but it was definitely there. I think you’ve already discovered this but surgery helps with the worst endometriosis symptoms, but it doesn’t mean that they will disappear entirely and like you I was very keen to return back to how my life was rather than carefully trying to ease up to what I wanted to do.
I’ve only needed to have my endometriosis removed once, because I self manage my pain now. This means really pushing back against the desire to live like I did before, and live more reasonably with the fact that I do have chronic pain that I do not wish to exacerbate. This means slowly increasing your activity so that you’re not rushing back to too much too soon, but also working with your health professional on long term treatments that will help keep the endometriosis at bay. On the whole surgery alone may not be enough you may have to find out what medication you might be able to take to prevent keep the endometriosis stable. Ultimately I think my consultant saved me from having to have removal surgery more than once by making sure I was on a two-pronged attack treatment from the get go.
I briefly came upon this page, and as I scan the comments, nowhere have I seen anyone mention bioidentical hormone treatment for endo! I had SEVERE endo in my 30’s with days of not being able to function, had the laparoscopy, only to have the endo return in 7 weeks to 5 cm. I was on a mission to find a new doctor, did so and was sent for a ton of blood work and to a bioidentical hormone pharmacist, he explained the endo is due to too much estrogen in the body, which is why birth control pills are not the answer. I was given progesterone and have been on it now for 10 years, I have never had another crippling endo incident since! The endo is still there and monitored every year, but it does not grow, and has shrunk over time as well. So while there is no cure for this, it does not have to be a factor in your life, I dont even know I have it anymore! Just some thoughts I thought Id share!
the way you have described the awful pain of endo is very well described & a good thing to show friends & family who dont really understand what its like,I am 39 & was diagnosed with endo when I was 22 but had suffered terrible period pains since age 13,over the years I have had every drug option you can imagine & 6 surgeries to try to sort out the mess my insides were! lol I had my last surgery & drug treatment in 2005 when I said enough is enough I was sick of constantly being poked & prodded,endless scans doctors appointments etc & suffering horrible side effects from all the hormone drugs – the funny thing is once I said no more things began to settle somewhat on their own,I was very fortunate to have my 2 children very young so fertility has not been an issue for me & I still get horrendous periods every month where I just have to accept that I need to take very strong pain killers to cope, but I have to say that I feel much better in myself since I stopped treatment & have actually had months at a time where it seems to go in remission by itself – I only hope now that I will be one of the lucky ones & have an early menopause,that would make me very happy,
Alo)(a Shelly! Only you know what your body is calling or asking for. Listen to your body and give it what it wants 😉
I have had endo and ovarian cysts (diagnosed) for 6 years. After years of “dealing with it” I sought help to get rid of it. I tried oral birth control, but that wasn’t working. I finally had laproscopic surgery in February 2013. A month after that I had an IUD (Mirena) inserted. Three months into that I had it removed because of it’s side effects. Here I am 5 months later and I am going to have a hysterectomy. My doctor is going to take everything. The pain is simply too much to handle anymore.
Oh and by the way, I am 37 and have three kids. I initially wanted the hysterectomy, but my doc said that was to aggressive to start with and that we should try the lapro and IUD first… so that didn’t work out to well! Everything grew back.
Good luck to all you women that suffer. Endo is totally debilitating 🙁
Alo)(a nw1! I had my hysterectomy a year ago and unfortunately my endo has came back. I am 30 yo. I do other options like acupuncture and yoga and watch my diet/intake. Listen to your body and become more educated in other options and different lifestyles.
Hi there,
The personal stories on here are amazing! You are all such incredibly strong women!
I’m just wondering if anyone knows of any support groups or a support or info line for endo in Australia? I live in a very remote part of the country with a limited health service, so an advice line or something similar would be really helpful.
Thanks
I just saw that there was a marathon for endometrosis awareness in Australia! Google for it
I was diagnosed with endo when I was 15 years old. I am two months shy of being 30 now. For 15 years, I have suffered. I lost two babies because of this disease and had a full hysterectomy at the age of 25. however, it is still there. Lurking inside my pelvis, only now, attached to my intestines. I do not know what to do anymore. I have a great Dr that took me off all estrogen to “starve” the info for a few months, however, it didn’t help. I can’t take pain meds because I became an addict in my late teens/early twenties because of all the surgeries I was having back to back. I wish I knew of a way I could manage this pain. today has just been awful. I am exhausted. it literally hurts to stand. I don’t know what else to do.
I can’t tell you how much support just reading the posts here has given me. I have been dealing with chronic pain and horrible periods since I started menstruating. I had my right ovary out a few years ago due to intense right sided pain. I was told then by my doctor that I had a lot of endometriosis. I started having hot flashes within a week of surgery. I tried HRT but stopped after a few months because of side effects. My periods, which I was only getting every other month, were crippling. I felt like my uterus was constantly in a huge cramp. I couldn’t go out and stayed in bed. I also got pain in my right upper side. The side effects resolved after about six weeks and I was doing well until about four months ago. That’s the last time I had a period. I was happy at first, thinking that I was done with it all,until about four weeks ago when I started feeling like I was going to start, got intense left side pain and cramps. I had to take some sick time and take narcotic analgesia to deal with the pain. Since then I have had low pelvic pain, low back pain and now also pain down both my legs. I have a hard time just going out to shop as the pain gets pretty intense and goes down my legs, have to stop frequently and rest. i feel like an old person, I am 47. I get quite exhausted now by the end of the day. I think that it’s from dealing with the pain all day. I start feeling anxious to get home so that I can take some pain meds and get some relief. But then I am conflicted about pain meds. Once I take them I can’t drive, but without them, I can’t go out anyway because I am in too much pain.
I am going back to see my gynaecologist soon and was thinking that a hysterectomy would be the answer. However, I have read some posts by other women who have had that done and are still having pain. How is that possible if the uterus is gone? All of the medical information seems to be written by people who have no idea how painful and disabling this disease is. Does it really stop or resolve once you go through menopause?
Thanks to everyone for sharing their own stories. It’s very helpful to know that your not a hypochondriac or imagining things and that someone out there knows what you are going through.
I stumbled onto this site while doing a little research and feel a breath of fresh air while reading. Last month i ended up in the hospital because of severe abdominal pain and they found a large cyst on my ovary. I had the cyst removed this last Thursday and my doctor told me he found endometriosis in my pelvis. Obviously our talk was brief because I was drugged up, but I go back in this week. I am 24 years old, and my husband and I have been trying to conceive for a while now. Although I am in a great deal of pain, it scares me to death that endo might make this hard or even impossible. What are the treatments that many have gone through to get pregnant with endo?
Hi Sophie. I Have The Same Exact SYmptoms. Curious if You Have Found Anything Out? HoPe All Is Well.
Jessica
Wow to all of you. I don’t feel alone and have hope to get aa solid diagnostic in the near future. I have had pelvic pain since I was 16, now 37. Had appendix removed at 16, gallbladder removed in 2010, diagnosed with celiac disease, IBS and ooof course to no resolve. Diagnosed with epiploic appendicitie in November 2012 and. Again in April 2013. Since april I have been on disability as the chronic lower left pain has left me with pain management such as morphine and anti-inflammatories. Had CT scan, colonoscopy, gastroscopy, barium x-ray, and just this week was hospitalised again for relentless pain and had a tranvaginal ultra-sound. All they said was that my uterus was bigger than average and thick. I aam now scheduled to see a gynecologist in 2 weeks. All I am really looking for is a diagnostic. The pain is unbearable, even with 10 mg of morphine every 3-4 hours for the past 4 months. The pain is constant on left side, with radiating back pain and leg pain. I aalso feel pain for approximately 2 hours after a bowel movement. When I do have my period, the pain is accompanied by nausia and vomitting. I have lost 25 pounds involountarily in the last 4 months. Hoping to get answers soon !
Everything you just said was on point about this. I have been in the hospital for 2 days and nevermind all the other times i was discarged without answers. Thank you so much for your help! I will deffinetly mention this to my doctor.
-P
Hi…i have a couple questions..Its Started Out I Had Pneumonia In My Left Lung….it started with really bad lower back pain and pain in the same area but in my lower stomach…Back In May… Ever since the pain went away with medication from the ER…Now were in the end of july the past week the pain came back im very worryed…What Do U Think It Could Be? maybe My Pneumonia Came Back?
Here’s my story Endo story. About 3 yrs ago I was sitting on my couch watching tv when this intense abdominal pain came out of nowhere. I told my parents it felt like I had been “stabbed or shot in the stomach”, but when I mentioned going to the hospital my mom said, “I’m not taking you to a doctor, you’re probably just having cramps!” (considering this was a day after my cycle that was a pretty logical conclusion to come to) The pain started around 9:00pm and persisted throughout the night. I finally fell asleep lying in the fetal position on my couch around 5:00am.
A year later, I’m in a meeting with my college advisor, when the pain returns. I recognized it as soon as I felt it b/c that pain was like nothing else I had ever experienced before. I fell to the floor and cried for a few minutes, the I gathered all my strength to walk over to the campus clinic. The doc gave me a pelvic exam and said I had an “enlarged uterus”. He scheduled me for a sonogram 2wks later and that revealed a cyst on my left ovary about the size of a tennis ball. After an MRI and another sonogram my doc set me up an appt for surgery. The lap surgery officially diagnosed the cyst as endometriosis.
I started seeing a gyn shortly after that. She asked how I first found out about endo and I replied “Well it all started out when I felt this bizarre pain…” she cut me off and said “Let me guess, it felt like you had been stabbed or shot in the stomach and the pain lasted approx 24-36 hrs?” I said “OMG yes! All of that!” She said “Yep, you ruptured a cyst.” Then she gave me some birth control pills and it’s been going on a yr since and I haven’t felt anymore pain. Hardly even cramp during my cycles anymore 🙂
Good evening:)
I’m currently 28 and have been living with endo symptoms for 14 yrs.
In 1999 I was put on an oral contraceptive at age 14 because of pain. That helped for about 6 mths and then, BOOM, the pain returned. Sought many medical opinions and all said it was just my period and cycle and to take pain meds as required. Nothing out of the ordinary, apparently!
In 2005 I was finally referred to a gyno who performed a laparoscopy. Along with horrendous pelvic pain I had had persistent UTIs for 18 mths (peeing pure blood within 10 minutes of first pain/symptom of UTI and no link to sex, diet or any of the normal triggers). Gyno was sure he would find endo – found nothing. No answers to explain any of the crippling pain. Was put on continuous meds for UTIs for 6 mths and have not had another problem with them since (never got an answer as to why I had them – extremely frustrating). Continued with oral contraceptive (7 yrs with no break at this stage) and saw a lot of crap doctors in the following years.
In April 2012 finally got a decent GP who referred me to a different gyno to the one I saw in 2005.
Second laparoscopy in July 2012 and endo located and lasered/cut out. Gyno stated that it was highly likely I had it in 2005 based on my ongoing symptoms and that it was just missed. Appendix was adhered to uterus (scissored apart and left appendix in), and bowel was also adhered to uterus (scissored apart). Thankfully, it doesn’t appear that any of the reproductive parts are blocked. I had complications after the lap as a result of an allergic reaction to adept (liquid left in my abdomen to stop everything sticking back together while I healed) and ended up back in hospital twice in the 3 weeks after surgery.
The lap DID NOT help. Since July 2012 the pain has worsened. I have had to change to a double dose oral contraceptive to try and stop constant bleeding. That didn’t work. I have missed months of work (unpaid) and many social events due to the pain and other lovely symptoms I get.
I had the Mirena inserted last Friday and am in excruciating pain and bleeding heavily. This can take up to 6 mths to regulate.
On top of the physical aspect there’s the emotional one to deal with (this can be just as bad).
My current boss (I am a police officer and it’s a male dominated field) is horrendous. I am told that I need to increase my pain threshold and he blatantly doesn’t believe there is anything wrong with me. I have visions of kicking him in the crotch and then telling him to work like nothing has happened (irrational, I know, but it helps:).
Over the years I have tried diet changes, Chinese medicine, yoga, Pilates, meditation, Physio, massage, acupuncture – you name it, I’ve done it! I avoid prescribed meds as I find they don’t help with the pain, they merely make me feel sick or dizzy. I don’t need to add to that as the endo already makes me nauseous and at times dizzy (I have fainted multiple times in the shower – if you want to freak the shit out of your partner it’s a definite winner!).
I find baths help or cold packs (heat directly on my stomach makes me feel sick – my partner refers to my stomach as the oven as it burns up when I’m in pain). His cold feet on my belly works a treat:)
I’m going to give the Mirena a shot and see if it helps. Some days the only thing that gets me through is knowing I have an amazing support network in my partner, family and friends.
I am looking forward to the day (I like to remain positive as I feel it does help) when I don’t have to pump my body full of hormones and meds just to get by.
Bring it on:)
Always happy to get advice from others, so if you have any options/treatments that have or haven’t worked please feel free to let me know. Xxx
I am 35 and have had endo since I was 19 I learned more from reading this then what the drs told me ty I now know y I’m tired a lot and headaches etc I also thought if I got a hysterectomy I would be cured ty again for the info
Well, I had my doctors appointment today and I was given a lot to think about and need to get it out there and bounce it off someone who might understand what I have been dealing with. So here goes;
I will be 32 years old this year. I have been dealing with the symptoms of endometriosis since I was 8 years old. I was put on birth control pills at 11 years old to deal with the symptoms, but I didn’t actually start my period until I was 15 years old. I have had 4 laparoscopy procedures and one DNC to remove a tumor from my uterus. I recently got out of a terrible marriage (we had no children) and last year I decided I was sick and tired of trying to maintain my disease and decided to take myself off of my birth control. My thinking was 1) I’m tired of going to the doctor all the time, trying to control the pain and switching medicine around all the time and 2) why am I trying to maintain a reproductive system that I will probably never use anyway?
Well, needless to say this week I was in a lot of pain. I woke up Monday morning feeling like something was trying to claw it’s way out of me. I couldn’t lay on my back, side, stomach or propped up against the wall in a sitting position without hurting. I could barely stand up straight to get to work yesterday morning. Luckily I had a doctors appointment this afternoon.
I talked to my doctor about all of the pain I had been in the last few days, I told him about the horrible night sweats and hot flashes I have been suffering since trying the Lupron shots 10 years ago and how i hadn’t had a period in 3 months and told him how hopeless I feel about things. He asked me to try progesterone therapy for a couple of months to see if we could kick start my period and try to regulate it again. He also wants me to think about surgery, and said that a partial hysterectomy might also be an option for me. Either out of necessity because things are so bad, or elective. I’m really struggling with the choice. I have wanted one for so long, but everyone told me I would want to have kids someday and now here I am, 32 years old no prospects for a husband or life partner, and I don’t know if I should finally go through with it or not. I don’t want to keep putting money onto surgery every couple of years to maintain a reproductive system that ill never use, but making the choice to have it removed is also very hard. I really do t want to be 40 and trying to get pregnant and I don’t want to raise kids alone. I don’t know what the right choice is, and I’ve been crying all evening trying to figure it out. HELP. Any feedback would be appreciated.
Never mind, thanks anyway!
As I lay here on my vacation in myrtle beach for my sons 17th birthday I wonder how I can keep going on with this disease that has taken over my life! Over the past 10 months I hAbd been misdiagnosed with hernias, ruptured cysts and strained stomach muscles. I can no longer journal the Jain to figure out what food sets it off, what time of month makes it worse or which exercises cause flair ups. After surgery in June I was told I have endometriosis. Stunned since I am 40, never had cramps or painful periods, dies not run in my family and had no problems becoming pregnant. I still winded if there’s more to it. I have sharp throbbing pelvic pain that goes down to my leg and recently bothering my back. For the most part I have terrible aches, pains and tugging burning pains in my mid to upper abdomen which doesn’t seem normal. I’ve been told a hyterectomy could alleviate this but I have a hard time believing any doctors anymore and an scared to death to go such a surgery to come out worse than I went in. The laparoscopic was enough pain and tirture for this body. I feel like I’m ruining my family’s life and feel I am the crabbiest and most annoying person to be around. Sick of the pain and sick of googling information on a cute that isn’t there. Wish to God I could at least have more good days than bad ones. Can’t plan to do anything without wondering if I will be feeling ok or in pain. Ruining my sons birthday trip because out of the blue I had to go back and lay down from pelvic and stomach pain. So I google again to see if this pain is normal because I can’t wrap my head around this! No cure for endometriosis? Come on people tell me this can get better. Birth control is not helping. Exercise makes it worse so I sit around and let my once fit body turn to mush. Depression has set in and I need to find a way to fix this and change it around!
Hello everyone, I am glad to see there are others suffering with similar issues. I am currently 27 and have been suffering from extremely painful and debilitating menstrual cramps since I was 15. Mainly back labor like pain radiating down my legs that painkillers can’t touch. In the last 6 months I have experienced worsening menstrual cramps (one month they put me on the floor) and now have them in the front and back. my menstruation changed from 6 days (always) to 8 days the last couple months. I have never been regular except for the couple years I was on the pill (which is not a good option for me). I also have hypothyroid, low testosterone, low progesterone, high estrogen, vit B12 deficiency, and vit d deficiency. About a year ago I finally found an awesome women’s clinic in my area specializing in bio-identical hormone replacement therapy. After looking at the symptoms that are caused by endometriosis, I can relate to almost all of them. 3 days ago extremely painful intercourse and excruciating pain following led me to my dr once again. 2 vicodin hardly took the edge off. The past month and a half i’ve had mild cramping continuously, not just during the times i’m supposed to. the last few days have been extremely painful, especially in the right ovary area in addition to the cramping. They ruled out the simple infections, pregnancy, etc. and I have an ultrasound on tues with a possibility of also have an exploratory laparoscopy (sp?) to find and laser any endo that may be there. They are thinking either a cyst or endo and with my extended symptomatic history they are leaning more towards endo. My DH and I haven’t used any kind of bc in almost 3 years and I have never been pg. They said it could take a week to get the ultrasound back. I am petrified that I may never be able to have the children I so dearly want to have, especially since i have been having issues for 12 years. The dr. mentioned the possibility of infertility and that never leaves you with a warm and fuzzy feeling. i recently found out both grandmothers had hysterectomies and one aunt did as well. I’m In the process of trying to figure out their underlying issues to see if there’s any correlation. It’s so discouraging and frustrating but I am glad to finally have dr.s that are taking me seriously. Thank you ladies for sharing your stories, you may see more of me here if they determine that is indeed what i have. I will need all the support i can get. I hope they figure it out quick cause i’ll go crazy having to have this kind of pain that not even Rx painkillers will touch. 🙁
Follow up: Ultrasound showed a couple small cysts on my ovaries. Dr. is thinking that I had one that burst as well as those that are currently there, but she is unsure why I’m still in pain as it should have gone away by now. They gave me Tramadol and that seems to be helping a little, at least taking edge off. Monthly cramps were way worse this go round and the Rx didn’t even touch them. Scheduled for a hysteroscopy in about a week so she can check everything out and run some more tests. She said it sounds like I may have scar tissue from previous cysts and possibly endometriosis. Looking forward to having answers and hopefully some relief soon.
Just an update. Had surgery on Tuesday. My dr did a laparascopy, hysteroscopy, and polypectomy. She used a new technology that uses a special dye to light up endometriosis cells like a Christmas tree seen with the help of a robot. She found endo in my hip and removed it along with other things she found inlcuding cysts on my ovaries, polyps, and scar tissue. She also discovered that my left filopian tube is closed. Pregnancy is possible but will most likely require fertility treatments. She is running tests on biopsies and a few other things. I will know more at my follow up in a couple weeks.
Just had my post op. Yesterday she showed me all the pictures and explained everything. She used a special new dye technology that illuminates the endometrial cells. The dye allowed her to see affected areas that couldn’t be seen with the eye. She discovered that the endo had attached my appendix to a place it wasn’t supposed to and was pulling on my bladder. She said that is what was causing the major pain I had most recently. There was also endo on my left ovary (left tube was closed too), other places within the general vicinity, and near the ureter which is near the hip area. She found polyps and scar tissue also. She was able to remove everything she found giving me about a 6 month window to get pg before I have to start bc to keep it at bay (I haven’t been able to get pg yet after 2 1/2 years). I am happy to report that after the surgery my constant cramping is gone and my hips have not bothered me (yay!) I have not yet had my next period since the surgery so it will be interesting to see how the cramps are.
I was blessed with an awesome surgeon! I hope you are all able to find good drs that will listen and help you out! If you happen to live in TX I can give you her name! I would highly recommend her to anyone!!
Hi – Can someone an endometriosis specialist in New york other than Dr. Sechin and Dr Kanayama? Both doctors are out of network for me. I was diagnosed with endometriosis in 2006 after a laparatomy. I’ve battled with occassional pain since then , but the past 4 months had been really difficult – with severe pains almost on a daily basis. I’ ve seen 3 doctors but i feel like they all are not providing me the right treatment. Any doctor recommendations will be much appreciated. Praying for everyone suffering with this debilitating disease. Thanks
I am 47 and have had seriously heavy periods for several years. Im talking 2 super plus tampons an hour and large clots at its worst. Ive always been amazed that I have zero cramping but I usually get bad back pains starting a week before. Three days ago I developed back pain that very quickly spread to my upper thigh and it became so debilitating I had to go to the ER..of course they did nothing. I have not been able to walk for 2 days and ended up getting my period yesterday, a week early. I crawled into my PC Doc office yesterday and he says its a herniated or ruptured disc. For some reason I feel like its not. I wondered if it could be related to mentruation or possibly endometrosis? But Ive never been one to get abdominal cramping only back pain…and the leg pain is really what is preventing me from walking…feels like a really severe muscle cramp or spasm that isnt relieved even with Oxycodone
it could be endo,we all get different symptoms, but it sounds more like to me that it could be fibroids,they cause heavy bleeding & clots along with extreme tiredness & backache,are the clots very large? because with fibroids they tend to be,it sounds to me you need to see a gyni & get it checked out
Hey everybody.
I don’t know if I have endo or something else, so here’s my story, warning, it’s kind of long. Normally, I’m really embarrassed to talk about female related stuff like this, but since I don’t know anyone here and no one here knows me, I feel comfortable, which is weird but true.
I’m 19 years old and had irregular periods since last year. I never went to a doctor for it because I thought that it was my new normal, I thought it was great, last year I got my period every 3 months later, so basically 4 times last year.
About 4 or 5 years ago, I had irregular periods for the first time in my life. (Started my period at the age of 12). I had it for about 5 days, then it stopped, 2 weeks later, it happens again. That happened one more time after that, then we went to the children’s doctor that we used to go to, and she told me to take birth control pills. After that my periods were normal, or at least I think they were. Until last year.
When I was in grade 11 in 2010, there were a few times when on the first day my periods were so heavy that I had to use two pads so that it doesn’t leak, I felt like just spending the day on the toilet so that I won’t need to change it so much. I remember that year it was (I think) the second last class of the day and I just couldn’t handle it anymore, I felt nauseous and I just couldn’t focus, so I called my mom to pick me up and when I got home, I went to sleep and woke up feel in a bit better. I don’t know if that’s normal or not, so far no one’s ever told me that it’s not normal.
This year, things got really messed up. In February or March (I don’t remember exactly) I had a normal period. Then, nothing until the end of June, that period lasted until August 1. Then nothing for one week, and on Friday night, it started again. The period that I had for over a month, wasn’t regular bleeding, it was a bit more than spotting, but not much. It’s the same with the most recent one. For the irregular period I finally went to the doctor at the end of July, and she booked an ultrasound and blood test. Plus, an appointment with a gynaecologist. So I went to the gyn at the end of July and she asked me a few questions and said to wait until the results are here for the blood and ultrasound. So we got an appointment for after that, which ended up being this Tuesday. My ultrasound was normally and I just found out that I have a thyroid problem, which she said to talk to my family doctor about.
Anyways, on Saturday morning, I woke up with severe pelvic pain, It was so hard to get out of bed. I was sweating a lot that morning too. I had diarrhea 6 times that day and I didn’t eat anything because I was afraid that things could get even worse. I just drank water, milk, and, tea. On Sunday I felt a bit better, my mom and sisters were in the backyard gardening so I decided to get some exercise thinking it might make me feel better, all I did was trim some plants, that’s when my right side and leg hurt so much that I started crying (I don’t cry from physical pain easily, which shows that this was unbearable). I couldn’t bend for the rest of the day, other wise it hurt even more. My mom was actually thinking of taking me to the ER on Sunday, but since I had an appointment on Tuesday, I said to wait, plus I don’t think they would do anything, which hurts emotionally because it could be something very bad and they just dismiss like I just have a cold (I had acid reflux for 3 days and mild left abdominal pain a few months ago and my family doctor said that it’s because of the acid. This wasn’t the first time I had acid reflux, and I had that mild pain 2 months before that, but she didn’t do anything, she said that it will get better on it’s own, yeah right, and now it’s a lot worse. I can’t believe that I believed her), that’s why I’m losing faith in doctors, I don’t trust them anymore, if they’re not going to take me seriously, then why should I go there. I read on Mayo Clinic’s website that acid reflux isn’t supposed to last for more than a day, and if it does, I should got to a doctor, look what that got me, NOTHING!
So, on Tuesday, I was feeling hopeful that maybe something will come up and this mystery will be solved (kind of mystery, since I searched online on what could be going on with me, that’s when I learned about endo and that all of my symptoms point to endo, I couldn’t find anything except a few STDs that have similar symptoms as I do (I’ve never done it, so those are impossible for me). Unfortunately, the gyn did nothing, she told me to get another fasting blood test to see the hormone levels since it was the 5th day of my current period. She thinks that I should go to my family doctor tell her about it, because it might be a digestive problem. I wanted to tell her that it can’t be because that wouldn’t explain the burning pelvic pain, and that it could be endo, but I didn’t say it. So I was pretty dissatisfied. Then I remembered what I read about natural ways to help with the pain (if it’s from hormones) and to get my period back to being regular without putting hormones in my body. She said that when I come to my next appointment, that I will probably have to use birth control pills for regular periods, but I already decided to buy the Maca plant in pill form. My mom said to not tell the gyn about looking for a different healing method because she might not understand, and that I should say I will take the pills even though I won’t. Even though it’s only been half a week, I think it’s working, not for the pain yet, but for the period. my left side doesn’t hurt as much as yesterday, but my right side hurts a lot, it got worse today.
So basically, this years problems have taught me to not trust doctors because they won’t consider all the possible causes and they’ll either dismiss it as nothing or send me on a wild goose chase. So I figured it’s better to take things into my own hands for now. If I don’t feel better by the end of August, then I might have to go, because I have college starting next month and there’s no way I’d be able to focus and sit for 2 hours (I have 3 classes a day, sometimes 2).
Basically, almost everywhere hurts.The pelvis, left and right (now mostly right) hurt so much, the pain is sometimes burning, and sometimes really sharp like needles. I also have beck pain, my butt feels like a a needle is stabbing it when I sit sometimes. I also have pain in the middle of my chest that comes and goes. I had diarrhea again on Wednesday and yesterday morning.
So, do you think that I might have endo, something else, or some virus. Since people commenting on here are actually diagnosed with it, I want to know if that could be it, I did lots of research, which is how I found out about this blog. I just want some opinions from people who have it.
Sorry for the long, gross story.
Yesterday and today it hurt to sit and lie down, but when I’m walking, I don’t feel any pain except some back pain.
I don’t mention endo or anything to my mom because I’ve learned that she dismisses it as a stomach flu (even though I didn’t vomit), because she doesn’t want to think of me or my sisters having anything serious, neither do I, but sometimes there are some things that you just can’t ignore.
I’m really curious, I don’t like not knowing for sure what’s going on, so I hope that I find out what’s going on or that it gets better soon so that I don’t need to go to the doctor or hospital to find out why I’m in so much pain, here’s hoping. I just want stronger pain killers right now, Advil doesn’t help at all, so I stopped taking it.
I forgot to mention the headaches, the leg pain, and the fatigue.
Sorry about all these separate comments.
I’m sorry to hear you are having so much trouble. It took me a long time to find a good dr that would actually listen, over 10 years. I hope you are able to find a good dr. soon. I understand how frustrating it is to not have meds work, I have had problems finding something to work, even Rx painkillers. I have surgery in a week so they can do some more investigating for things like scar tissue and endo that don’t show up an ultrasound. My hormone levels were off which caused fatigue as well as migraines at the beginning and middle of my cycle. I found a great dr who has helped with bioidentical hormone replacement, I have thyroid issues also. Best of luck of finding answers, hopefully we can both find some answers soon!
45, one child, and just been Diagnosed with Endometriosis. Im not sure why but, come night time my stomach muscles just under my ribs would get really tense, i have the dull aches, stabbing pains ect. I tried Celebrex and it helps with the tense muscle pain and helps to stop the stomach pain. My morning bowel movements are getting worse! I have to hold my stomach cause the pain is so excruciating! Im getting cold sweats and have to hold back from puking. Has anyone else with endo have these same painful bowel movements?
45, one child, and just been Diagnosed with Endometriosis. Im not sure why but, come night time my stomach muscles just under my ribs would get really tense, i have the dull aches, stabbing pains ect. I tried Celebrex and it helps with the tense muscle pain and helps to stop the stomach pain. My morning bowel movements are getting worse! I have to hold my stomach cause the pain is so excruciating! Im getting cold sweats and have to hold back from puking. Has anyone else have these same painful bowel movements?
I got diagnosed in dec 2011. I had a diagnostic laparoscopy an they also inserted the mirena coil, I had no more problems until march 2012. From then on I have pretty much had chronic pain sometimes just a few hours, sometimes a few days, sometimes weeks. No pattern. I have mefanemic acid to take and zapain when it’s bad. It’s got to the point where nothing helps my pain but equally I am trying to manage it because this will be my life and I am only 32.
Ok heres m story and dont get me wrong i have. Been to hospitals but they never would find anything i know something is wrong because my pains are getting extremly worse.. my pains happen in my stomache and when they hit its almost like my insides are gonna fall out and it puts me to my knees at times or will have me curled up in a ball and now ive been having alot of pain in my female area and its startin to interfere with my sex life this pain happens during intercourse and hits even hard after to where i cant even move f e the pain i cant even begin to describe the pain its soo horrible i honestly feel like ima die and now its even hitting me just sitting around or.while im working and my right leg hassarted botherin me in past couple days its like a painful tingly feelin goin down to my knee and i cant stand to put any weight on it i need any advise i can get right now im only 26 and been dealin witb this for years please help…
I am 26 years old. Doctors suspected that I had it from as early as 18 as I had really painful periods. I actually ended up in the ER of a hospital because of the excruciating pain one time. Of course the only sure diagnosis is getting a laparoscopy done which I did in April and it was confirmed. It is hard to deal with an issue like this as most people cannot relate to It. I try not to feel depressed because of all the pain and the fact that I don’t know how my ability to have kids is going to be affected. I feel so drained all the time because of the different pains. I just grit my teeth and put on a smile because I am so tired of saying I don’t feel well in response to persons asking how I feel or why I look so pale. I am also anemic so it makes it more challenging especially when I have a period at the end of three months as has been recommended. Many people do not understand how this affects the quality of a woman’s life and reading this today I am like wow other people out there understand what it is like. I am also on amitriptyline the lowest dose but it makes me so drowsy the next morning so I try to take it only a weekend. Other times I survive on Buscopan. I am trying to be positive about it but it really takes its toll.
I have also been in hospital in pain several times. It gets to the point where I can’t stand up right. It feel like there’s somethin in there that’s pulling me down. I have spent many days laying in bed in tears wondering why am I so sick and in so much pain? I must not have a high threshold for pain like other women do because everyone gets cramping and pain. So I feel like I hace myself convinced that this is “normal”. But there’s no way missing out your everyday life is normal! It’s sad that so many women are having the same issue and nothing is being done!! I have seen my obgyn every 6 months for the last 5 years or more and still, nothing. Put off as cramps or cysts. Not good enough!
Also, there is a “period tracker” app which I have just DL to try to track how I am feeling so I can have as much info to tell her for my next apt as possible. I highly suggest you get this app!
I have had awful periods and cramps for years. I am constantly tired, no matter my diet, I have been having major back pain in the last year with pains in my legs, and chronic headaches. But I have never been tested. I was told I “might” have it when I was 17 (I am now 27) and nothing was ever done! Thank you so much for this post. I will be seeing my obgyn in October and will deffenitly be asking about this! Thank you!
I was diagnosed after having an emergency c-section at 18. My pelvic and uterus are tilted, I’ve had cervical cancer cells twice, and I have endo. I’m getting so tired of my doctor’s because all they give me is tramadol and that doesn’t even take the edge off. I go back tomorrow and I hope they give me something that will help with the pain! It radiates down into my groin and thigh and it hurts bad!!
I’m 17, I was diagnosed with endometriosis about a year and a half ago. Nothing helps. I’m perscribed hydro because Tylenol, midol, Motrin, etc. does not work… AT ALL! I’m in the hospital typically every month due to how severe my pain is. My hydro is starting to not take an effect on me either. I’ve tried heating pads, tea, warm to exteemely hot baths, showers, saunas… I miss so much school and cry myself to sleep every time I’m on my period. I’m considering surgery because I’m just absolutely miserable. Endometriosis makes for a horrible existence. I feel nothing helps, and none of my friends/family/doctors understand my pain. I’m so miserable and there’s not many choices out there 😖😰😣
Im 17 and i found out a few months ago that i have endometriosis. After reading the above i have a vague understanding of why i get all these pains, but im struggling alit with the emotional side of things. I told my best friend because it was making me crazy inside but she just dismissed me. I would really appreciate it if maybe someone could contact me via email or on here with any advice youre happy to give on how to deal with it
Hey Emily, i am 18 and i also have endometriosis. I’m here for you, i understand how it feels. How about you email me? Aneila.loraine@gmail.com
I have had endo since I was 19 I’m now 27 everyone’s endo is different no 2 cases are exactly the same. I have friends with endo that don’t get the symptoms I get such as migraines and fatigue sometimes I feel physically drained to the point I can’t bare to lift my head of pillow but it goes as quick as it comes or it could last for weeks depends how lucky I am I have had every treatment option apart from hysterectomy, I would however advise you push for regular smears with doctors as I was diagnosed with endo at 19 and didn’t have my first smear till 25 which my nurse found quite ghastly abnormalities in cervix cells are increased in people with endo therefore you should have regular smears. Stay strong
Hiya
Mine started when I was 17 I have undergone every possible treatment and I’m now 32. Last year I had a full hysterectomy and I was praying it would be an end to it all. But unfortunately it came back and I’m now having an MRI scan next week to see if it has spread to my pelvis or it’s developed into cancerous cells.. All I can say is keep fighting 🙂
I have had endometriosis for years. When I starting going to doctors with my symptoms, endometriosis was much less known and I would be told that it was all in my head and I needed to learn to deal with my period or that it was because I ate too much starch or they would give me a pregnancy test and send me home. Going through years of trying to convince health experts that I was not overreacting left me beating myself up every time I felt pain. It still happens to this day, when I feel pain or I have to miss work I find that I tell myself what the doctors had told me. This makes the pain worse! AND it adds more emotional turmoil. Here is what I have found to be helpful over the years:
1. When you feel pain, relax as much as possible. Breath slowly and take it easy. give yourself a break. try to catch runnaway thoughts (that lead to you feeling crazy) and know that there is no use for them. Pamper yourself in whatever way you like. I find hot bubble baths are calming and help ease the pain of endo
2. Do research for yourself! I can’t tell you how many times I have gone to someone who was supposed to be an expert on endometriosis only to find that I was more informed about the condition than they were. I also found that the more I learned about what was happening in my body to cause pain, the more I could relax. The more I knew the less scary it became, even at times when it was quite debilitating.
3. Don’t discard the help you could get from alternative therapies. I have been given many different hormone pills from doctors, had surgery and prescribed painkillers. None of these proved effective for me and often (especially when it came to hormone pills) caused more problems for me than I already was experiencing. The best best results I found came from Chinese Medicine, Acupuncture and Massage Therapy (particularly Bowen Therapy) BY FAR. Chinese medicine has a different way of understanding the body than what you may be used to, but if you keep an open mind you can learn a lot about things you can do to help manage endometriosis.
4. Invisible pain is a mindf*ck. You need to know that the pain is real and it is ok to feel what you are feeling. When I find myself worrying about others thinking I am overreacting or when I think I am just making up the pain that I feel, I do research on what I am feeling. I end up reading that other people are feeling the same pain, or I find out more about our condition that helps me understand the mechanism behind the pain.
5. Practice meditation or at least quieting your mind. When hormones are running crazy it is hard sort emotions, feelings and thoughts. Practicing meditation on a regular basis allows you to access a calmer frame of mind in the midst of hormonal waves, excruciating pain and racing thoughts. Often hormonal surges cause me to have mood swings where I get angry or scared or sad about something that is not as important to me as I feel it is in that moment. After practicing to quiet my mind, I have been able to notice when I have stronger than usual emotions and stack it up to the ole endometriosis, instead of feeling like every piece of my life is falling apart. I imagine the strong emotions washing over me like waves yet I float calmly amoung them, relaxed as possible. What this looks like is me crying quietly and calmly on the couch, but it feels a hell of a lot better than having a mini-breakdown or getting into a fight with my partner.
It is not an easy condition to deal with because it is not outwardly visible, it is poorly understood (associated with femininity in a male-dominated world), and it involves strong emotions. You can go from being greatly affected by the condition to barely noticing you have endometriosis and then back to being debilitated by it. You can learn about endometriosis and you can learn about yourself and find ways to live healthy and happy among the bad days. Hope this helped some and I hope your friend can learn more about what you are experiencing. Sometimes you may feel alone but it doesn’t mean that what you are feeling is wrong.
I am dealing with similar things you are. Mine is so severe that at times I can’t walk. No one understands the pain I’m going through so maybe by having loved ones and friends read this..it might shed some light on what your going through
I was diagnosed a little over a year ago with stage 4 endo. I had always had painful periods since around my mid 20’s, but it was always “that sounds normal” from Doctors. I started having an odd pain in my right side (not during my period). I was at first concerned it was my appendix but since it dragged on a few days figured it wasn’t. Went to the ER just to be safe which turned into a ct scan and ultrasound and being told i had a 19 cm growth on my right ovary. Went a few days later to see my gyno based on direction from the ER Doctor and I was in surgery 3 days later. Supposed to be a laparoscopic procedure which turned into being cut open, removing an ovary, my appendix as a precaution and having gallons of water run thru me to try to clean out the chocolate fondue fountain of lesions in me (medical professionals description, not mine). My Doctor says that i am the worst case he has seen and likely will ever see (go big or go home i always say!). I had Doctors that went into my surgery just to see cause they had heard what was happening who later stopped by my room just to meet me cause they didn’t know how i had been functioning as a person all these years. It was the most liberating moment ever because it validated that my pain had been real all these years and not “normal” at all. I am still in pain more often than i care to be, but at least i know whats happening. Each case is different, but have faith that God will never give you more than you can handle, and reach out whenever you need support. Thats what gets me through….
Hi,
I’m just looking for a bit of advice really… I”ve always suffered from painful periods, had my son at 17 and I’m now 30. For the past two years my pain has got so bad. I am in constant pain(at varying degrees) for around 25 days a month two weeks before my period, during it and for around a week or so after it. I have been back and forth to my GP who tried me on various pills but I had no joy with them.Finally in may my GP referred me for an ultrasound and prescribed buscopan(which take the edge off combined with paramol). Had a transvaginal in the end as my bladder wouldn’t fill and the results cane back as normal .. I haven’t gone back to my GP as there can’t be anything wrong with me.
Why am I still in awful pain and unable to cope without tablets and lying on my stomach? I’m tired all the time and apart from pelvic pain I get a terrible pain just below my ribcage. Does anyone else suffer with this? I’m sorry to go on but I don’t know what to do. My son has a form of Autism and I need to feel better to support him.
Thanks for reading this x
hi Beth,
I would go back to the GP & ask for a referral to a gynecologist,Ive had endo since I was a teenager (Im now 39) & its only by having a small surgical procedure called a laparoscopy where they look through your tummy button with a small camera that can diagnose it,internal scans only really show cysts or fibroids & endo can lurk in any little nook or cranny in the pelvic region which scans just dont pick up,Ive had scans in the past that came back as normal yet when I had surgery afterwards by insides were riddled with it! also if you are referred to a specialist they can offer a variety of treatments which is better than just dishing out pain killlers,sometimes GPS are not very sympathetic & just put it down to “being a woman” but dont accept this,endo is extremely painful & it needs treating the kind of pain you describe does sound like typical endo symptoms & I really think you need to see a specialist to help you,I hope this helps & dont worry there is help out there xx
Hi Shelley,
Thanks for your reply. It’s good to know that I’m not going mad! I can’t keep living my life this way and I’ll push my GP for a referral. Thanks again,
Beth x x x
hi Beth
I was diagnosed with endo last year I had been suffering on and off with this awful pinching pulling pain in my left side for about 8 years. went to the docs on more than several occasions, had ex-rays, scans etc and referral to a gyny., was told through explaining my symptoms which happened around my period time,sometimes a few weeks before or during or after. then all would go quiet for a month or so then bang it was back with a vengeance. what appears to aggravate it more is sitting and bending I am puzzled to what is going on inside my body whilst engaging in such simple maneuvers. Ive got to the point of not knowing which way to turn,, after the gyny basically told me it will go away. I suppose its because of my age at 47 the menopause will sort it out. I am not convinced and now feel this condition is ruining my life. nearly every month I am popping ibuprofen as it is the only pain killer that suits me. I can only wear loose clothing as anything to close fitting causes uncomfortable pressure on my left side which then results in that awful sickening pain. oh to wear my fitted jeans or trousers no such luck. I am debating weather to go back to the docs and see a different GP. I was told by the gyny that exploratory procedure was unnecessary so I now feel at a loss cause. Beth i have absolute sympathy with you my scans came back normal the only strange thing was they couldn’t find my left ovary but I was told by the gyny that sometimes the bowel hides it. Its a bit strange that it the same side I am having the problems. Its a sad world when you have to keep going back to the GP for the same problem over and over again till they finally diagnose you this lengthy process results in unnecessary months or years of pain. I wish you lots of luck and hope the GP will diagnose a,s,a.p.
from Tina.
Oh Tina, you’ve been through the wringer… It’s awful that you have to keep going back to the GP and they have no sympathy whatsoever even the lady doctors. I hate going to the doctors as it is but with the way they are its even more difficult.
Keep fighting and pushing for some help. I’m hoping to go next week and ask for a referral as the only half decent doctor is away this week.
Take care and thanks for your message x. Xx
Tina, I know how you feel. 4 yrs ago I went to my doctor due to painful intercourse. Repetitively I was told I had an std, and actually had 6 tests within 8 months, all revealing NO stds. Then I was told that some women are just different. Finally, I couldn’t take the pain anymore and pushed my doc for answers. After feeling like I was in labor twuce last week, I finally got a gyni referral, who wants a laprascopy done. Finally feel like I’m not crazy.
I’ve had pelvic pain since I was 23 and am now 36. No one thought I had endo bc I was on depo provera for years at a time and still had pain. I had a laparoscopy in 2010 & they found nothing. I finally said take my uterus bc my doc said sometimes they dont find the endo until then and sure enough last month they found a bunch when they went in. I have had pain while sitting & stabbing pains for a long time but over the past 6 years I started getting terrible leg pain along with the usual abdominal & pelvic torture and can’t do stomach crunches or the muscles right below my ribs cramp and get stuck. I no longer work out or stretch anyway bc it causes everything to flare up and then I’m in pain for more days. I was diagnosed before with pelvic floor dysfunction but now I assume it’s my bodies response to the endo. My left side is much worse than my right & I feels like it’s all one giant knot. I had Botox injections to stop the spasms back in 2010 as well. Does anyone else get really bad pain down their backside and legs or experienced muscle problems? Has any one tried Lupron or found a good med that the endo responds well to?
Hi Beth,
I too am in the same situation as you, my heart goes out to you, but i have had sooo many scans , blood test , camera test , ( both ways)
all came back normal, im 40yr old women, work full time and have 2 boys to look after, i live my life at the moment by the clock as to when my nxt pain killer is due 🙁
i have constant pain on my left side, into my groin and down my leg and my lower back area.
I have now been given a date 18th sept for a Lap to be done and i pray they can help me , im on Amyatriptaline for IBS as the Dr thinks this could be the problem, however thus had made no difference at all. xxxxx
That’s so awful you’ve been put through all these tests and still nothing. Let’s hope now that they can make a diagnosis after your lap and get you sorted. Will you find out straight after the procedure or have to wait?
Good luck and I’ll be thinking of you on the 18th. Let us know how you get on.
Take Care,
Beth x x x
hi there i just saw your comment. do uou get the feeling like something tears inside then you get burning in lower left groin then hip . my leg is soo bad now finding it harder to walk each day. i had endo removed 3 yrs ago and got coil fitted..it helped for a while but i went bak to gynea recently and he turned me away and said ibs. ime gutted as ime slowley but surely shutting down.. ime seeing urolagist next week as bladder doing weird tnings. good luck to you..
I was on elavil as well & hated it. I had to stop taking it bc it made me a zombie. I feel ur pain & am so sorry to hear that u have had to endure all that. I had the same experience. For 13 years I went from one dr to the next all w no answers & all tests coming back ok. Which is good except for ur in a ton of pain w no answers. I had a lap & they found nothing. My dr said if I have endo it may not find it unless they take my uterus. Finally 3 years later I said I’m done just take it to alleviate some pain. I had an EGD & colonoscopy, GI gave me meds for IBS. When they took my uterus they found endo on my intestines & rectum. I haven’t had stomach troubles since. Right before the surgery I was having terrible stomach problems:(. I have a 10 yr old and my periods were not incapacitating… I wish u all the best. Go w ur gut u will figure it out. I have the same exact pain u speak of, left side, groin, leg…
Hi Beth, I started having trouble at age 11 when I was diagnosed with having an ovarian cyst the size of a softball. I am 37 now and have 2 kids. I have struggled with endometriosis (diagnosed in my early 20’s with laparoscopy). I have cluster headaches or migraines the entire week before my period each month and continued problems with ovarian cysts (predominantly on my right ovary). My periods are extremely light most of the time but extremely painful. (Some months are uneventful.) Other times My uterus feels like it’s on fire and in a knot, i feel lightheaded and nauseous and I double over in pain. The pain shoots down my legs and I have a dull constant pain in my lower back. I have had 4 surgeries to remove ovarian cysts and lesions from other organs. I’m having a total hysterectomy tomorrow and removal of my right ovary. I highly recommend you find a great obgyn for a second opinion. Sorry this is so long but I relate to what you’re going through. Best wishes and best of luck!
hi Melissa, despite being diagnosed with this awful condition last year after suffering for many years previous the gyny did not feel it necessary to do exploratory on me. surely by investigating to make sure I have the correct diagnosis would then result in correct treatment, I got to the point now where I just want them to take it away to at least give me a chance of some kind of normal life. I have had two children by c section who are now 17 and 18 I wonder if the c section was the cause of the endo. my GP told me last year that I had a lot of scar tissue on my left side, the same side I have the endo. is having hysterectomy the only hope us endo sufferers have I wish you luck in your surgery and have a speedy recovery I hope it cures the endo.
from Tina X
I had a hysterectomy two years ago and the pain is coming back. So even with everything removed it is possible for the endo to return.
I cant understand why GP’s are not sympathetic about women’s problems especially the male GP’s
it does make me wonder if it was men that suffered the surgeon would be standing at the theater doors shouting next please. I don’t mean to jest but I do find that male GP’s come across as if they cant be bothered with women problems all you get is its common, it will get better, well docs us women want to stand up ( as its the only comfortable position) and be counted we want you to be bothered we are in pain ( and you know a woman in pain is not nice).
you know Tina I think youve hit the nail on the head,if endo was a mans disease they would probably have a cure for by now,as women we are told that pain is “normal” but the kinds of pain we get is not normal at all & we shouldnt have to suffer like we do or made to feel guilty for complaining about it,I remember when I was pregnant asking my mum what labour felt like & she replied like really really bad period pains – this terrified me because my period pains were so dreadful I couldnt imagine what labour would feel like! Ive had 2 children with no pain relief apart from gas & air I can honestly say Ive had period pains that were worse than labour pains! & any doctor who is dismissive of this kind of pain should not be a doctor in the first place
Funny you should say that. My last period was my worst ever, and my thought was the same. I’ve had 3 children, with the gas only, and this is far worse pain. I’m waiting for an appointment to gyn. But all my symptoms seem to fit with endo.
Had my laperoscapy yesterday,no endo found, I have every symptom going so back to drawing board, don’t get me wrong it’s great not to have it but frustrating that whatever I do have is killing me and none the wiser, I’m very groggy and sore today and the gas pain on my diaphragm is not nice, good luck to you all, I hope you find the answers and treatment for your pain x
Hi,
I am 30, and since I was about 14, I have had beyond brutal periods. I have to miss about 3 days out of the month, as I cannot function. The pain is dull and sharp at the same time and I get intense deep shooting pains inside my vagina, down my legs, rectum area, ovary area and sometimes back. Also, we have been trying with perfect timing and fertility meds for 13 months to get pregnant and no luck. I am thinking I must have endo. Even heavy narcotics do not help and I get the pain for a week or so before my period starts too. My insurance kicks in in 2 months and I am going to ask to get a lap done, I just cant live like this anymore. Does this sound like endo? Cant imagine what else it could be? So scared, it has affected my fertility negatively 🙁 But I’m hopeful for some answers and resolution soon. So sorry all you ladies have to experience pain too!
hi Christina I live in the UK so have to rely on NHS to sort out my problem. my GP last year sent me to a private hospital as NHS patients get sent there now which are funded by the nhs, due to over spill i suppose. but the gyny was not interested in doing any kind of op I got the impression because I was an NHS patient that it wasn’t worth his while. Im sure if I was waving spondoolies at him he would of had me in for every test under the sun. I am now going back to a different GP and will ask to see a nhs consultant and will see what happens. I hpoe you get your lap done and get answers soon you just feel like your going round and round all the time and not getting any answers or cure. best of luck.
Tina.
Hello there my name is lisa I got diagnosed with endemetrriosis nearly 2 years ago but I have been going through absolute agonising pain since I was 11 years old, when my periods first started. Doctors always told me it was normal and there was nothing wrong with me but I always knew different. The pain is so bad that I pass out and painkillers do nothing for me, I am restless and I don’t know what to do with myself and I get terrible leg pain and a temperature. I was just wondering if you knew of any ways to deal with the pain, it would bee much appreciated. Tjankyou very much.
Hi Lisa,
Sorry to hear about your pain, I know how you feel. The only way that I can get through the month is with a combination of buscopan tablets two four times a day and paramol tablets. Some people say that solpodeine max are good too. Other than the usual hot water bottles etc there’s not a lot more I can say….
Take care,
Beth
Hi all,i am also looking for the answer.For me it all started at 18 ,chronic stomach pain,had a laperoscopy and was diagnosed with IBS.Aged 27 had my first c-section,aged 32,had my second c-section.Periods were light but had lots of pain,had another laperoscopy and nothing detected.
a while later docs discovered a hernia behind my tummy button,had surgery on that.Six months later in lots of pain,hernia reappeared.Again another op.
Meanwhile periods by this time were all over the place,went back to docs who performed bloodtests.Results came back that i had a high CA-125 meaning endemetriosis or ovarian cancer.I was rushed in for scans and other tests and they couldn’t find anything,but CA-125 was rising and falling,my only option was a full hysterectomy.
The op was perfomed in jan this year.The menopause is hard to deal with at 37,but in a strange way i was glad to be told i had a lot of endemetriosis.
Been taking HRT and decided to come off it this week as having really bad pains in left side,think it’s endemetrioses flairing up ,but was never advised on pain relief.
It seems a long and dull story,but i am a mum and my kids i feel are suffering because of all this.Can anybody offer any advice ,info on pain reief
Tracy
I had the same i had a total hystorectomy in july 2012. im 31. I get slight pain but nothing major I havent been taking HRT as the side effects are not great. so been having herbal tea to help with hot flushes and i seen to have them under control. also total diet change has helped as not i cant eat fatty oily foods as makes me very sick and in pain.. green veg and lots of fruit really helps i now have more energy and feel great like a new woman. hope this helps
lisa
Hi Ladies, like most of you I have been managing my endometriosis symptoms for many years. I was a late bloomer with my periods not starting until I was 16 years old and the pain started immediately, Every 4-6wks I would experience usually 1-2 days of heavy bleeding, intermittent but intense stabbing pains to my lower abdo and a constant throb for 3-4 days to my lower abdo and lower back. Because I didn’t know any different and i only had pain whilst having a period I always thought that it was just bad period pains . It got to a point in my early 20’s where I would have to take at least 1 day a month off uni/work as I was literally curled up in a ball in excruciating pain or passing out, I was prescribed pain killing suppositories but because the inflammation was soo bad my to my lower abs/back/ bowels/rectum it just made the experience worse, the only comfortablish position was sitting on the toilet! This was when my partner and family made me go back to the doctor. Luckily I had a great relationship with my family GP who referred me to a Gynae straight away without doing any tests, I requested and have only ever seen female Gynaecologist because I think they have more empathy.
Anyway, I had a laparoscopy, which confirmed endometriosis and poly cystic ovaries. some areas where cortaurised during this procedure but I was told there were some areas to close to arteries so I would need laser treatment on those areas. At my next appt I was prescribed a monthly abdominal injection of ‘Zoladex’ for 6 months and even tho I still had some pain during periods it really took the edge off and made it more manageable. I became more aware of what would make the pain worse – sex pre period, constipation, full bladder and any Gynae procedure and found a medication called ‘Panafen’ it contains ibuprofen and codeine this is the only non prescription meds i have found that dulls the pain ( I tend to have adverse reactions to prescribed pain killers)
I am now 37 and up until recently i have still had uncomfortable periods but the more intense ones were less frequent. I have undergone quite a few assisted fertility procedures over the last 12 years with either negative results or miscarriage and this year I have noticed that the period/endometriosis pain is now becoming more intense and frequent. I have discussed this with my fertility gynae and I requested a laparoscopy, she discouraged it and stated the only need for a laparoscopy is when there is severe pain, but now after another failed IVF and 2 days off work with heavy bleeding and pain, I will be going back to insist on havin a laparoscopy to see what’s going on.
Sorry for the long story it wasn’t until I started writing that I realised how much I had to say.
I moved to Australia from the UK 8 years ago and it took 3 attempts to find the right doctor, I would encourage any women to shop around until she finds the right doctor for her ‘ the one that fits!’ It’s your body and only you know how your feeling your pain so you need to find someone who also believes this and wants to control the symptoms as much as you do.
One last thing, after 13 years of marriage I finally managed to get my husband to understand the pain by describing it as ‘imagine the is a large throbbing heavy ball sitting in your lower abs, it’s painfully pressing on your back, bladder and bowels and every now and then this ball shoots out a hot spike in all different directions’ now he gets it 😉
Beth M
Hi Beth,
Sounds awful all you have been through to have a baby,hopefully your time will come soon.
reguarding wanting another laperoscopy ,please think long and hard.It seems like a small op in the grand scheme of things ,but if i could turn the clocks back i would never have had it done .You are constantly hoping for answers and solutions.I had two and nothing was detected,in the end due to blood results i had to make the biggest decision of my life.
Endemetriosis was the answer i got after too much surgery ending with a full hysterectomy.
good luck with everything x
Tracy
Hi everyone!
This is like they say “been there, done that”. My period started when I was 11 and it has always been a great deal of pain, heaviness, irregularity…. I had 3 c- sections because I do not dilate enough yet spent up to 3 days in labor before the doc. decided to operate. I had my tubes ligated after my 3rd child and that just added more pain not counting the pain I was left with for life after the epidural. Back in 2005 after years of problems I had a Lap done to remove a cyst and lots of scar tissue that had my uterus stuck to my abdominal wall. Well, guess what? now at age 46 I have to go through that again, I had a pelvic ultrasound done back in July and it showed besides the endo another cyst, and fibrosis. Now, with no medical insurance I’m left with the decision of getting another Lap, or get into a research program where they will provide medication, or pay for a monthly vaccine to induce menopause for 6 mo. which by the way is expensive. So far I’m on the pill which only helped in reducing the bleeding but has not helped at all with the pain, even worst I think it only made my monthly suffering longer. I feel useless since I can’t be sitting or standing for long periods of time. I feel as if my insides are ripping off. I’m afraid to carry stuff, bent, sneeze, mop, travel just about everything but most of all it’s sad to feel as if you were exaggerating everything. Most people don’t seem to understand, even women who don’t know how it feels like dismiss you. My husband is trying to understand but… So,I guess what I am doing here is trying to reassure myself by reading all your posts. This pain is real and I’m not the only one going through this. I wish you all the best and hope someday doctors may take this matter more seriously and help us.
I am a 35 year old woman and have had problems with this since i was 17. I have had 3 diagnostic laparoscopy surgeries wiht oblation & 2 c-sections. I am about to have a CT scan to rule out anythint else before going into a 4th laparoscopy. I have constant pian. My GYN put me on Lybrel to take away my period to rule out menstral cycles as my source of pain. I am at my wits end. I have hurt 2 weeks of each month for the past 5 months. I don’t want to have intercource due to the pain I am in. My lower back is killing me to the point I can’t get comfortable when sleeping. Aside from working 40+ hours a week I also take care of both of my children while at home.
Carmen i feel the same way exactly. I feel most people don’t understand the pain. My husband has even said that “I’m not normal” Well after 2 sections, 2 miscarriages, and living with constant pain i guess i finally agree with him.
I just went to a new GYN this week and i am pleased to see that he really seems to care and is being very agressive with running test and preparing for probably an upcoming surgery.
I’m 22 years old, started my periods at the age of 12. Been having severe period pains like forever, had a non-cancerous lump removed from my right breast at the age of 16. Since then, I have been a regular patient to various doctors for period pains, at times I’d have to skip school due to the pains. My GP then referred me to a gynaecologist who suspected that it mite be endometriosis but instead put me on depo (I was 15) then nastraite for two years. So after turning 19 I decided to stop injections. Since then my period pains have been unbearable, so much that each time im on my periods I have a loose stomach, nauseas, sharp pain in my right leg, don’t have appetite and often feel depressed. The pain lasts for 2-3 days…could it be something serious????? Plz help
Back in July I started feeling bad cramps and like I had a really tight chain around my stomach so I went to the er they found ovarian cyst one had ruptured and the found uterine fibroids so I stayed in icy for 3 days and left against medical advice
When I got home I still have server pain. My gyn set up a hysterectomy for Aug 16 I am only 28 with a boy and girl I opted out of that, last Wednesday I started feeling dizzy and like I couldn’t stand all the way up my stomach felt as if something was inside cutting small pieces of tissue and nerves out so again I drove myself to er they did a ultrasound both vaginal and other they dx me with endometriosis I went back to my gun thy Friday now I have a laprascopy Monday. For endonetriosis. Readin about the pain on this page help me understand that even the pain in my left leg is related I learned a lot from reading here… I’m ready for Monday I no this is not a cure for my disease but maybe I can get some relief I’m tired of hurting and not sleeping I’m tired of the pain pills and BTW good luck 2 anyone suffering from this horrible disease open up and tell someone about your pain it can and will make a difference
Sorry for the Miss types I have a smart phone LOL gun should be GYN and icy should be ICU THANK U AGAIN
I do suffer with ibs, but all week iv bein gettin twinge like pains in my sides esp my left side,and it goes down into my lower stomach,it’s really uncomfortable esp when I bend over or sit a certain way! I have started to get pain across my back and it now goin down my legs but not all the time 🙁
Hello! I am 33 and have a 5 year old child. I’ve always had long, painful periods. GYN always said “its just my luck”. But, in the last year, I’ve been struggling with abnormal periods (length of time, bad clotting), lower back pain and a sharp, throbbing pain on both sides in the area I would think my ovaries are in. It throbs slowly and feela like something ia tugging inside, stays for a while and goes away. Then a few mins later its back. This goes on before, during and/or a week after my period. I asked my mom about her medical history and she told me she ha endometriosis, diagnosed when she was 29 and pregnant with my younger sibling. She had a hysterectomy after childbirth as a result. My dr doesn’t seem willing to entertain the possibility that my pain/period issue is related to Endo. He said that he isn’t willing to do exploratory surgery because my pain is not debilitating. And, the only way to know if it is Endo is to try to have a child. I desperately want to have another, but its just not the time. Should I Perdue my pain with another dr? Specialist? I’m not even sure it is endometriosis but I’m afraid it may be, and this could cause issues with conceiving another child.
Hi, I cried after reading this publication about endometriosis. It’s so accurate. I was diagnosed 3 years ago now. I had symptoms for as long as I can remember but was misdiagnosed with IBS so it was untreated for about 10 years.
I had a 10cm endometrioma on my left ovary and a smaller one on my right. I had extensive adhesions on my bowel and bladder and in many other areas of my abdomen.
I have had to laparoscopies to treat my endometriosis, I’m currently waiting for my third as another cyst has appeared.
I have been with my husband for 14 years, have been married for 3. I feel like the luckiest woman in the world, my husband is so supportive. My endometriosis has made it almost impossible for us to have any kind of physical relationship recently, I bleed heavily and it causes a lot of pain.
Endometriosis is a devastating disease, I don’t feel like I have the support of any medical professionals and going through the symptoms of this disease is very isolating as no one seems to quite understand the physical and emotional destruction it causes.
I hope I can get some sort of resolution on my next meeting with my consultant, I’m only 29 but somedays feel like I’m 99.
I’m quite a positive person and know there are many people living with conditions a lot worse than mine. I hope research in the future helps people prevent suffering the way myself an many others have because of endometriosis.
Amy xx
Hi all, I am 43yrs of age since age 13 I have been experiencing painful periods also irregular periods, after 5 yrs of constant fertility treatment I finally got my daughter who is now 14 yrs. I have had several tests done and was diagnosed with endometriosis two years ago by my GYN. She says that it has taken over some parts of my bowels. I have been placed on meds. to put me in a pregnancy like state to see if this would help, however, my body was not responding well to the meds. and I had to be taken off of it. So here I am suffering every month with this monster. I feel for all of you and lets stay positive.
I’m 36 with 4 children, I’ve always had painful periods but just got on with it, but 5 years ago I started to get pain in my hips waking me up in the night radiating down into my groin and the feeling of early labour pains, I would have pain killers hot bath and walk around, I thought it was arthritis, recently I’m feeling this pain every night and most mornings, sometimes I can bear it and not take the codeine prescribed as it knocks me silly and with 4 children I can’t just sleep, I cry with frustration most mornings and find it hard to bend to even put my socks on, I feel like my whole middle is stuck and I can’t say where the pain starts or ends, it just builds up like a tidal wave, I went to hospital today and was told it can’t be endometriosis as it only hurts around a certain time of my cycle! I feel I’m going mad because the pain is very real, scans have not showed anything all looks ok, I’m exhausted and emotional, I don’t have pain during sex just next day I feel a bit tender but everyday hurts mainly, I’m on the pill constantly but still bleed on occasions, my doc says Classic endo symptoms but gyni says no! I’ve started to get sciatic like pains also and feel my nerves are all exposed, does this sound familiar to anyone 🙁
hi Claire
whoever told you that was very wrong Ive had endo since I started my periods at 13 (I am now 39) I can sympathize with you because thats how it affects me too once you have adhesions & perhaps parts of your insides stuck together caused by them the pain is chronic & lasts all month – not just around your period time if I were you I would keep going back to your doctor & demand a referral to a gyni to give you a laparoscopy top see whats going on scans are no good because they only pick up cysts & fibroids not adhesions,I hope this helps & please know you are with friends here we understand what you are going through some days I could just scream with the fraustration & pain xx
sorry Claire that should have read demand to see a different gyni & yes I get sciatic pains too my gyni says this is pressure from the womb pressing on the sciatic nerve xx
Claire, I have to agree with Shelley. I am 27 and have been dealing with endo since I started my period at 15. I was diagnosed 2 weeks ago but always suspected I had it. Finally found a dr who didn’t brush off my symptoms. The horrible back labor like waves of camps would come every month with my cycle with all their fury. For about 3 days life was pretty much just miserable. I also of sciatica issues. I had no other symptoms other than irregular and painful periods. About 3 months ago I started having mild (well what is mild compared to my normal) cramps continuously all month. About a month and a half ago I ended up having excruciating pain with intercourse that didn’t go away. She thought it might have been a cyst that burst. The ultrasound showed some of the regular cysts you get most every month. (Keep in mind endo usually doesn’t show up on ultrasound) The pain got a little better but was still pretty bad and didn’t go away. I ended up having surgery 2 weeks ago. Had my post op yesterday. She ended up doing a laparoscopy/hysteroscopy/polypectomy for the surgery. Yesterday she showed me all the pictures and explained everything. She used a special new dye technology that illuminates the endometrial cells. The dye allowed her to see affected areas that couldn’t be seen with the eye. She discovered that the endo had attached my appendix to a place it wasn’t supposed to and was pulling on my bladder. She said that is what was causing the major pain I had most recently. There was also endo on my left ovary (left tube was closed too), other places within the general vicinity, and near the ureter which is near the hip area. She found polyps and scar tissue also. She was able to remove everything she found giving me about a 6 month window to get pg before I have to start bc to keep it at bay (I haven’t been able to get pg yet after 2 1/2 years). All that to say, the endo had connected my insides and it was super painful. I was at the point where I stopped taking meds (OTC and Rx) because nothing worked!! I am happy to report that after the surgery my constant cramping is gone and my hips have not bothered me (yay!) I have not yet had my next period since the surgery so it will be interesting to see how the cramps are.
I was blessed with an awesome surgeon! I hope you are able to find a good dr that will listen and help you out! If you happen to live in TX I can give you her name! I would highly recommend her to anyone!!
Yes I had terrible groin, stomach, and hip pain. I have endometriosis but no one figured it out for a long time bc I’m not a classic text book case. 3 years ago they did a lap & found nothing. I took depo provera also & even tho the pain lessened it didn’t go away. If it weren’t for my gym continuing to offer solutions I would still b on the dark. I decided to have a partial hysterectomy bc my dr told me I still may have endo & it just wasn’t detected by the lap. I did it bc I’ve had pelvic, abd, leg pain for too long wo an answer and finally they found it!! I’m so glad I finally have a definitive diagnosis even though it’s not good news…. I’m still have symptoms a month later so my doc is putting me on bc pills to treat the endo that’s left plus I have my ovaries still. I had many doctors that didn’t think I had endo. If u think u have it pugs for what u want. It has been my experience that sometimes u need to be ur own doctor & they don’t know everything.
I had a laproscopy in may they found 2 cysts on my ovaries and a high amount of endometriosis I had been suffering from pain since I was 15 now I’m 23 they lasered the endo away and removed the cysts they put a mirena coil in which would prevent the endo from coming back but ever since my op the pains I get when I’m in are so much more severe it’s been 4 months now and I’m struggling to cope with it it affects my work annoys my friends and relatives as I literally cry with the pain when it strikes… Am I still getting the pain as its only been 4 months or will I always have it? I’ve been back 3 times they’ve done blood tests and more scans but couldn’t find anything except 2 small cysts has formed again but that was 2 months ago I don’t want to kee going back and be told just to take pain killers 🙁 I have no one to talk to about this and no one understands the pain it causes. Sorry to babble I just needed to vent my emotions xxx
Hi Jess
I had a mirena coil fitted after surgery in 2005 & I just bled non stop with agonizing pain for 4 months I went back & asked for it to be removed as by this time the pain was so bad I could no longer lay down to sleep & when the doctor tried to remove it my womb had contracted so violently that the cord had been pulled up inside my womb too,so I ended up having to have it surgiclly removed & the coil had become embedded in the wall of my womb where it had caused lots of damage so they had to give me a scrape as well to sort out the mess,the surgeon told me afterwards that some womens bodies react badly to the mirena & just see it as a foreign object so the womb will contract violently non stop to try & expel it & this was what had happened to me,if you have not settled down after 4 months I would definately recomend having it removed so you dont end up like I did with yet more surgery,hope this helps & keep your chin up because after I had the coil removed the pain settled down xx
My ony problem is what can I do without the coil because without my periods are so heavy and painful the coil has defiantly cut down the amount if bleeding but the pain is worse. I have been put on different pills but my body doesn’t like them either I just end up feeling sick all the time if I’m on a contraceptive pill the coil is my last hope do you think the endometriosis has come back already they gunk said he had removed it all. Xx sorry I have no clue about all this so many questions
I couldnt say for sure if it has come back so soon or if your body is just not liking the coil but there are other options to help with your periods I was in the same position as you I had tried all the drug options & the mirena was the last resort after the problems I had with the coil I was offered womb lining abblation where simply put it is a small operation where they literally remove your womb lining with a laser I opted for this & only had to stay in hospital for 1 night I was a bit sore afterward as you would expect but had no stitches as they go up through the vagina rather than cut your tummy & bled for a about a week afterwards but after that it really did cut down on the bleeding during periods & it lasts for about 5 years at a time,I know we are all different, but personally I found this helped far more than the mirena ever did I still had pain during my periods because I have a lot of internal scar tissue from both adhesions & repeated surgeries but I have to say it was probably the best treatment for me out of the lot,I hope you get some relief soon take care xx
Hi All, my name is Alaina, I have recently been diagnosed with endo via a lap. While I had much hope the lab and cauterization would alleviate my pain-which lasted 2-3 weeks around periods. Five months later, I am now in pain 24/7, under medicated (b/c all the societal reasons listed above and due to dr’s fears of pain med addiction), under medically supported (my gyn has shrugged her shoulders and suggested a pain clinic), and beyond exhausted. I now take continuous birth control pills as well as a oral anti nausea pill twice a day, for years I couldn’t take any BC because it makes me so sick. Well, the antinausea keeps e pill down and most of the ickyness at bay (except in cars, with temperature fluctuations, and intense barbing pain/internal assaults) but gives me night sweats, and hasn’t stopped my periods or symptoms (I have been taking it 4 months). My family and I am trying to find someone who specializes in wide-excision laps and in treating endometriosis, which is virtually impossible here in Oregon USA.
I am currently in he recess of developing a descriptive list of my symptoms and the pain to compile into a letter to use while shopping for the right fitting gyn and found all of your comments and descriptions of your endo experience helpful for me to concisely and descriptively articulate the magnitude of distress I (or rather we) are experiencing. Thank you for using your voice and helping me reach out and use mine.
I am currently reading a book by Andrew cook called “stop endometriosis an d pelvic pain: what every woman and her doctor need to know”
Much of the info in stop endo is really helpful and insightful, this dr has treated endo for many years and it shows with the descriptions and knowledge he carries regarding endo. Some of the book is a little hard because it looks at the reality of managing this disease and elllucidates the hurdles we face as patients enmeshed in a patriarchal medical system.
I would love to build a support system with women who live with endo, if any of my MSG resonates with you I would love to talk more, maybe we could provide each other the support and resources one can only get from those living this reality. You can reach me at Alaina.lesko1@gmail.com.
Peace be with, healing thoughts to you all, together we can conquer the helplessness that endo makes us feel,
Alaina
Oh boy same for me. Endo sufferer and major adhesions. Had a mirena coil, it turned and embedded itslef and I ended up in A & E begging them to take it out. They warned me it would harm my chances of having a family and in so much pain frankly I didn’t care. Post menopause I also suffer with Divercultis, IBS and hiatus hernia added to years of endo and adhesion laparoscopies, hysteroscopies. By the time a surgeon suggested after failed Zoladex injections that maybe if menopause and oestrogen level drop didn’t help I should consider a salpingo bilateral hysterectomy. PS I had lost both fallopian tubes through endo and adhesions previously. I was so ill after last lasering off of widespread adhesions and so sick from morphine, I vowed ‘never again’. Post menopause, I still get pelvic pinching, right side which is worse when I sit, at night and I can’t bare anything tight round my waist ie pants are 3 sizes bigger than I need! Oh such fun not! I have no menstruation which is a plus but still get pelvic pain from adhesions which spread into my stomach and glued up my pelvis also affecting my bowel. By the time it was discovered or should I say the damage done, too late, my insides where a mess! and approaching 60 now, with arthritis of the knees, hip and lower back disalignment/arthritis and the depression and anxiety and poor sleep and quality of life, I juggle medication and feel fatigued all the time. However, I try very hard to pull the odd smile even though it hurts 24/7 and when I do sleep with the help of sleep tabs and pain relief, nerve blockers too, it is wonderful but doesn’t last long. Yeah, I think it is about time or overdue for the world to wake up to endometriosis and adhesions don’t you?
My heart goes out to you.
Gyno* not gunk
Hi I’m 19 years old. I’ve been having severe abdominal pains BEFORE my period since I was 15 years old. I’ve visited countless doctors. I was given painkillers and told that its a “normal” period problem. A couple weeks ago I learned about Endometriosis and did research on it. Surprisingly it was everything I was going through. I visited another doctor a few days ago and told him about my findings. It was only then that I was told that I may have Endometriosis. He advised me to do a “Laparoscopy” to confirmed it but I want to learn more about that. Please help with some advises on the test.
hi marisa
a laporoscopy is a small operation where you are put to sleep & they make a tiny cut through your tummy button & they put a small camera inside to look at the pelvic region this is the only real way to diagnose endo as scans dont pick it up at all,,sometimes if they find endo you will also have 2 tiny cuts just above your groin where they operate via keyhole surgery with a laser to zap any adhesions they find,each cut only has 1 or 2 stitches & you usually go in as a day case to have it done,you are a bit sore & bloated afterwards but its not too bad at all & you are usually haled up within a couple of weeks – hope this helps xx
Thanks Shelley
That does help. I have to decide now whether to do it or not. My mom is scared for me to do it. Its about a week now since the pain began. I always get it BEFORE my period, is that normal where endo is concerned?
yes it is, endometriosis is basiclly like womb lining tissue in that it responds & grows each month due to our hormones but it grows where it shouldnt outside of the uterus – every month your uterus lining thickens & then sheds away as your period, the tissue which is endometriosis responds to hormones & grows in the same way, but because its where it shouldnt be it causes intense pain this is why its always very bad just before & during your period ,it can also make you feel nauseous have constipation or diarrhea, make sex painful & bleed in between periods,it can also be very painful during mid cycle when you ovulate too if the ovaries are affected,please tell your mum not to worry about the laparoscopy if you decide to go ahead,I know how she must feel I have a daughter the same age as you & I worry about her all of the time,but its very safe,I should know I ve had it done 6 times now! lol & it really is the only way for your gyni to really find out exactly whats going on so they can help you,please dont worry there is help out there & you are certainly not alone here xx
Hi Marisa,
It took 5 different gynos over 3 years until I found one that cared enough (and believed me) to do something……she saved my life. Had abdomen pain for 3 years….all the doctors said it was a cyst in my ovary or nothing there…..just cramps, it will go away. The 5th gyno I visited finally cared enough to help me. She suggested a laperoscopy. She anticipated finding endometriosis so cut a tiny slit at my belly button for the camera and a tiny slit above the pubic hairs for the instrument. Once inside, she discovered I had an inguinal hernia and actually took a photo of it. She closed me up and I went to a vascular surgeon for the surgery. THANK GOD for good gynos like her…..she has been my permanent gyno ever since. The two tiny cuts are completely not visable and it was an in and out procedure. Don’t be scared to do it…you will heal up very quickly and be able to hopefully see what’s really going on with you. You need to do it if you have pain……you need to find out what’s going on and at the least, rule it out. Good luck.
Thanks guys – Shelley & Amanda
Those comments really do give me hope and confidence. I still haven’t decided on the Laparoscopy. But i will soon. Endo pain is really frustrating. I’m losing my appetite to eat, feeling nauseous every time i try to put something in my stomach. Then there’s the constipation, that’s worse. I try to overcome the pain so I can work and hang out with my friends and family but it still overcomes me. I dream of having a great family someday but this pain seems to block every chance of that happening.
Anyway thanks again everyone 🙂
Hi my name is Marcie. Have the surgery!!! It was so worth it but unfortunately the pain will come back with time. I did have a painful recovery though. The trapped air from the surgery traveled into my shoulder and felt like someone was drilling a hole in it. My suggestion to you is that after you have the surgery, walk around as much as you can and elevate your legs/feet whe lying down. This will help you have a faster recovery. Put a chair by your bed to help you push yourself up and if you live in a 2 story house, walk down the stairs backwards since this uses different muscles (not your tummy muscles). This helped me with my laproscopy and csection surgeries. Hope this helped and good luck!!
Hi I’m Jasmyne I’m 19 && I think I may have this after reading what’s above since I was about 15 I’ve been have stomach pain leg pain && Severe back pain && every time I went too the hospital they just tell me “oh it’s your period your fine” but this isn’t just once a month && for the passed for days I’ve been having on going stomach pain & back pain and the leg pain comes && goes but hurts when I try too walk so should I go back too the hospital with me new found knowledge?
Hi! My name is Marcie. Unfortunately the only way to know you have it for sure is through laproscopy surgery. Some doctors can be jerks and not want to listen to you. My suggestion is you take your mom with you (since some doctors might not take you seriously since you are young) and demand that you be tested for endomitriosis! My symptoms are EXTREME cramps that come in constant waves. My lower back feels like somebody bashed it with a hammer. I feel hot, dizzy and very nauseous. My thighs feel very weak and I’ll get diarreah. A new development is horrible sexual pain that comes during and right after sex. My doctor that diagnosed me listened to my symptoms and performed a pelvic exam that hurt! She had to follow up with an ultrasound but warned me that it was just for insurance reasons so that they could move to the next step…surgery. Apparently endomitriosis does NOT show up on ultrasounds. My doctor is the best doctor in the world! She really knows her stuff. Good luck and I hope you get answers!!
Hi everyone, I am having similar symptoms. Extreme pelvic pain lower back pain, vagina goes into what I can describe as electric stabbing pains. Leg pains. Urinating every hour. Bloated stomach & Nausea. Painful periods some bleeding after sex. Very tired all the time. I have been seen my gp as these symptoms started a few months ago but I now have them all together. The nights of rolling around in pain I couldn’t take any more. My gp ordered the CA125 straight away which has come back within normal levels. On internal examination she felt something on my ovary. Abdominal & internal scan revealed a 4.5 cyst on my ovary. Relief as I finally thought I knew the problem however the lady said I shouldn’t be in so much pain and that nothing us usually done with a normal cyst that small. I’m still taking painkillers every day & due to see GP to discuss results receptionist said results nothing to worry about. I have had a month off work already and really can’t go back with this pressure feeling like my insides are been dragged out. I’m thinking maybe I have endiometrious as well. I’m dreading seeing my GP for her to say I’m okay to go back to work & there’s nothing to worry about.
Any comments thank you.
Hi, I have had endometriosis for the past 16 years. I have been on constant birth control pills. They would work for a couple of months and then I would be put on another pill. I have tried constant pain killers and have been recently told that I could only be on Tylenol based products because of my stomach. I had surgery about seven years to remove some of the lesions. I had my son two years ago and was told that I had about two years left to try and have another baby. I am only 32 years old. I have been through it all, countless er trips only to be told nothing is wrong with me. As I sit here and write this, I am in so much pain, it feels like someone is taking a knife and slowly twisting it in my stomach. This panelists has been off and on since April (my longest yet). It is just frustrating because no one knows what I am going through. My husband has been very supportive and helps me out when he can. Just know that there are people out there that have experienced what I am feeling is a relief.
Hi, well I have had a very emotional time of it over the years. After having my son in 2000 I developed the pains, had difficulty walking and gettin out of bed. 2 years later and god knows how many visits to my GP I was told the pain was all in my head and it was just my body getting back to normal after havin my son. We moved house to be across the to from my parents so they could help me too, however people that saw me told my mum I was anorexic as I was a skeletal 6st 2 🙁 no matter how much I swore blind I wasn’t the more I wasn’t believed…. Until one day when my son was 3, I kept him home from nursery one day and a friend came to visit, she found me on the floor collapsed. Took me straight to the GP, who by this time had died and his son taken over, and he rang directly for an ambulance. They put me on a morphine drip for the pain and took me for X-rays and scans, all of which came back normal. After 10 days of being unable to move due to the pain the consultant eventually said that he was going to take me into surgey. When I came round afterwards I was told I had died on the table and am very lucky to be here. They found I had one tube embedded inside my bowel and the other stuck to my stomach lining. Both were enlarged and full of pus. I had cysts on my overies. He couldn’t use the tools that he had and ended up opening me up to save my life, he stated he had to man handle my bowel as he couldn’t get into the part with tools to release the tube. I was stuc in bed for a further 10 days hooked up to morphine, had feeding tube from my nose into my stomach and catheter 🙁 every day my consultant would come and sit on my bed and try to make me laugh with farting jokes as a sign of my bowel kicking back in after being man handled would be a fart. If this didn’t happen within 14 days there was a 98% chance I’d have to have a colostomy bag 🙁 thankfully on day 10 it happened 🙂 that was the point they started to help me get back on my feet. I was very ill for several months after and went for a 6 month review, my consultant was off on holiday so had a different consultant. He was extremely rude, and rubbed his fingers and thumb together stating if I wanted any more children I’d need plenty of money. Not a very sympathetic way to break news like that. I came home and broke my heart. A year later I was still getting the pains and once again got rushed into hospital. I signed a consent form for a hysterectomy but my original consultant said I needed a scan, he didn’t know why I needed yet another one but something was telling him I needed one, they found I was 7 weeks pregnant. He was astounded as he also believed after the trauma my body had gone through I wouldn’t have any more. I was constantly monitored from that day through to the day I had my 2nd son, I call him my little miracle. Since then I am now a healthy 9 and a half stone, size 12/14 🙂 my youngest son is now 8 years old and I haven’t had any problems since….. Until I got up this morning. I have that same pain through my abdomen, back and legs 🙁 I’m now frightened that after all those years that it has resurfaced. Rang the doctors and can’t get in to see him for another 2 weeks even though all the staff know my history 🙁 if it doesn’t go by tomorrow I think I’m going to have to go to A&E because I do t think I can cope with these pains again 🙁
hi everyone hope all ok just to update you all. been to the docs again saw a lady doc this time very nice and understanding, did feel like she was kneeding a piece of dough when examining my stomach though. I reckon she could of got a least a dozen rolls out of me by the time she had finished feeling a bit sore now. well guess what the next step is yes you have guessed I have to go through the whole process again scans, bloods, ect. now I am feeling fed up to put it lightly, I feel what is the point in all this ive done all this over a year ago and got know where. im sure ive been here before I feel like telling them where to stick there scan probe I might as well cope with this damn illness on my own, Im not getting any answers why cant they just open me up and tell me where it is and try and take it away all this messing around and wasting my time I dont think I can go through all this again feeling very low now will catch up soon love Tina.
Hi everybody! My advice is to NOT take ibuprofen to help with the pain. I have always had horrible periods. When I was 20 yrs old, a friend told me that if I took 4-5 ibuprofen pills when I got my period, that it would alleviate my pain so quick! Well I tried it and man did it beat taking the bottle’s prescribed amount which still left me in pain. When I was 29 yrs old, I was diagnosed with endomitriosis and found out that taking all those pills on the first day of my period ended up causing me to have chronic ringing in my ear (tinitus) which is another nightmare!
Anyway, I always thought that my period pain was normal…it is called the curse! If I don’t take medication as soon as I start cramping, I am left in the fetal position. Heating pad does help too btw! Well it wasn’t till a year after I got married that a new problem arose. SEXUAL PAIN!!! From one day to the next, this pain began. During sex I was in so much pain that we couldn’t finish. In fact, I crawled to the bathroom and through up in the sink simultaneously as I pooped diarreah (sorry I know this is tmi but it told me something was very wrong). I remembered feeling bad as well because my husband wasn’t helpful and even seemed annoyed. We tried having sex again a few days later and he got mad at me because the pain was so great that I’d make him stop and try from different angles. I saw a doctor and right away she said she thought I had endomitriosis. I had laproscopy surgery a few moths later and she was right. Boy did my husband feel bad! After the laproscopy, I noticed that sex and my period got better by 3 mo post surgery. Then I got prego with my first child. Hooray!!!! I was so freaked out that I wasn’t going to be able to have kids. By the time my son was 1 years old the pain was already back. Now at age 35, I have 2 kids, the pain is getting worse, and my periods are worse then ever. I can bleed through a tampon and pad and through my pants in 2 hours! My flow is so unbelievablely heavy now. I can’t even work on the first few days of my period because I’ll bleed through my clothes. I’m so sad because instead of sex being enjoyable, it hurts so bad 90% of the time. I’d like to have a hysterectomy but I want 1 more child. However my husband said he’s done. My dr prescribed me birth control pills but I haven’t tried them yet. I’m in my final semester of graduate school and am too scared to try them during this important semester. I have heard from friends that they turn you into a raging b$&?!, gain weight and pimples. I already have enough stress! Have any of you had success with birth control? Did any of you have a hysterectomy and gain weight because of it? I do find running helpful with cramps…but that’s all that it helps. I have a friend that does the Depo shot that has immensely helped with her pain, but she gained A LOT of weight. I don’t know what to do.
hi guys,
sorry to bother you all, i have just turned 18 there and for many months probably about a year and a half just after i unfortunately had a miscarry, i have been experiencing problems with my stomach, back and ovaries. Constant stabbing pains that is very uncomfortable that a want to just go in a ball, seems to be left side mostly, my back hurts and my periods are dead irregular i would only get them once everyone two – three months and it’s only for one day! I now understand a little from reading the top part but i am struggling a hell of a lot with the emotional side and all the worry that a might not be able to have any children. Nobody i know will never understand what am going through they all think am crazy but that’s because not one of them have been through it themselves by any chance would someone message me and maybe it would help speaking to someone who has the same problem. Thank you !
Hi everyone I have been seeing a gastronologist for severe stomach pains with no luck. I have occasional diarehia mostly constipation and when my period is present lower pelvic area pain resembling the pain of contractions. Tired and miserable most of the time bleeding sometimes after sex, very heavy periods unlike I have had in the past,constant bloating,constant need to urinate, some nausea but yet no one seems to be able to figure out what’s wrong. Been reading on endo and seems very possible this is my problem. Any thoughts please share as I am starting to feel crazy. Lol. Thanks Lori
hi everyone. I’m so glad I found this page. I’m 23 but was diagnosed last summer with endo after having excruciating pain. I got my period very young (9 years old) and it has been awful since. I had the laparoscopy in August of 2012, within 6 months pain was back. if you have never been for a laparoscopy and are going, make sure to ask your doctor to “deflate” you as much as possible, the referral pains were unbearable. I went back to my obgyn for an exam, and as I’m in tears from pain he tells me it is back , to pull myself together, and tells me I will always need surgery. since then I have found an endocrinologist who specialized in fertility and endometriosis who I am going to see in a few weeks. I feel your pain out there. please make sure your obgyn is experienced and knowledgeable in how to treat endo. in research the past couple weeks I have found that during exploratory they don’t remove it all. which infuriates me. has anyone seen a specialist or has everyone been treated by an obgyn? also, is there any one on here who has a daughter or another family member that has been diagnosed?
I am 30 years old and have been suffering from Endometriosis since I was 14. I had such terrible pain when I got my period and flu like symptoms(vomiting, chills,diarrhea, fever) My mom and I would would tell my doctor that something was wrong and insist that I be checked out by gyn but she would dismiss us with ” its just her period “. When I was 23 I had surgery to remove a cyst on my right ovary and was diagnosed with Endometriosis. Since then I have been on birth control pills, lupron depot shot, and a second surgery for ovarian cyst. The second surgery found the Endometriosis had been in my intestine and my bowel as well as everything else in the pelvic cavity. I have been told children are not option and a hysterectomy is my last hope at relief from pain. It is so hard to function emotionally and physically. My employment suffers and in turn my quality of life suffers. I have been robbed of my dream of creating life and slowly be robbed of my own life. It makes me so depressed and no one understands the disease so they treat you like you’re being a drama queen. This disease can take so many other forms. I have been to the hospital countless times thinking I had a kidney stone, or something wrong with my stomach or back just to have then tell me there’s nothing wrong with me. It’s so frustrating because not everyone understands the magnitude of this disease
I had a total hysto last year in july at the age of 31. after endless treatment which didnt work. i couldnt have children either so this seemed like a good option. i now feel amazing.. i didnt take HRT just herbal remidies for the hot flushes and changed my diet as now i cant eat fatty fried oily foods as it really makes me sick . just lots of green veg and fruit and now i feel fantastic . so there is light at the end of a very long dark tunnel.
keep positive
lisa
This is EXACTLY how I feel all of the time. Reading this article is so refreshing and I will definitely share this to try and help people understand what we all suffer with. Thank you for putting it into words.
I have been suffering for 6 years with pain in. My right side near my belly button . I had surgery to clean out all the fibroids, cyst, scare tissue. My surgery should have only taken a hour and half but I was in there three Ald a half I had so much to clean out. It has only been two months since surgery and I have a infection they can not get to go away and I still have that shooting pain next to belly button. Went to another doctor to see if it as something else and he said it was stilly endometriosis. I wanted to cry . I just had major surgery so how can it still be hiding in there. I am lost and confused. New doctor wants to put me on Lupron. Maybe they are wrong…. Maybe it is something else???
I’m sorry for what you are going through. I feel so relieved that there is a page that we can all come to to discuss our situations and that we have people here that understand what we’re going through. did you decide if you’re going to do Lupron? my doctor also recommended it. he gave me options if depo, Lupron, or surgery. I was terrified from what I’ve read about the depo and Lupron.
I am 19 and was diagnosed with suspected endo at 16. At 17 I had my first surgery which officially gave me my diagnosis, however due to the extent of the disease I then had to change specialists and have another surgery at 18. Since my second surgery I have been treated with synoral which causes menopause which I’m sure a lot of you are aware of! I am also on the pill and have the rod. However nothing seems to be keeping my endo at bay! I am a full time Uni student in my 2nd year and have recently started to use another drug to see how things go.. This makes study very difficult. If this drug doesn’t work I’ll be on to the next one but I am sure I will need another surgery in the near future. Only recently the random pain in the abdomen has started, before I only use to get painful/heavy periods and pain during intercourse. The fatigue seems to be getting worse as well. No one seems to understand how it affects me and I am hoping to get some support and advice from fellow endo sufferers!
Hi Tessa
I am 19 as well. I haven’t exactly been diagnosed with Endo as yet but every symptom points to that. With me its hard to work or even spend time with love ones. I’m on pills currently, hoping it will help. Its shocking how many surgeries you’ve done and still no help. I haven’t done any, because I’m scared. I’m trying with pain killers and other ways to get through with the pain. I understand how it affects you.
I hope this helps a little. Take care.
Once I get my infection under control I do plan on going on the medication. I have also read some scary stuff about it but I am going to take the chance. I also had a ablation done during my surgery. My mother and sister have had to deal with the same problems. Both ended up having a hysterectomy. I had told my doctor before surgery to take what ever he needed to. He never thought I was that bad. After it was all said and done he said he could not take my uterus due to all he had to clean out and it would have been to much trama on my body. I was mad he did not just take it. Now I still have to live this life. I write down everyday what I am going through in a calendar book so I can always know if something has changed in my body.
Hi My name is Samantha im 26 and after 10 years of extremely awfull periods i have looked in to endometriosis all the symptoms i have match, every month a week before my period is due i can barley walk leg leg pain and back pain get to intense. When i come on things just get 100 times worse, I suffer with depression and anxiety also and it has ruined my life for a very long time.
I decided to go to the doctors and was not happy with how i was treated, i told them i would like to be tested as i feel very strongly that i have the illness, they basically told me that i should just try for a child and the pain would go away?!? i was mortified they just gave me painkillers and sent me on my way.
Its been hard for me emotionally and i have lost friends sue to the fact they cant see my pain and think im lazy as i spend most my days in bed or i cant go out due to the pain.
I would really appreciate someone to talk to and guide me in the right direction and what i need to do please, any advice would be helpful samanthalouise.noone@gmail.com
Hi all
I’ve been reading some of the comments trying to understand the syptoms that most endometriosis patients suffer from however I can’t seem to find out what people actually do when they are experiencig one of the episodes of pain! My mother suffers from endo and its so hard to see her in pain every month. I feel helpless at the time and all we could do is take her hospital and let the doctors give her morphine! I’m trying to find out whether there are alternative ways of dealing with the pain AS IT’S HAPPENING instead of giving her morphine..
Does anyone have any suggestions? Ot anything they have tried? Your help will be greatly appreciated.
I have posted a similar comment below. Its so hard dealing with this disease. I have had to see several different doctors to get the right one to treat me. My friends also thougjt I was lazy… and it was really difficult to deal with. I have since learned that there are dofferent people who care about me and are worth my time. Its still none the less..hard. I think one of my worst struggles has been the tiredness and weigjt gain. I wemt from a healthy 115 pounds to my heaviest at 155. (I’m only 5 foot tall). It felt like I just woke up one day and had lost all my friends. . None of my cute little clothes fit anymore.. and I even felt less attactive to my boyfriend (how could he be attacted to the same girl that use to be so little and now looks like an ogre). The fact is there’s so much emotional damage during thos disease that it is just that much harder. My advice would be to except those things you cannot change… and to try every day to find a doctor who jas espirience with endo. Only tjey will understand. And its okay to feel how you feel.. and talking sometimes to a therapist or someone really helps too. Good luck!
Try repossitioning. Laying flat on the back with knees bent into a butterfly possition.. hands resting on inside of knees opens the pelvis and relieves a lot of pain. Yoga possions such as tje “baby” postion can also help depending on the location. Heating pad are also very comforting due to tje fact heat expands nerve walls to ease pain. Hope this helps
Hi, my name is Ali. I had terrible pain in my pelvic area and found out I had endo when I was 19. I only take over the counter anti inflamitory, and pain medications like acetaminophen for pain and Birth control that my doctor had me take. It’s only for about two weeks out of the month that I have sharp stinging/ burning pain in my vaginal and anal area all day for until I start my period. I feel bad though because I have heard worse stories. My internet friend was recently diagnosed at a late age, I’ve tried to talk to her about it so we can support each oter but seems embarrassed almost to talk about it. That’s what it feels like to me. I feel bad for her though because she has a worse case and I’d love to support her but it seems she isn’t into the support. Thank you for posting this, I feel like I’m not alone.
Hi Ali
I had endo since I was 17 and I’m now 32 after several op’s and trying every possible pill out there! I finally had a full hysterectomy last year.. But unfortunaty it’s come back now in my pelvis so I’m going for an MRI next week.
Keep strong and you just have to accept it and keep going but hopefully you will be lucky and they can get rid of it ..
Lisa
does anyone get a pain that feels like its in your rectum, along with bad back pains and pelvic cramps? it also hurts me horribly to go to the bathroom. whether im urinating or having a bowell movement it hurts so bad i have to grip the sides of the toilet seat to keep from screaming! anybody else deal with this?
I have this similar pains. Real deep in my rectum sometimes… almost like if I strain for a bm… that my rectum will fall out (sorry for the graphics). This is common with endo… its also common to have IBS like symtoms as well… which includes bousts of diarrhea follwed by days of constipation.
I have pain in my rectum when I’m on my period. It is honestly the most painful thing ever. You can’t even move. I apparently have IBS but i’m starting to think it’s endo because I don’t have the symptoms of ibs.
My Dr said those pains were from endo on the bowels and/or the rectum itself. I have it there as well. 🙁
Yes, I have the same pains! My doc attributed it to IBS too, but I think it’s endo. Have you had a lap yet?
I was “offically diagnosed” in May. He burned off all he could see. Now I’m at home on medical leave from work, waiting on my hysterectomy in 2 weeks. My endo flared up after surgery so bad that I can’t stand, lay down, or sit comfortably. I walk with a cane. I am only 26 and have no living children. Endo has cripled me by attacking my bowels, sciatic nerve and all over my pelvic region. It heartbreaking, depressing, frustrating and embarassing. Thankfully I have the best man ever by my side. I know the feeling of hopelessness, loneliness, and that no one understands your unexplainable and unbearable pain.
My husband has sat outside the restroom and listened helplessly as I scream and cry on the toilet. I understand competely.
I am sammie… 25 year old female and have been diagnosed with reoccurring endometriosis. I have had a cartorization perfomed in 2011 and felt so much better after the lapro. I even lost some of the dissapointing weight gain that comes along with endometiosis..due to fatigue and emotional disturbances. I felt like it was a fix all and tjat it wouldn’t come back. Unfortunatly… for almost a year now… I’ve been experiencing that aweful pain that literally takes my breath away. I have been trying to control the pain without narcotics and with perscription strength ibuprofen (which eases the pain… but not a fix all). Doc is concerned about the pain and is talking about another lapro here in the next 4 months (was just changed from nuva ring to mercette contaceptive… trialing to see if it eases symptoms). The pain is absolutly unbareable at times. I’m a nurse and work 12 hour days and the thought of even working under this kind of pain is enough to discourage anyone. I seem to really have a problem with tje emotional aspect of this disease. . Similar to tue comments I have read on this blog. There were days I felt like no one understood the pain.. amd how tired I am. I literally started to believe I was “going crazy” and felt as if I was becoming pyscotic. Having this disease makes you feel very alone and misunderstood at times. Almost like people don’t believe u when you have a flair up.. and relationships suffer because u either have pain or are just simply to exhausted to wanna do anything. I want people to know they are not alone in this world. And that this pain and stress is most def real. There is always someone there for you.. and someone who loves you… and don’t be discouraged… we all just gotta keep on keeping on.
hi every one not been on here for a while, I decided not to go for a repeat on the scans bloods etc I thought it was a waist of time. I remembered back years ago that I was suffering from really bad PMT my doc prescribed me evening primrose and it worked. as I still have bad PMT I worked out that when it kicks in which is just days after my period it aggravates my endo so I decided to go back on the eve primrose I have been on it for 3 weeks and not had any PMT and only very slight twinges of my endo .so fingers crossed that the eve primrose will control my endo pain.I take a 1000mgs a day and I truly feel a lot better does any one know why this helps gyny problems will catch up soon love TINA.
Sadly, this is so true. I’ve suffered with endo for 8 years now, probably much longer but that was when I was officially diagnosed. I haven’t been able to work in a couple years which has further complicated my already severe depression. I have lost many friendships and husband because of this disease. Although I have a wonderful man in my life now and found an online support group (forging a few great friendships with endo sisters I have never met in person), I still struggle with this wretched disease mostly alone. I have been given a deadline to have kids before a hysterectomy and even that is proving to be such a difficult task. I have been blacking out mulitiple times a day for about a month now because the pain is so severe. I’m on a constant stream of narcotics, anti depressants, muscle relaxers and antiinflammatory with no relief of my pain or depressive symptoms. This disease steals so much from the women with it and doctors do very little to help. Unless you have a chronic pain illness, you wouldn’t be able to even begin to imagine the daily struggle we endo sisters battle every second of everyday. I was once the most patient and positive person, but now I’m extremely irritable, impatient, negative and have lost hope for ever being to function “normally” again. I hate this disease for everything it is, what it does not just physically but emotionally, and what it takes!
Pain caused by Endometriosis has completely shut me down
this information. I,m 58 yrs. had hysterometomy about 15 yrs ago,for endometrosis, I still have a lot of pelvic pain, I still have my ovaries, Have fibromylagia,lower back pain,pelvic bone pain, any help Please
hi ym,
If you have fybromyalgia & severe bone pain along with endo I would advise you to get a vitimin d blood test done immediately,I suffered terrible symptoms for years just like yours & was also diagnosed with fybromyalgia my rheumy then had the foresight to test my vit d levels & they were in single figures where normally the count should be somewhere between 75-150! he thinks I have been severely deficient for most of my life but its not until many years later the horrific symptoms start,a vit d test is cheap & easy to do so please ask your gp to arrange it,
if you are deficient your doctor will give you a vit d injection to boost your levels & then supplements daily,it takes several months to get your levels back to normal & in my case it took nearly a year but I no longer get that terrible pain in my bones especially my arms legs & chest & my fybromyalgia has all but gone (because fybromyalgia symptoms & vit D deficiency have almost identical symptoms) many doctors overlook this,it is also known that vit d deficiency causes hormonal imbalances & very painful periods which I think may contribute to getting endo to begin with,
I hope this helps you good luck xx
I am wondering if I have endo. I started getting my period at age 13 and it was not until i was 17 when I started getting weird pains. The pain i felt was literally in my uterus, not my abdomen like everyone else says. The day of my period now I feel so sore down there I know for sure I am getting it. My period is not crazy heavy like most people say and I don’t pass out from pain. I do get bad cramps though, that last 1 or 2 days. Ever since that, I’ve also had stomach issues/bloating and just this overall feeling of not being well and healthy like I used to. Also, this pain for me is 24/7, not just when i’m on my period. The pain is just overall discomfort and burning and aching. I can’t describe it. I cried to my doctor that I think I have endo and he just smiled and said I don’t and recommended birth control. Birth control did not fix shit. I even said I wanted a laproscopy and he said I was getting ahead of myself. Pretty annoying that you finally get up the courage to tell your parents you need to go to the doctor only for your doctor to dismiss you and make it seem like you’re fine. I’ve visited this doctor multiple times coming back after trying each failed thing and at one point i gave up and said no more since he was not taking me seriously and his nurses were rude. I’m on here to hopefully gain the courage again to seek a new doctor.
Hi Paige
first of all I would like to say I am disgusted at the patronizing way your doctor treated you but unfortunately most of us have had an appointment with a doctor where they have been very dismissive – I know I have even though I later found out I was riddled with it!,its simply not normal to have that kind of pain all the time & its never normal to have severe pain even at the time of your period, but from what you describe it sounds to me that you could have endo, or you could possibly have fibroids they cause the permanent type pain within the womb you are describing but over time they do cause heavy bleeding too
I would advise you to not give up & keep going back to the doctors until you find one that takes you seriously & gets to the bottom of whats going on,please dont worry there are lots of treatments available & help is out there you dont have to suffer alone,please dont give up & take care xx
Thank you for your help. I am definitely going to look into it. I just don’t even know what to say when I call, like hi I am looking for a new doctor and have all this pain and no one seems to be able to help me. I think I’m going to schedule a pap smear because I never had one, and ask them if they specialize in endometriosis since I think I have it. Sometimes I feel like I overwhelm my doctors and sound like a crazy person. Im just so anxious for someone to help me and start running tests because every doctor ends up just saying “you’re fine.” I’ve gotten an ultrasound about 2 years ago and they found nothing but i’m reading online an MRI could find fibroids. I also thought the cause of my pain was tight muscles or pelvic floor dysfunction but apparently endo could cause all of that because of the pain.. it just seems like a huge list of symptoms and different diagnoses being put out there. My doctor recommended two years ago I undergo pfd therapy but i was only 19 at the time and felt extremely embarrassed by it. My actual gyno told me it was a bad idea and that i actually needed to “relax” my muscles. What were your treatment options that worked successfully and what were your symptoms if you don’t mind me asking?
Hi Paige,
I dont mind Ive had this ever since I started my periods at 13 but I was diagnosed when I was 21 (im now 39),I used to get a very heavy dragging almost throbbing pain around about where the womb is which was constant & then the pain would build & worsen just before & during my periods where it was so bad I would be on my hands & knees,it also used to hurt when I urinated & sometimes too when I had a bowel movement & I would get sharp stabbing pains in my bottom,my menstrual cycle was also irregular – sometimes heavy sometimes not & I would also get pains deep in my groin,in the bottom of my back & down my legs,but it depends where the endo is as to where you get the pain,because I have always had it on my ovaries the middle of my cycle when I ovulate is always painful & I often bleed at that time too between periods (if you have pain down your legs that is usually a good indicator that it is growing on the ovaries) as ovary pain is always felt as referred pain down your legs,it also causes severe fatigue
As for treatment over the years I think ive just about had the lot! lol the only way you can tell if its endo is to have a small surgical procedure called a laporoscopy where they make a tiny cut in your tummy button & look around the pelvic region with a tiny probe/camera that is the ONLY way to diagnose it as scans just dont show it,once its confirmed depending how bad it is they will either start you on hormone drugs to stop your periods so it recedes & the endo stops growing or they remove it surgicly using a laser,over the years I have had surgery 6 times & had my last op in 2005,since then it has slowed down & I find it easier to cope with & have had no treatment since then other than pain killers,I have found the most important thing is to get the pain under control because it drags you down very quickly being in constant pain & I have found tramadol to help the most,as for how to approach your doctor I cant advise you procedures if you are in the US as Im in the UK but you would need to find a gyni who specialises in doing laparoscopys cause thats what you would need,I know exactly what you mean when you say you think the docs think youre crazy Im sure plenty of women on here have experienced similar things,all I can say is write down everything you want to say & keep calm during the appointment (hard when someones patronizing you I know) I would reccomend keeping a diary for a couple of months to see if a pattern emerges as to when it is worse & I think it helps to take someone along with you like a mum,aunt or partner who can verify to the doctor how much you are suffering because I found the doctors listened more if my partner was there telling them how bad it was & how it was impacting on my life,I hope this helps & please dont give up I remember thinking I was never going to live a normal life again but there is life after endo I promise you & even though my periods will always be painful because I now have so much internal scar tissue from all the surgery it does get better & you will learn to cope & still live your life I promise you,take care xx
I am about to have the laparoscopy to diagnose what I am 100% sure is endo… I feel like I had to convince my doctor and he wanted to take the easy way out by writing prescriptions for IC and IBS instead of putting 2 and 2 together. Does anybody else have all these symptoms and gotten a conclusive diagnosis:
Pain during and after sex
Pelvic shooting pain
Coccyx (tailbone) pain and shooting back pain
TERRIBLE ovulation pain that makes me nauseous and not able to eat
Constipation and diarrhea, alternating (and irregular stools)
Fatigue and trouble concentrating
Basically I am in pain 3 out of 4 weeks of the month, I just want it to stop, and I don’t think my doctor takes it seriously. He wanted me to see a GI doc before doing the lap, and so I did… both an upper GI endoscopy and colonoscopy came out clean, and so there goes $2000 down the drain when I TOLD him I think it’s endometriosis. This is wreaking havoc on my bank account, my body, and my mind. I am 23 and am going into debt to cover all this. Help!
I’m 26 yrs old. I had my scope to diagnose my Endometriosis in May of this year. I’m already in so much pain again that I’m having a hysterectomy done on the 26 of this month….yes, the day after christmas. My husband and I have no children. We have had 7 miscarriages over the last 3 years. It has aged me at least a good 5 years if not more. I’m on Dilaudid tablets and percocet for pain and still hurt. In my mind I’ve reached a point of feeling hopeless and depressed. Endometriosis is a viscious disease that can destroy your life and every relationship in it. If you do get diagnosed with this dreadful illness, find someone to talk to. Someone you can tell anything to, or get a diary. You do not want to face this alone.
My daughter is 16 yrs old and suffers daily from endometriosis, she has had 1lap surgery to remove 2cysts. We changed her diet to no dairy and no red meat, she started slow with yoga and is able to do a class 4nights a week. We didn’t know what else to do so we looked online and tried the diet thing. She is only 5foot tall and weighs 100lbs. I feel so bad for her and I always am by her side supporting her. Reading these posts made me cry, I feel so horrible for all the women here, it is so so painful and I can’t imagine what iit must be like if you feel like no one understands or believes just how bad it hurts. The doctors tried to tell her to take different types of birth control pills, they only made it worse, with that said the doctors have no idea what to do if contraception to stop her periods fail, they just shake their heads. So her and I stand tall together and try so hard to do what we can to be pro active at home. The only reason the doctor did lap surgery was because I told him that my daughter asked me if it was ok if she became pregnant(she has a wonderful boyfriend of 3yrs,) and then have a hysterectomy, he seemed to get the picture at that point and said that he would remove the cysts. She has a lot of free fluid in her abdomen that really causes so much pain. She calls it “bubbles” and it is excruciating. She can’t sleep on her sides at all as fluid builds up and hurts very bad. So she sleeps on her back. She was on Advair and Symbicort for 6yrs due to asthma, I always wonder if that had anything to do with it. I weaned her off of those meds, that took 1yr to get her completely free of those medications. She does online school because she is in alot of pain most of the time, motrin and tylenol is what we use. If she sits for too long and then tries to stand it can get really bad in her sides usually the left side.
Thank you for reading this and I hope for at least tonight that you can be in a little less pain……..
dona and cheyenne
Oh Dona I feel so bad for you both,I was exactly the same at her age & I know how scary it is to feel that way so young – I remember thinking I would never have a life & suffered terrible bouts of depression & it must be terrible for you as her mum to have to watch her suffer like that – but there is hope…
even though it may not seem like it now,I went through my teens & twenties having every hormone drug you could think of with horrendous side effects,drugs to put me in a chemical menopause & multiple surgeries every 9 months or so,finally in 2005 when I was 31 I just couldnt take any more – the surgeon was now wanting to give me a full hysterectomy including taking my cervix & some lymph glands in my groin I was so ill I would have agreed to anything until I joined a forum where most of the women who had had hysterectomys done young had only had a few months respite & then it came back again & I thought enough is enough!
I discharged myself from my gynis care & refused all other treatments,one specialist had told me that the hormone eostrogen is what feeds endometriosis & makes it grow so I did months of research & stopped drinking mains tap water & went on to drinking only bottled spring water – what most people dont realise is that eostrogen enters the water supply from all the women on the contraceptive pill,water treatment cleans the water but does not remove hormones from the mains supply,
I also stopped eating meat if it wasnt organic in origin you wouldnt believe the amounts of hormones that are pumped into animals that enter the food chain to make them grow bigger quicker – especially chicken,I started taking 2000 units per day of vitimin D as most people are deficient without knowing it & if you are it makes your periods extremely painful & lastly I started using a progesterone cream called serenity to correct the imbalance of many years of having too much eostrogen & since I started doing all of that my health has improved to the point of where I dont have endometriosis any more!
I am now 39 & the endo has not come back in these last 8 years whereas before it was chronic,I still have painful periods & always will because my insides are full of scar tissue from all the surgeries & nothing can be done about that,but they are manageable with pain killers & I have my life back again I only wish I had learned all this when I was young rather than let all those doctors treat me like a guinea pig & Im now so glad I refused the hysterectomy & maybe this could help your daughter too…dont expect miricles over night it will take time but I found I began to improve after about 3 months I dont know if my endo will ever come back or not but it hasnt so far & because of all the surgeries & drugs I was warned that I would probably have an early menopause which I am now entering but at least its naturally & I have heard that after menopause endo diminishes anyway due to a drop in eostogen which Im thankful for,I only hope maybe this could help your daughter because I really do remember how I felt & I feel very bad for her bless her,take care xxx
hello again folks well this is over 5 weeks now taking the eve primrose I have had a period and only experianced a few twinges of my endo. my side has had a dull ache today but have not have to reach for the ibuprofen as frequently as before when I was popping them left right and centre. I do wonder if it is the lull before the storm and my body will get used to the eve prim and my endo will kick in again. i am hoping that the eve prim will keep my pmt at bay and control my endo fingers crossed will keep you all updated. see you soon. TINA.
I have had endometriosis for years, but it was only diagnosed last year. I get this feeling in my pelvis like I’m rigged up to one of those machines that tug on your muscles to give you a work out. My lower back *aches*. Nobody seems to fully understand the pain, and when you do open up to people their advice is usually “well, go see a doctor again”.
The last time I went to see a doctor about this, he told me all he would be prescribing to me were tablets for a cramping stomach – as in diarrhoea pills. He treated me like I was displaying drug seeking behaviour. He told me that those tablets is what he prescribe to his own wife, so I shouldn’t really complain. Since then I have realised that there will be no assistance from (and no offence here) men who really don’t seem to get it. I take my evening primrose oil daily, as well as Fenamin for when the pain gets too much. Ladies, you need to find what works for you and do it. Don’t rely too much on what doctors say ito shooting down your symptoms. Nobody knows your body better than you do. I had to argue with my gynae to get him to take my concerns seriously, and the things that were discovered during my laparoscopy were shocking: fallen and blocked fallopian tubes, a cyst and endo (I have been suffering with an infection for years, again, if I had been a little more assertive way back when and not just suffered in silence, maybe it wouldn’t have been so bad). I would “menstruate” on the contraceptive injection, and none of the doctors I saw during that time put two and two together. So please, if you have been to see a GP and you aren’t satisfied with how he handles your pain symptoms, keep at it.
Heya, Im 26 and have been struggling with endo + pco (stage 2) for seven years and really love what you have written. I always describe my pain as “guts in a vice grip” its interesting how it can be described and how others experience the disease. Next time somebody asks I will send them over to this page however I have NEVER been asked what the pain feels like before only “where” by Doctors. Thanks again
For a year now I have been living with a pre diagnosis of endometriosis. 6 months ago my gynecologist performed a laparoscopy to determine whether it is definitely endometriosis, with consequences. My surgery had severe complications due to subcutaneous emphysema. The surgeon went into the wrong area and my body filled up with gas. Anyway due to not knowing whether it is indeed endometriosis I Had 6 months of prostap injection. The pain has gotten worse. Down both sides of my pelvis start by feeling like I’m being stabbed several times, pain shoots down my leg and if I’m standing or sitting it feels like someone has given me a dead leg. Lower back ache most of the time, the last month ive experienced a lot of pain in my bottom. When I sit on a chair and try to put socks and shoes on I have heavy pain below my coxis. My body feels like it is bruised, hurts and aches. When the pain gets worse, my stomach bloats like I am 9 months pregnant.I struggle to get out off bed due to being in pain. Ive been experiencing what feels like brain freeze in the middle of my chest. Also if I eat or drink anything it feels like its sticking my chest as I keep vomiting in my mouth but its acid. Ive nearly crashed my car when I have painful episodes as the pain can be extremely painful. It feels like someone has taken a hot poker and stabbing me with it, then drag it up and down, wrap and yank. The headaches are more frequent, the my body fees like it is on fire starts from the inside and works its way out. Body full on wringing with sweat. Sex is the worse part, my husband cant penetrate me slightly without it feeling like there is a blockage and he is forcing it down. The pain feels like someone gas booted me in the privates and sheer pain shoots down my leg. My right side is the worse of the two. It is really hard to describe the pain, but my quality of life is so affected. I am now waiting on an emergency full hysterectomy.
THANK YOU FOR EXPLAINNING SO WELL EXACTLY HOW YOU FEEL!!!!!, I THOUGHT IT WAS ME WHO WROTE HOW I FELT IT MAKES ME REALIZED THAT I’M NOT IMAGENING I ALREADY BOOKED FOR A HYSTERECTOMY, I NEVER THOUGHT ENDOMETRIOSIS CAN BE SO EVIL AND NASTY!!!!!, I PRAY TO GOD THAT THEY FIND SOMETHING THAT CAN HELP US ALL 🙁
Hi Lady’s my name is Leticia Williamson and i have endometriosis to i have very bad pelvic pain it feels like a lot of hot needles are trying to shoot out of my stomach i have very bad pain in my right leg its like a stabbing kind of pain and also have pain in my lower back unfortunately like some of you guys have said no doctor seems to understand it and if you ask for any pain medicine they treat you like a criminal fortunately for me my pcp was able to reffer me to a pain specialist , but also told me something very scary about getting a hysterectomy to cure endometriosis well he told me that getting a hysterectomy doesnt always cure endometriosis because if you get it when youre so young youre going to have to be put on hormones wich could bring up the endometriosis again .
tomorrow is the day i am returning to the doctor and asking for a new doctor. i havent been writing down my symptoms but i know that there is no pattern to them. i am always in pain, mostly right before bed when i have to stuff a pillow between my legs to stop the aching in my pelvic area. i would describe it as having your uterus mused together, you cant stretch or feel comfortable without feeling this tugging, aching pain. the pain comes and goes depending on how i sit or if im walking, but its always a struggle to get comfortable. it sucks that you cant even describe the pain and doctors only look for heavy periods as a sign of endo, which is not something i really have. i’m hoping because ive been pursuing this for so long now they will say “okay time for laproscopy” instead of dismising me again. i still also have to get a pap smear. i will keep you all updated on my journey!
Hi paige my name is leticia i just wanted to let you know that i have a friend that was diagnosed with endometriosis, and she didnt have heavy periods and they were also irregular and when she did have a period they where very light so i dont think you need to have heavy periods to be diagnosed with endometriosis
This was incredibly helpful. It gave a voice to the last 20 years of pain associated with Endo. Thank you!
so i went to the gyno today and saw a new doctor. she said four years suffering with my symptoms is way too long and decided she wanted to give me a laproscopy. i am nervous because it is a surgery and just wanted to ask all of you how it went. is there any prepping you have to do? recovery time? and when do the scars fade? the last thing i want is scars on my stomach in a bathing suit 🙁 also my doctor was a little mad i didnt try birth control long enough or use an antideppressant for chronic pain.. have any of you been prescribed an antidepressant for chronic pain?
don’t be nervous. I know you’re in alot of pain but try not to take painkillers leading up to it, it thins the blood, and like you say, it is surgery. that being said, i had been taking heavy painkillers regularly, and while i bled heavily during the operation, I was still okay, so if you have taken and its pretty recent, don’t panic. it took me three weeks to recover (but I didnt’ just have endo) AND I’m a bit of a wimp 🙂 never been prescribed antidepressants for chronic pain.. they cut my big cut where it wont be seen. the other cuts are small, nothing to panic about. you will be so glad you had the lap. keep us posted 🙂
You probably already got the surgery but figured I would reply anyways. My doctor was the best, the only scar I have is a wee one down in my pelvic region, you only notice it if you are looking for it and even then panties/bikini bottoms cover it. She was able to go in my actual belly button so no scars on my abdomen, my belly button looked huge for a couple days after surgery but then went back to normal. It took about a week and a half to recover for me, but I imagine its different for every person. Also, to hell with your doctor being mad about the BC. I have tried every single pill out there and they all made my endo worse on top of making me feel like a crazy emotional wreck. I have also tried the nuvaring and it made me hurt so badly all I could do was curl into the fetal position and scream. My husband came home and found me in that condition, I couldn’t even talk to him because the pain was so bad I couldn’t think, move, or even form a coherent thought. I tried the depo provera shots, they are the only thing besides laparoscopy that seemed to help but the side effects were not worth it. The depo shots basically trick your body into thinking you are in menopause, so you have hot flashes, the risk of loss of bone density, mood swings (not as bad as when I was on the pill but according to my husband I was still a raging luatic lol), and I gained 50 pounds in 6 months in spite of the fact I eat healthy and exercise. I am on the Mirena IUD now, no side effects and as a BC its great but my endo is getting really bad again. Its only been 2 years since I had my laparoscopy but guess I will have to get another.
I haven’t been on anti-depressants, my “therapies”/ways of coping have been having a great support system (I have educated everyone close to me about this disease, thankfully they all listened and have been understanding when I have to cancel plans because of pain), finding groups on the internet of other ladies with this disease (sometimes you just need a good vent session with others who know exactly what you are going through), and running/exercising when I can not only because of the endorphins but also because its a small victory knowing in spite of how it feels some days, I DO have some control over my life and body.
Sorry for the long reply but figured it may help you or someone else.
Hi…my name is Cara and I’m turning 17 this year. (Please forgive me If I have bad grammar or horrible english) I really don’t know where to start..Umm..I had my first period when I was 11, and the painful periods started when I was 13. It lasts about 6-8 days. I’ve been to the E.R twice because of passing out from the pain. It hurts so much..I’ve had 3 different doctors and they all said it was normal..just dysmenorrhea..but I don’t see girls my age, passing out every time they have their periods. They prescribed medicines..nothing helped. My pain starts AFTER I have my period. I don’t know whats wrong w/ me.. I get diarrhea,cold sweats and nausea. I miss at least 4 days of school every month..I’ve missed a lot of things. My family and friends don’t seem to understand how much it hurts.. Everytime the pain starts, my heart starts racing, I’m unable to move or talk..too scared to eat. I don’t trust doctors anymore, I feel like giving up. Should I go to a different gyno? Do you think I have Endo? Please help me.. I’m so confused.
I have been the exact same way. I’m 19 now and i have been having extreme periods since I was 13 too and the doctors always dismissed it and it wasn’t until I did a lot of research on endometriosis and actually pushed my doctor about it that I actually got heard. They would always tell me that it was very unlikely that I had anything like endometriosis and that it was just part of being a woman. It’s NOT! I completely agree no one understands the pain at all. You really have to harass your doctor about it in order to get the proper attention on it. Make sure that you do a lot of research and write down every single symptom you have and make sure the doctor knows it because sometimes they miss something or don’t ask enough questions to know exactly what your feeling. I harassed my doctor for a year and now I’m on a waiting list for laproscopy surgery. It’s time consuming but be sure to get the help you need! Good luck!
I get abdominal pain, I had my back went out and my ovaries hurt so much …..specially when I’m going to get my period ……. I also get severe pain when I’m on my period, to the point that when I sneeze it hurt I have to hold my stomach so it won’t hurt!!!! Is that symptoms of endometriosis?
I am 22. I was diagnosed with endometriosis just before my 20th birthday. I had complained of horrible periods since I was 11 years old. I went to my PCP for my yearly, and I had an abnormal pap. They kept insisting I come back every 3 months to see if anything changed. I finally became fed up and scheduled an appointment with a gyno that I knew was one of the best in my area. I had many procedures done. She first thought I had pco after an intravaginal ultrasound that showed several tiny cyst on my ovaries. After blood work, that was ruled out. The next step was laproscopy. It was then determined that I had endo. I had scar tissue removed from my uterus and ovaries. I was then put on bc continuously without taking the sugar pills.I will go months without a period. I am having severe pain as we speak due to being on my period, but I also have random pains throughout the month that can not be stopped by common nsaids. Right now, I have severe stabbing pain in my groin and lower back. I also experience a pain that feels like someone has stuck a knife in my vagina regularly. That pain is almost impossible to get rid of, and it makes it impossible to sit. I have taken a midol and am sitting on a heating pad, but there seems to be no relief. Living in a state where it extremely common for people to doctor shop for pain killers, it is really hard to get a doctor to prescribe anything stronger than naproxen 500. I deal with the pain without taking any type of pain killer usually. I have given up on taking otc painkillers due to the fact they do no work. It is rough dealing with this pain. I am currently a grad student, and I had to miss classes today due to the severe pain I woke up with at 4 am this morning. I have lost countless hours of sleep due to pain. There are days that I can’t get out and do anything due to fatigue. Oh, and my sex life has been put at almost a stand still, because it is almost impossible to have anything touch the inside of my vagina without excruciating pain. My bf feels so bad when I start to cry from the pain. I try to explain to him that its not his fault, but I know he still feels guilty. That is about everything I experience on a day-to-day basis living with endometriosis.
Hi there Melissa, I have a similar story to yours. I’m 21 now but a little over a year ago I started to experience very sharp stabbing pain in my pelvic area along with unbearable back pain that left me unable to sit, stand, walk, barely lay down. I went to about 4 different doctors who suggested things from ectopic pregnancy, to hernias, to simply cysts rupturing. I knew from my intravaginal ultrasounds that I had some large cysts, but from what I’ve heard from people with PCOS, once the cyst ruptured their pain would go away. For me, the pain lasted and lasted. Initially my doctor had just put me on a prescription strength ibuprofen but it did absolutely nothing for me. As someone who works as a nurse, I can tell you that when a patient says they are in pain, the physicians and nurses have to believe you. Only the person experiencing the pain knows what they are feeling so it is not the doctors place to jude. If you need something stronger do not be afraid to get on your doctors back and say you NEED something because the pain is affecting your life.
For me, I have a very full bottle of narcotic pain killers, but I’ve been avoiding taking them and relying on all natural things to help with pain. Epsom salt warm baths are wonderful! Aromatherapy is great too! You can get some ideas on pinterest for those. Also, learning to meditate and closing your eyes and deep breathing. Exercise, although it feels impossible, is also helpful along with a nutritious and healthy diet, watch the sodium and sugars, and drink tons of water. I too had the laparoscopy and I understand how frustrating it is to still experience that horrible pain that no one else understands even after the surgery has been done. Don’t be afraid to see a different OB/GYN until you find one that you connect with and who you feel is most understanding to your situation.
Another great tip, try a chiropractor! I started to go to one after I was no longer able to move due to pain, they did some ultrasound and electroshock/ice treatments that made a HUGE difference for my lower back pain. It took about 4-5 visits within two weeks to really notice the difference but boy did it ever!
I know this sounds bad since I am a nurse, but I do not like taking drugs of any kind so I choose not to take bc and I’ve also been able to get back to an almost completely normal life by using some natural ways to relieve pain and stress. I don’t take my pain killers any more, but I have them available should the pain get out of control again. It’s probably not the best idea to stop bc so I wouldn’t recommend it to anyone, it was a personal choice for me because I felt as though it made things worse for me. My body has no regulated itself again. Periods are still horrible, but I’ve learned to manage. I hope you are able to find some solutions to your pain and are better able to manage your symptoms soon! It sucks, but it’s possible!
So your on bcp without stopping and you’re not getting your period at all and you’re in all that pain?? Do you feel it could be muscular or do u get muscle spasms? I have endo and I have terrible pain with sitting. I have really bad vaginal pain and pain anywhere my backside touches the chair and my legs I was on Depo-Provera for years and still continue to have pain. I just had Triggerpoint injections done by a pain doctor yesterday, 3 down the back of each leg. My pcp didn’t want to give me painkillers so I went to a pain doctor an anesthesiologist at a orthopedic. I go to physical & massage therapy to calm the muscle spasms. it feels like I have deep pain all around my pelvic bone, the pelvic crest in the back, down my butt and down my legs, and my groin area. My guess is that it’s endometrial tissue that’s causing adhesions elsewhere in my pelvis and my muscles are going haywire but no dr has confirmed…. I can have sex but there’s certain spots inside that I have to keep away from. I live in FL
I have had endo since I was 18, so far I have had two miscarriages. Doctors have said that its nothing to do with my condition. But deep onside I feel different about their views. Over the last few months I keep having more and more signs that my endo is worsening. My consultant wants me to go on the coil but I dont want to. He says its the only way. Im now 20 and I was just wondering if I should ask my doctor for the lascop again as the last 4 days the tiredness has gotten me down due to not being able to do things. The pains are there constant to me the last few months. It makes me feel sick tired angry. It feels like it just want to take over me. I try my best to not let it happen but sometimes I feel like letting it. Just some advice please on if I should ask doc for another lascop.
Sian,
Yes I think u should do something. If u have endo and ur not taking anything to control it, it could be creating a lot of problems internally. I had a lap. in 2010 & they didn’t find endo but I was in tons of pain. My dr told me I may still have it & they just didn’t find it in that area. After more years of pain & period issues I decided to have a PLH hysterectomy because I have one child and dont want anymore. They found lots of endo in December 2014 & had to remove a bunch of it. Listen to yourself & push for what u feel u need!! At least you will have the peace of mind & maybe some answers and u can go from there….
I have suffered for over 4 years with an intense pain left side of my lower stomach and towards the groin! The pain starts 2 days before my period and lasts for the whole of my period. To me it feels like someone has a stuck a screwdriver in my stomach and is twisting in continually. The pain can completely drain me of all energy at its worst and sometimes I can hardly stand up straight! My Dr in the UK did tests and didn’t really conclude anything but said it was possible I had Endometriosis. I moved to Canada and continued to suffer, visiting the Dr. every month and the ER twice, I have had CT scans and various other tests and still nothing! My Dr. told me it was irritable bowel syndrome even after showing him the notes from my previous Dr. in the UK. I went to the Dr. earlier this month again about it and was prescribed anti inflammatory pills and told my best hope is to wish for menopause!!!!!! I am 45, I could have another 10 years of this!
Alison,
They told me I had IBS too. When I had my hysterectomy they found a bunch of endo on my intestines, rectum & ovary.
Paula
This has been the most refreshing article i have read since struggling with this disease for what feels like a lifetime. It has taught me to listen to myself+feel proud that i have managed my pain emotionally+physically on my own. This article has given me insight
Great to hear 🙂 Every year we manage with this disease is a huge accomplishment.
Today I got my laparoscopy! They told my mom they found a little and from what my mom says she said “it could come back. And that I might have some under my ovary that she couldn’t get to.” I’m very upset with my doctor because she never checked on me or told me this after the surgery. She told my mom.. Who could barely recall what she said. It would of been smart for them to write everything down that they found and where. They never told me after my lap that I would have problems peeing so I’m concerned as to whether or not this is normal. I have the strong urge to and I’ll go Alittle and it will stop and then so on. Is that normal? Also.. Is it normal that my doctor didn’t even meet with me or let me ask any questions after the surgery.. I apparently have to wait 10 days at my post op to ask questions and see pictures and be told about what she found.
Paige, I had the exact same experience as you except they found endo everywhere. I didn’t seee my gyno after my procedure and had a very hard time going home the same day. It’s unfortunate, but maybe our gynos see this so often, they think it’s no big deal or maybe they had a procedure to perform after. If someone were to ask me details about my laparoscopy, I wouldn’t be able to give much info and neither would my mom and husband who were both with me.. 1 year and two months later and the pain is returning, which I knew could happen. I did some reading prior and saw that bladder issues could come after the surgery, but I felt hopeful it wouldn’t apply to me. Well, I don’t have the same bladder control as I did before the surgery. It has gotten better over time, though and for you it will, too! Stay positive
I have had pains in my abdomen that come once a month or every few months for the past few years. I always new my period was coming at least a week in advance (I’m extremely irregular) because of the excruciating pain that would suddenly come on. I have been to the doctor and emergency rooms numerous times in the past 7 years complaining about my abdomen and back. I was sent home after being told I either was constipated, had a uti, a yeast infection, kidney stones, kidney infection, ovarian cysts, you name it. None of that stuff ever checked out but I didn’t give up. I went and saw a gyno and the reassured me I wasn’t crazy and explained what endometriosis was. I am so relieved knowing now what I have.
Hey all. I’m not sure if I have or not. But maybe one of you can help. I know you guys aren’t doctors. But you know more. Where do I start. I’m always tired. Have 2 boys. My periods is always painful for the first 2 days. I get headaches for nothing. But while bothers me. When I sat for a while and stand up 2 quickly it feels like something always rips in my right side in my lower abdominal. My breast is always extremely tender a week and a half before my period. And sometimes just sometimes it is very painful if my husband and I are intimate. Yesterday my right leg and hip started being painful when I walk. Can it possibly be Endometriosis you think? Did some of you have the same symptoms? And can I only get in one side? Oh and I’m almost always bloated!
Hi, I too have the pain on only one side. I. Have been getting the pain on and off for years. The pain would go for a couple of months then come back again but for the past 8 weeks it has become more painful and very often too. My doctor said it sounded like bis with the bowel contracting. I heard that the blood test ca125 can pick up anything wrong with the ovaries. She was reluctant to do this test as she felt it was ibs. She eventually gave in and let me have the test. I got a call from the doctor the next day saying the ca125 level should be between 0 and 35. My level was 42. She then sent me to a consultant who felt my tummy, did an internal examination and an internal ovary examination. My tummy did not feel particularly painful when he checked me (typical) and said he could not see anything alarming but that I did have fluid in my right ovary from normal cysts that women produce during ovulation and this would raise my ca125 level. He thinks I have endo but could not actually see it on screen so is sending me for a laparoscopy in a few months. My pain is only on the right, sometimes it’s an inch to the right of my belly button and often it is right down low to the right of my groin and above the top of my leg. It’s a stretchy feeling and if I lay on my left in bed I feel the pain pulling towards the left. It’s horrible. It feels like something else is going on and it’s hard not to worry. So I’m interested too to see if anyone else gets it just on their right side.
That is exactly where all this originated for me. On my right side… The first gyno I saw just told me it was a cyst from my period and when I came in again to have an IUD placed, I could tell her if it was still there. It was there for almost 6 months before I switched doctors… he had me do a laproscopy and discovered endometriosis at stage 1. The pain on my right side still comes and goes, and b/c just seemed to make it more consistent. It is that weird stretchy, annoyingly painful feeling… Left side is fine… I was getting cysts for a few months afterwards, but that could have been because of Skyla. However, I believe, throughout my menstruating life, I have had the majority of my pain on the right. The breast tenderness, the pain, exhaustion…. it all comes right before my period. Whether that is normal or not, I do not know. Doctors have told me it is, friends I have have never experienced this… so it’s confusing. I figure with the endo diagnosis there isn’t a thing I can do about it, so just keep on keepin’ on as they say.
Hi ya’ll. Im 39 and have been having severe stabbing pain in my right side for almost two years now. I have been to the ER once and they forgot about me for 3 hours until my mom jumped all over them and finally did a CT scan and sent me home with a prescription for naproxen 500 and said I just have severe abdominal pain. I have went to many doctors and they cant find anything wrong with me. One doctor sent me to have another CT scan and said I might have Crohn’s disease. I was sent for a colonoscopy. Crohn’s was ruled out but I might have IBS and was given meds for that but it doesnt work either. My doctor said she was gonna have me go to a urogynocologist next and that was in October 2017 and so far nothing has been done. My pain is so bad that I cant even function in daily life and the pain is so svere the I start sweating and get nausiated and feel like Im going to pass out. I take ibuprofen almost everyday and lay on a heating pad most of the time. I feel like im dying inside and sometimes I wish I was so I dont have to feel this pain anymore. I cant hardly be a wife or mother anymore because I just cant take the pain and dont have the energy. It makes me feel useless and I have a husband and 4 kids I have to look after. I have no faith in doctors anymore and Im lost and dont know where to turn. I have always been a normal weight for my size and I have gained 30 to 40 lbs cause it fluxuates. I have had 2 c-sections and had my tubes tied with the last one. I bled for 5 straight years after that then I had an edometrial ablation and no periods since. When I did have somewhat normal periods they would last from 8 to 12 days with severe pain then. Any advice?
Hi Shonda, I would actually a search up and dos specialists in your area and go to a gynecologist that specializes in it. And you can request a laparoscopy they can do a couple little small incisions in your stomach to look for it see what’s up. I had pain for 10 years before the doctor finally decided to do the laparoscopy and turned out I had endometriosis, it was stage four. I’m actually scheduled for a full hysterectomy on the 23rd of February to help with some of that pain. They can’t show endo on any scan or test the only way to diagnosis it is through laparoscopy. Good luck let me know if you need any help
Hiya.
I went back to the doctors last week after having had a smear, swab and transvaginal ultrasound last year. They all came back normal. However, I’m still in agony every month(last month I only had about four days without pain). She’s now sent off a referral and gave me Solpadol, I can’t work on tthese tablets though. I’ve been having shooting pains from the top of my bum/back travelling to the side of my left knee for weeks now when I kneel/cross my legsor stand for a while. Is this anything to do with endo or am I just suffering with my joints?
Thanks,
Beth
hi Beth
sorry to hear you are suffering so much at the moment,the pain you are describing from your lower back/bum & shooting down your leg sounds like what I get,I get every month about a week before my period Ive had endo for over 20 years now & have found it flares up & settles down a bit again,but every month about a week before my period I get the same horrible shooting pains you describe to the point where sometimes my left leg will give way under me with no warning & its caused by sciatica, the sciatic nerve sits at the base of your spine & sometimes when you have endo the womb can swell before a period & pushes back thus sqaushing that sciatic nerve which causes the pain,the only thing Ive found that helps is laying down & taking as many anti inflamatorys as I can,I know for sciatica that isnt endo related can be helped with gentle stretching exercises, but I dont know if it would work for this or not maybe a physio could advise you? take care x
Hi Shelley,
Thanks for your comment, I’m sorry that you’re suffering too…. I had thought that it might be connected but with this you sometimes think that you’ve just turned into someone who is worrying and complaining about everything. I will have a look on the net for some stretching exercises and hopefully this will help. You take care too x
Beth,
I have the same thing & have endo but doctors don’t seem to be able to tell me… Let me know if u find help w it & answers…
Paula
Hi Paula,
I didn’t mention it to the doctor cos I was just determined to get referred and you know what GPs are like with period problems…… I’ll ask up the hospital but I don’t know how long the waiting list is. You take care x
i have been having kidney stones ,utis,a kidney infection,@ no period for 10 months. then it came this morning @ my lower back @ my lower tummy is absolutely killing me.i havent had a physical since 2003 cus i dnt have insurance but i know that something is very wrong
I’m 22, almost 23, have never had children. About three months ago I starting having rectal pressure and pressure in my lower abdomen with a sense of fullness. It has been constant since then, it feels like I’m constantly sitting on a grapefruit or something. About a month in I started to have a strange burning pain in my lower, lower left hand side, and now I still have the same pain but it’s spread across my lower abdomen. It isn’t terribly painful, just a very strange feeling– like I have been burned by a curling iron or something from the inside. I had two rectal, and two pelvic exams, both said they could feel nothing. My doctor thought I might have ovarian cysts but my ultrasound came back normal, so he ordered a CT scan to see what was up. My CT scan came back completely normal except a cyst inside of my l4 vertebrae. He thinks my symptoms are being caused by endometriosis, since my mom and aunt have it, but I’m not in terrible pain, but the pressure is unbearably uncomfortable at times. It’s really taking a strain on my life. Has anyone ever had symptoms like this and it ended up being endo?
L…I am having the same symptoms. They have been occurring for almost two months now. Ultrasound shows normal cyst. Paps next week. Have been told its gas, constipation, h pylori, indigestion. No one seems to be concerned. Please let me know what your doctor says
I have had most of those symptoms. I have endometriosis, adenomyosis and pelvic floor dysfunction which is a lot of pressure in the vagina and rectum. I also have a tilted pelvis so most of my pain is in my lower back so I think because your family members have it that you most likely have it. You should definitely ask a doctor to look into it
I was just diagnosed with a chocolate cyst last week after having intermittent pain for 2 years. I have found that regular doctors are not the ones to see. My old General Practitioner was very compassionate about my pain but stated, “Abdominal pain is tough to diagnose. Everything is attached down there so the best we can do is begin the process of ruling things out.” They started with an ultrasound of my gall bladder to look for stones. It came out clean. Next they wanted to do a CT Scan of my intestines, but I didn’t think it was an intestinal issue so I refused. He finally said, “I think your next step should be to see an OB/GYN.” I tried to see my OB but was told that I’d have to wait 4-6 months to see the doctor or 1 month to see the nurse practitioner. I went to my midwife instead, since she would see me that week, and she told me to see a Reproductive Endocrinologist. I put off that appointment for months (don’t ask me why!) but I finally went last week. They did an ultrasound right there in the office. As we were walking into the ultrasound room, the doctor said, “Your pain sounds like adenomyosis, but let’s take a look.” As soon as he looked, he said, “Well there’s part of your problem. Endometriosis. Specifically an endometrioma, or chocolate cyst, on your right ovary.” Now I’m supposed to go back during my next period for another ultrasound to see if the chocolate cyst changes in size. After that, they’re going to have me come back so they can look around inside my uterus with a little camera to see if anything else is going on.
The funny thing is that earlier in the week I went to my new General Practitioner to look at my shin (I had a bad fall around Christmas and it still hurts) and I decided to ask his professional opinion of my belly pain. Kind of the litmus test on whether I’d continue to see him. In his omniscience he said, “You should just cancel that Endocrinologist appointment. I’ll tell you what they are going to find. Absolutely nothing. You’ve got Irritable Bowel Syndrome. Look it up online and then you can come back and say, ‘Wow, Dr. Vasta! You got it right!’ You like oatmeal? Eat oatmeal and it’ll clear that right up. But don’t waste your time and money at that Endocrinologist. They’ll run you through all sorts of tests and they’ll find nothing.” I’m tempted to get a copy of my report from the endocrinologist and pass it on to Dr. Vasta.
I am so happy I found this site! Its a bit of a relief that I’m not the only one feeling crazy with this pain.
I started having endo symptoms 4 years ago. About 3 months ago the pain was horrible during sex and my lower abdomen became untouchable due to pain. My doctor started me on birth control (even after having my tubes tied), metformin, and a water pill. I have found no relief. The pain around periods are intolerable, and I’ve always been very strong when its pain related.
My symptoms include: Tired all of the time (difficulty sleeping due to pain also), Nausea, Sharp pain on cervix / vagina (like a knife inside me), Lower back pain, Abdominal pain, Extreme pain by right ovary, Irregular periods (now 38-40 days apart with 1-3 days bleeding…normal – light flow but Ive been passing large blood clots), increased discharge, Painful intercourse (main reason I went to doc 4 years ago), weight gain, Bigger boobs / purple nipples, Hot flashes, Chills, Labor type pains, Joint pains, Tenderness on lower abdomen, Headaches, Random burning after urinating. I feel like I’m going crazy 🙁
Last week I finally could not take the pain and called my doctor twice stating I felt like I was in labor. I have three young children and I feel like I’m having back labor without the award. I cry most nights (when pain is the worst), and I have a very hard time standing straight. The doctor tells me to take ibuprofen or tylenol but I get no relief. They actually made me feel horrible when I asked for something stronger (mind you, I only go to the doc once a yr if even, and I’m not a pill taker). I use heat patches placed right at the top of my butt, and usually crawl into a ball to hold my belly.
All of this is really effecting my daily life. All I want to do is sleep…all of the time. Which in turn makes me cranky. I can’t even put away laundry or do dishes without ending in tears. There’s just so much pressure on my lower back and a ripping sensation around my right ovary. Its hard for me to pick up my 1 yr old daughter without wanting to scream out in pain.
I went to a gyno today, and after I burst into tears during the pelvic exam, he immediately told me he wants a laproscopy performed. Meanwhile I’m waiting to be called to have it scheduled and I ‘m still in agonizing pain. I really wish I wouldn’t had been so stubborn about going to the doctor in the first place…I repetitively told myself to suck it up :-/ Part of me wants to “ride it out” (ya right lol) and the other part is screaming to do the surgery now. My main factor is that I do not have insurance (I never go to the doc so its never been beneficial to me). I’ve already put out so much money doing ultrasounds, blood work, recent doc visits, medication, etc…I’m afraid that they are going to do the surgery and tell me they found nothing. I know something is horribly wrong, so I’m not sure why I think that. Just from my pain, I feel like my abdomen is full of endo…especially on my right side and around the lower area of my back.
I’m hoping the surgery is soon, I can’t keep taking this pain 🙁
Amberdavis324 I am so sorry about your pain. You articulated most all of the symptoms I have. I am a 41 year old mom of four children. I feel so depleted of energy due to this constant pain. My gyno wants to do a hysterectomy. I am troubled a bit on making this decision. I have had my tubes tied and endometrial ablation and am on continuous bcp. Nothing seems to work. The pain has gone from a week out of the month to longer and longer over time. I am prescribed very few pain pills which I ration (& all this does is take the edge off, if that). I don’t think I can take this much longer. Prayers for all of us with this unfortunate, debilitating condition. It affects my life daily, my Company which I own and is affecting my family relationships.
Endo sucks! I have such a dissonance when it comes to thinking about it, too. I know that the pain is there, but it seems like people that have treated me and the people surrounding me don’t understand/care. My doctor (who was better by miles than my previous one) didn’t seem to care all that much. It was like he was telling me that I had some sort of cold. My laproscopy did not show large amounts of scar tissue, but the pain I experience is intense at times. As I type this right at this very moment, it’s like someone is punching me on my right side over and over and over. It like hitting a bruise that you already have. The pain comes and goes. It’s not always there, which lends more weight to feeling the dissonance I feel in regard to it. Things like “You’re just being a wuss” or “Well, it’s never permanent, so stop complaining.” go through my head. It is always the right side. And sex… my goodness sex can hurt. I have told my doctor this too, but there isn’t much he said with regard to it. Frustrating for both my boyfriend and I, so I usually just try and grit through the pain because it’s not fair to the bf. Usually, the pain is worse right before menstruation, but sometimes it pops up intermittently. If I end up with a cyst, I am in constant pain. It is almost always felt on the right side, and it is like pain just emanates from that one area. I will feel it in my thighs and sometimes down to my knee. I refuse to let the pain keep me from doing things, but it is a constant presence. I never know if I will wake up and have to deal with it for that day or if I will be alright. Sometimes medicine works and sometimes it doesn’t. I do know that I don’t want to take tons of painkillers because I do not want to hurt my body. So… that leaves me with handling the mental side of the pain. Just keep breathing and get through it. One of the worst things is the fatigue. It is so much harder to push through that than the pain, for me. I have so much that constantly needs to get done, but when I’m coming home from work or school so exhausted, my focus is gone. I understand tired, but this is exhausted. Overwhelmingly so. I know a girl up toward the top asked if anyone had ever been treated with anti-depressants: my answer is yes. I was treated for PMDD about 6 years ago. They used Prozac. In conclusion, I feel everyone’s pain! lol… In all seriousness though, I am glad that I am not alone, although I wish that there was more understanding from those that don’t suffer from it rather than attributing it to “being a woman so there will be pain” type of stuff. PS. I have actually found male gynos to be more proactive than female.
This site helped me more than you could know. Now I feel like I’m not crazy! I had cramps so bad last month I honestly wondered if I could have been pregnant and was in labor. My gyno just played it off like it was nothing, and told me to take some aspirin. I have always been tired all the time, and everyone was telling me that I just ate a bad diet. Ugh!!! Luckily I have an appointment at the end of the month to talk to someone different!
I’ve had a constant burning pelvic ache mostly on my right side for a year now. It hurts every single day but gets worse for several days at a time. I’ve had multiple sonograms and a ct scan done and both showed nothing except for a few small cysts on my right ovary. My doctor said this shouldn’t be causing me pain. After several appointments to try to get answers, my doctor said that it could be endometriosis and due to the pain I have pelvic floor tension. She prescribed continuous birth control and physical therapy. The birth control has helped because I don’t have periods which caused intense pain but I still have the daily burning ache in my pelvic area. It is worse when I sit for long periods. It also sometimes causes a pressure feeling and a throbbing ache on my right side. Does anyone else have an intense burning ache in their lower stomach/pelvis/vague that never goes away? Does this sound like endo?
I have that exact feeling! Burning pain almost all the time that honestly never goes away. I went to my gyno saying i couldn’t take it anymore and needed a laparoscopy. She instantly agreed. They found stage 1 endo and my gyno said it was barely enough to be the cause of my pain and told me to take birth control to stop my periods. I thought I was going to feel better after my surgery since she said she burned it off but I feel EXACTLY the same, which is really frustrating. This pain has been going for years. my previous doctor tried to tell me “you’re fine, its normal. you need to relax. take this antidepressant, it is a muscle relaxer.” That was before I switched doctors and went to see the one I currently see. I am now thinking I have interstitial cystitis although I’m not sure how. That or some pelvic floor problem as you mentioned. I feel that I am too young to go through all this and I’m debating if the pelvic floor therapy will even help. Have you tried it yet? At this point my last option is going to see a urogynecologist which I plan on doing soon. What are some of your other symptoms?
Hi Paige, glad to hear someone else has similar symptoms! Your dr should know that endo is different for every person and even a small amount can cause severe pain to some people. Physical therapy didn’t help me but it was worth a try. I actually bought a book that described ways I could do exercises to relax my tense muscles at home. You could try it and see if it helps. I saw my dr yesterday who said she wants to do a lap finally because she feels I do have endo. I have daily pain. It varies in intensity. Even on continuous birth control I have spotting which increases my pain. I have the constant burning ache and I get lower abdominal cramping, low back pain, stabbing pain in my right ovary area, shooting pains down my back and hip, increases discharge, intense aching and burning after sex. My dr said if they find endo she will put me on lupron after. Maybe you should ask your dr about that. It stops the production of estrogen which feeds the endo. I hope you figure it out!
Hey Paige, any updates on how you’re feeling? The exact same thing happened to me with my surgery. Stage one endo that my dr said shouldn’t be causing my pain. I still have the constant burning ache and am now thinking that I also may have IC. Did you see the urologist yet? Hope you’re feeling better and have found some answers!
Nope no relief yet. After getting no relief with the first surgery I seeked a second opinion from a fertility specialist who had been dealing with endo for quite some time. She has helped my little sisters friend and my friend is pain free. She got surgery to laser it all out, and used something to make sure the organs and tissues would stay seperate and not bound together. She then uses Lupron with something called feedback to give me back some hormones. I will keep you all updated. I’m hoping after this I will be pain free and will have no more bowel or bladder issues and no more burning/aching pain.
Caitlyn,
I forgot to ask about the physical therapy that you said didn’t work for you..I was told by my general doctor to get it done but being only 18 I was embarrassed that I would be the youngest one there. I was also concerned it was going to be very invasive and awkward and uncomfortable. Is it stretches? breathing exercises? or was it biofeedback? I’ve read up on it and am even thinking after buying two books on pelvic pain I can do the relaxing on my own. However, if it doesn’t work I might call the specialist I’ve been recommended to see what she thinks.
Hi,at the moment I’m experiencing all of the symptoms…I thought I had ovulation pain,because at times I normally experience sharp pains between my legs and my lower abdomen on either two sides,its so painful that I’m now struggling to cope with my daily activities like cleaning and I’m always tired,I never used to be like that,with headaches I can’t even say more,they hv gotten worse with each day passing by more especially as I’m approaching my period,while its really difficult for me to bend down on my period with painful period pains,my life has always been like ever since I started menstruation at the age of 11 and has gotten worse now at 25 and this year the pain are just horrible weather I’m on my period or not,there is no day without experiencing excruciating pain on my abdomen…I have going to doctors ,and the only thing I have been given are painkillers just to ease the pain,but I hope now I have seen the light after reading this article and will consider going to a gynaecologist
Mention endo to your gyno. Trust me, you would think they would be concerned when you go there often complaining of pain but for every test I’ve had, I had to personally say, I believe I have this…and this is why.. It took some convincing too. My first male doctor watched as I cried and said “trust me you are fine” without running ZERO tests.. It wasn’t long before I said nope, i’m not, and asked to see a female doctor whom i said, listen i think i have endo or something..i need help. and she right away said lets do a laparoscopy. i had been wanting to hear those words for years because no doctor wanted to give me one. and it wasn’t even that big of a deal to do and recovery is quick and easy..no ones symptoms are the same, so keep talking to doctors who will take you seriously.
Matshediso
Ur post didn’t pop up in my email….
U need to go to a gyno & don’t take no for an answer if u really want the laparoscopy done. I had one done & they found no signs of endo in 2010. I was still have so much pain even when on the depo provera shot &no periods for years. They did another lap last December right after my period & found a bunch of endo fresh & old. I have since had a hysterectomy & still have pain but not as severe. Good luck to u!!! Sorry ur in so much pain. I know it’s really terrible:(
I was diagnosed with Endo at age 26 after years and years of horrendous periods and crippling pain. I was if I can say lucky enough to be having a hernia operation and that is when the Endo lesions were found. I became pregnant shortly after once I knew what Endo was along with the knowledge of its complications and for a few years things were ok but by age 30 the pain was back and periods worse than ever. I finally had a lap done at age 32 after cysts were found on my ovaries and that surgery ended with removal of my left ovary along with any lesions and cysts they could find. Shortly after this surgery knowing I was not having more children I had Endometrial ablation to remove the lining of my uterus so that my periods would not be so heavy. This also helped for a while but the painful bower discomfort and pressure has gotten worse and now my lower back is in agony on a daily basis and even worse when I get my period making me wonder if the Endo has somehow effected my sciatic nerve. I am going to see the doctor in a few weeks and I am hoping this will be addressed knowing my Endo history and I will not be sent for a million other tests for lower back pain. Anyone on here ever
been officially diagnosed with Sciatic Endometriosis? Or know of any really great Endo specialists in the NY area?
Thank you all
I to am having horrible sciatic pain. I hate the notion of putting on socks or shoes, or even pants because it hurts so bad. Before my period, I feel like I’m having back labor for a week straight 🙁
I have a lot of problems w leg pain. I’ve never heard of endo-sciatic but I’m sure lesions in the pelvis can cause all kinds of issues like that. I’ve had it for a long time & I don’t think dr’s know or understand much about endo…
I am currently going to an endo specialist in NYC dr Seckin. I have my surgery scheduled for July 24. Women fly in from all over the country to have surgery with him. I pray this works for me. I’m 43 and praying for menopause.
Let me know how he is!! I was considering seeing a specialist but because they ask for cash upfront but I refuse. I was thinking of seeing him in particular since New York is only two or three hours away from where I live. Good luck to you. I’m currently waiting for my Lupron to be delivered and from there I’m getting my second surgery.
Paige,
Did u get ur first shot. Mine is on order. How is it going if so?
Paula
I did not start the shots yet. They were supposed to be in and for some reason never shipped 🙁 keep me updated if you start before me. I’ll be anxious to know how anyone else is doing on Lupron.
Paige,
I ended up only have to pay $10 for one month with my insurance it would’ve been $80 but I got a copay card from the manufacturer. I ended up only having to pay $10. Were u offered that? If the one month goes well then I’m going to do the 3 month shot. They are shipping it today & then when my doc gets it their going to call me to schedule. I’m a bit scared. It’s like choosing between constant pain & in the hopes that u will get some relief adding more & hoping to God things turn out for the best. Not looking forward to the menopause symptoms & the first 2 weeks ur body is flooded w estrogen so ur symptoms may worsen:(
Good luck to u at least perhaps we can go through it together & have someone to lean on.
Paula
Hello ladies…I feel your pain…literally!!! I am being scheduled for an exploratory lap as we speak. I am typically a very intelligent woman with a thirst for knowledge but I have to admit, this is the first I have actually “googled” “what does endometriosis pain feel like” ughh. I thought I was clear of this as I had a hysterectomy in 2005 due to a tumor that consumed all but 3cm of my uterus….they left the (barely) functioning ovaries to avoid having to take hormone replacement because of my risk of breast cancer…thanx mom..lol. I am hoping it is simply scar tissue but after reading these comments am leaning more toward endo. The symptoms fit. I have been dealing with this pain for 4 years and my Gyno is completely sympathetic it has been me that puts it off. I am surprised by the incidents of leg, hip, back pain…I have been around the block with doctors and my back, hip, leg pain combined with fatigue, all over body aches and the migraines. I have been told by a Rheumatologist that it is Fibromyalgia…a pain doctor said it is nerve pain due to a narrowing in the column and wants to do a spinal cord stimulator….a neurosurgeon said I need a “cage” (complete with screws) put in my back because it is my discs….now anyone of these May be true, but I am now thinking I may have been unnecessarily dealing with all this when I should have just said YES 3 years ago when my Gyno suggested she go in and take a look. Anyway, I am sending LOVE AND LIGHT to all of us who, while being female is a beautiful blessing, are suffering the side affects of nature. STAY STRONG!!
I have been told the same things. I don’t get migraines but I get all the rest. Regular practitioners say it’s fribromyalgia. My orthopedic says that’s bs & it’s my back from bulging discs. I have bad muscle cramps in my pelvic floor, back & legs & I have endo & lots of other people have similar symptoms as mine that have endo. I am so sick to death of this…very frustrating & there’s really no treatment for any of it! Make sure u r sure before any major surgery.
I wonder why my doctor didn’t tell me estrogen feeds the endo.. That’s alarming. What is the name of the book? At this point I’m willing to try anything. I believe I will be calling a reproductive specialist that was recommended by a friend who has endo and was cured of her pain. Although all it took was her surgery and she felt better.. I didn’t after my surgery. I hope there is something else that this person can do for me.
The book is Ending Female Pain by Isa Herrera. Have you ever had a CT done of your pelvic area? In mine they saw dialated veins that they thought could be causing pelvic congestion. It can cause the burning aching pain and a heavy feeling. They can do a vein embolizatipn to fix the dialation. If they found endo in you during your first surgery, I would think that is what is causing your pain though. I understand your frustration in not being able to pinpoint the cause with any certainty.
No I have had an ultrasound. I read about that before but I always try to tackle the things that I think are more serious or more problematic first. I’m not sure who I would mention this vein congestion problem to. Good to know though. I really think its pfd. I will look into this book as well as possibly at ct scan. Did they find pelvic congestion with you? If so how did they treat it?
Caitlin & Paige,
U both describe exactly what I’ve gone through and I continue to b in pain. It’s a bit better now but I had a hysterectomy bc I’m 36 and figured it may help. They didn’t find that I had endo until they went in so they didn’t take my ovaries & now I’m on birth control pills for the endo. My doc doesn’t recommend Lupron. Do your homework before taking it. It’s got a bad rep. I’m not saying don’t take it, just be well informed bc u don’t want to have any more problems due to meds. I have severe pelvic floor pain & have been going to pt for it since 2008. It’s like i have a golf ball that festers in the left side of my groin. I hardly ever get tight bands on my right though. I don’t know if the endo caused adhesions & that’s why but I have trigger points all throughout my pelvis & abdomen and my muscles stay in spasm & won’t relax. I get a lot of massages. I’ve been told I have fibromyalgia but seems kinda skeptical when the pain is more abd/pelvic…. I have been dealing w this since 2001 & have done just about everything possible. I work full time and have a 10 year old. I am active & refuse to let it take over my life. Sitting can just be hell!! I go to a pain dr & take Vicodin & muscle relaxers & oatmeal baths as needed. I’ve done injections, psycoyherapy, holistic, etc. Took 12 years for me to get the endo diagnosis, 7 for the pelvic floor dysfunction. I’ve been to way too many doctors & it just plain sucks. When having burning vag pain I use Refresh ph balance inserts. Those things won’t irritate even the most sensitive person. My pt recommended them bc my muscles would get so tight I’d feel irritated like I had an infection only it was just inflammation. Everyone has their own method to deal w this & that’s some of mine… Good luck to u
Paula
Paige,
I don’t have IC but my sister does. There is a new medication called elmiron that is out now. I’ve been tested for IC & had a couple cystoscopies but my gyno & urogyno never found it however the medication does help me sometimes. I have some endo that they couldn’t burn off cuz it was on my ureters. My dr was nice enough to give it to me to at least see if it would help. It doesn’t build up in your system so your supposed to take it 3 x daily. I just do it as needed….
Paula
I been running back n forward to hospital n doctor no answer. Have done all kind test scheduled for more.some days pain have me well can’t move.I have all this sign .they tell me stop using Dr.Google now its taken mentally toll on me because now one has Given me diagnosis. So now am seeing psychologist. Think am imaging pain.reading your post have help me some .thanks
⛪
Tosha,
How rude that people tell u it’s in your head. If only they could be in our bodies!! It’s just despicable. U are not crazy. I had dr’s do the same thing to me. I went to a really good psychologist bc I moved & went through a divorce & just needed some support but I also went to deal with the pain. Living with chronic pain & not having anyone that understands can be really really tough. Not having a diagnosis or any tangeable evidence that your not crazy just makes it all that much worse. I’m sorry u have to go through this. U know in your heart when something is wrong sometimes the answers evade us. I hope u find them quickly
Paula
This is not fair,I had my message posted but no one replied to any of message,and just like anybody else who posted the views on this website,I also need some advice
I was taken into hospital for an emergency appendix removal 8 weeks ago. When they were operating they found a thickening of my bowell and not knowing whether it was cancerous or not decided to remove that portion of my bowell. That operation is taking its toll as far as recovery is concerned on its own. However, forgetting that, upon testing the removed tissue it was decided that the thickening was endometriosis which had penetrated through to my bowell. Further tests show that I as loo have adenemyosis (endo of the internal muscle of the uterus). A decade ago I was diagnosed with ibs. The pain has been debilitating since my mid twenties. Now it seems the diagnosis was incorrect and I have actually been suffering with endo and adenomyosis. My next step is treatment. I am undecided whether to go surgical or hormonal. I am bipolar and hormones can send me a bit crazy! But I don’t want an op either. Ido however want the pain to go. I have a ‘period’ from my back ppassage (sorry) due to the amount of endo tissue on my bowell. It’s very strange and the pain I experience is worse than mid childbirth. What are your experiences of treatment? Especially if anybody suffers from bowell endo. Thanks
Becky,
So here’s the deal. I have NEVER done well with BC pills. I have tried them on and off since I was 16 because of my periods, but they always made me crazy. After my last surgery, they put me on a low dose BC hoping it wouldn’t have the repercussions…and bad news… the endo came back, and I was still crazy on BC.
Hormones are thought to help endometriosis, but there is actually no proof that endo is caused by hormones. So, it’s a shot in the dark. Now, I have known people that have done something called compounding and they showed improvement. It’s more of a hollistic approach than BC. What happens is that they actually take your current hormone levels and even you out. But, once again, they don’t know what causes endo, so no one knows what to do to stop it.
I have had 3 surgeries and am about to be on my fourth, and unfortunately surgery is sometimes necessary. My last surgery the endo had completely consumed my bowels. It had gone internal as well as plastered them to the right side of my body. In addition my left ovary was enveloped inside my ligament (in 20 years of practice the doc had never seen it happen before, apparently they thought they lost my ovary). Endo keeps coming back. I keep hoping this will be my last surgery, but I don’t know.
Basically, sometimes you need surgery, but it’s not going to fix it. It may drastically improve your pain though. Nothing fixes endo except hysterectomy. I am 27 and a newly wed. I refuse to have a hysterectomy right now, but your situation may be different, and a hollistic approach may work for you. It honestly depends on you and your wants. Do what works for you… and hopefully, it will keep working.
I am 35 years old have had no children. I was diagnosed with polycystic ovaries and endometriosis. 5 years ago I had a laparoscopic surgery to remove the adhesions but now I will have extreme pain in my buttock area hip , pelvis and leg. Getting another laparoscopic surgery soon. I think I have endometriosis sciatica. I also get swelling in my hip. Has anyone else experienced this?
Yes I have all that pretty much all the time.
Paula
I also get swelling in my left hip and extreme lower back. Is this normal with endometriosis?
I have pain in right hip and down my buttocks and leg also
So I have been dealing with endo for a few years now, and about to have my 3rd surgery. I would just like to tell anyone whom is having these issues to please please see an endometriosis specialist. They are hard to find and you may have to travel; but, it’ll be worth it in the end. I had a doctor whom I trusted who actually spread the endo during the first surgery. See a specialist in the end it’ll be worth the trouble.
Hi
I am 23 and I got told I had endometriosis just October last year!
Since then I’ve had 2 operations to try and remove it! Both being failures!
Since I was 14 I have always suffered with period pains and heavy bleeding always being told I’ll be ok and to take pain killers!
This is destroying my life in all aspects! Relationship, friendship and my work life.
I am constantly down and feeling hormonal even when I am not on a period.
I’ve had to make some decisions and only being 23 they have been hard I was offered a hysterectomy, early menopause. But as young as 23 I don’t feel I want to go down that road.
Does anybody have any advice? I feel like I am going insane
Thanks miriam
I am 25 and was just diagnosed with endo with my last trip to the ER this past week. My doctors have been working with me for almost over nine months on figuring out a diagnosis. I started my period at 9 years old and it was always a hard heavy bleed for nearly a week each time. I have been on pain meds for as long as I can remember for “cramps”. Everyone told me it was normal and that I would get used to it in time. Then I turned 21 and had my daughter after hurting a disc in my back, and after having her hurt my back again not to mention I bled for a month after having her so they had to do a DNC after. Now at 25 we have discovered this illness that has been hiding undiagnosed and untreated but slightly dulled. I strongly urge everyone that has seen this page to spread the word. I was ashamed and scared of why I wasn’t “normal” and scared to talk to anyone about it. It was uncomfortable and even painful to have sex with my husband which leads to a whole new phrase pain. I can’t hardly lift my daughter up or sleep….. At 25!! Please don’t be scared of the word surgery or procedures they may have to do. Seek help and never be ashamed to ask questions.
I am only 17 and have had extremely painful periods since I first started (I was 11) I was in the hospital monthly due to my pain. I was diagnosed with IBS, and just prescribed pain medications likes hydro and morphine but they made it extremely hard to live my day to day life. I finally went to a new OBG and she put me on BC to help stop my periods. Nothing was working and I was sill getting them, we decided in order to confirm my diagnosis of endo that we would do laparoscopy. I had that about 6 months ago and I was diagnosed with stage 1 but had 3 ovarian cysts. They were unable to remove some of the endo on my right ovary due to it being on a major blood vessel. Now I am on the patch form of BC and it’s helped a lot! Only I forgot to put it on and am currently suffering. The surgery didn’t get rid of my pain a bit even after they lasered it. It reduced it slightly maybe but I am doing what I need to in order to stop the pain as much as I can and save my reproductive organs to later on have kids. It’s a horrible disease and the amount of pain that you go through seems unbearable at times. There’s really no dos and fonts for this disease, it’s all by what works for you. Just stay positive and do what you have to in order to fight through it! Good luck☺️
I’ve been told I’ve got this condition but my periods are light I bleed for two days but light then I have terrible pains when I stop bleeding the pain is like someone has got there hands in my stomach and is stretching it can make me feel faint and very hot
I didn’t have text book terrible period pains either. I hurt more before & after than during & I have endo
Paula
I went to a new doctor today. She is a fertility specialist and sees endo all the time because people that can’t get pregnant have it. I already got a laparoscopy in February but according to my new doctor she saw my pictures and said “this is awful, you need surgery.” I’m super upset as I just got surgery. My doctor says birth control taken continuously wont help and I’d need to take Lupron. Who has experience on Lupron? I want to hear good and the bad and any recommendations you have! I might be seeking a new doctor in new York for another opinion. It is called New York endometriosis center.
Did you have any luck with NY Endometriosis center? I’m looking into that but they don’t take insurance.
Are you positive about that?! My mom just requested information online to talk to them, that’s all that I know. The fact that they don’t accept insurance is awful.
Paige,
I just responded to a post of mine concerning lupron. PLEASE PLEASE PLEASE do not take lupron until you go to a specialist.
Many endo specialists do not prescribe lupron. There are too many side effects to stopping the production of hormones. Some of them you won’t even see for years. I am assuming you are fairly young, just due to some of the posts. Meaning, your body isn’t even fully developed (a women’s body is typically fully developed around 21). Do not stop hormone production before your body even has a chance to finish growing.
Feel free to email me (my username followed by @gmail.com). I can give you info on my personal situation and things that have worked for myself and others I have known. I can even send you all the info I have that the docs have given me. But I am begging you to not take lupron yet.
Paige,
Please DO NOT take Lupron. I was injected with this poison for 9 months. The side effects that the doctors do not tell you about are unbearable. I had chronic fatigue, joint pain, muscle pain basically every single part of my body hurt. All day, every day. And now it has become permanant. I was 31 when I started the Lupron shot and am now 34. It didn’t help the endo pain at all. I suffer from the chronic pain of endo and now to top it off, all the “side effects” of that drug.
Carrie,
I have been made aware. My aunt is an EMT and swears that is is horrible and that I should not take it. I guess my question is, did they give you what is called feedback? It is supposed to give you back hormones so that you don’t have bad side effects, like hot flashes and all that. They said they monitor you very closely by giving you bone scans and all that. I would only want to take it monthly too incase I decide to stop. I am only considering it because my mom knows someone who has been on it, prescribed by the same doctor, and has had zero problems (shes been taking it for 11 years, age 21-32) and my sisters friend who is 19, just starting taking it, prescribed by the same doctor, and is pain free and has no side effects. It sounds like this person knows what she is doing. What scares me is that most endo specialists don’t recommend lupron. We emailed the endo center in new york, and they wrote back they DO NOT recommend lupron and when my mom asks what they usually prescribe, they gave us some bullshit “you need to come in and be evaluated” it would of been nice to have an idea before i drove all the way up to new york when i could of been told over the phone. i have stage 1, all they could of said is this what we do in not so extreme and extreme cases. I really have never heard of anything else besides lupron, surgery, and continuous birth control which is why i’m so flustered. I keep hearing birth control is awful and that estrogen is the problem. Then I keep hearing lupron is awful, and estrogen isn’t even the problem. :(( ughhh
Did you see an endo specialist and was it helpful? I’m considering one in NY but they don’t take insurance.
Not sure if you are willing to travel; however, the Center for Pelvic Pain in Charlotte, NC and Dr. Robert Furr in Chattanooga, TN are amazing!! I am currently a patient in Charlotte, and it’s a team of doctors there, with fertility, endo, and laproscopic experts. I used Dr. Furr a couple years ago and he is a magician. I had/have stage four, and it was so bad I actually had internal organs displaced and attached to places where they didn’t belong. An estimated one hour surgery turned into 5, but Furr was amazing. His a bit quirky, but he is a genius. And they both accept insurance.
My mom has spoken to a friend who was treated by a doctor here in Delaware. She is a fertility specialist. It’s called reproductive associates of Delaware. Her name is Barbara Mcguirk. Because the person she treated is now pain free, I am hoping she will be able to do the same for me. At first I was hesitant because I’m scared to be put on Lupron but apparently the patient she treated has had no serious side affects. I read horror stories about people crying and getting angry for no reason, and having bone pain. I did not want either of those. Again, does anyone have experience with lupron?! Id appreciate it as I have to make a decision soon.
I told her I’ve heard bad things and a book on endo I read said to not take it. She said most doctors “don’t know what their doing” and she said with feedback therapy which is giving me some hormones, just not estrogen, that I would be fine. I am really so torn. I don’t want to do it but I also don’t know what’s left. She doesn’t recommend birth control because it has estrogen. What are my options? She didn’t give me any besides surgery and this. Should I just get the surgery? And no Lupron? I’ve read bad things about it yet people that I actually talk to and use it say good things. One lady I know took it at 20, she is now 31. She has taken it for 11 years and been pain free. And this lady is a specialist but a fertility specialist who claims she sees it all the time. She seemed very sympathetic and confident saying no one knows how do remove it like she does. Also, my mom emailed the doctor in New York who is an actual endo specialist, telling her we were considering surgery and Lupron. The lady wrote back she doesn’t recommend Lupron. I am so torn. :((
I am on the fence as well with Lupron. I had a partial hysterectomy for pelvic pain & when they went in they found endo which they had not found before with the laproscopy. So I still have my ovaries. I took lutera bcp but still am having pain so quit. The NP at my gyno says Lupron is good & if taken with Effexor u won’t get as bad side effects. I’m 36 & I’ve been through almost every drug for pelvic pain. I’ve read the horror stories as well but for some it seems to be a Godsend. Would really be terrible to end up in more pain on top of it all:(. So what to do? I thought u could or should only stay on Lupron for up to 6 months at a time. Does anyone have personal experience with it?? I go to physical therapy for the pain & muscle tension in my abdomen & pelvic floor dysfunction. I feel that maybe if I shut it all down I can see if it is definitely the cause of my pain. I have pain/ intense aching down my legs as well.
PLEASE PLEASE PLEASE go to a endometriosis SPECIALIST before considering Lupron!!!!!! PLEASE!!
Your body needs hormones to function properly. Lupron puts you into temporary menopause, which causes a whole host of other issues. PLEASE PLEASE PLEASE go to a specialist. Most specialists will not even consider lupron.
Hey. For the last two years I have been suffering with pain in my lower stomach, lower back and down both of my legs. It doesn’t happen a lot, maybe once every two months and it usually occurs in the middle of the night and wakes me up. The pain is unbearable, to the point where I am in tears. I have been to the doctors a few times and none of them have an explanation for this so I am still worrying about it. Could it be endometriosis? I’m 21 years old.
Stacey,
First, I am not a doctor! I am just an experienced Endo patient, as well as have some random issues medically speaking, so I have just enough knowledge to get me by, but by NO MEANS am I a doctor.
Honestly that really doesn’t sound like endo, but every experience is different. You have to remember that although people who suffer from endo have random “shock waves” as I like to refer to them as, they are typically not on a timeline, nor are they at regular intervals. Endo pain is typically worse with your period and dependent on the depth of the endo (unfortunately, this is a personal account), happen daily. But, like I said every person experiences it differently. I have had stage for endo for a few years, but mine never impacted my until a doctor spread the endo during surgery. But my mother experienced pains from the time she started her period until she had a full hysterectomy at 30. It’s all different and pain is typically derived from where the endo starts.
Another thing to remember is that they have found that endo typically begins on the left side. If your pain is central or on both sides of your body, either you have stage 3-4 or it’s something else. Just off the top of my head, have you had a sleep study done? It almost sounds like restless leg syndrome, which can cause pain and cramps, etc. http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm. I would recommend you speaking with your doctor about it. Your doctors may not know, because they are not specialists. Specialists are typically where you get your answers.
One more thing, document your pain! Pain regardless of type, ALWAYS has a pattern. Dates, foods eaten, exercise, sleep pattern, etc. Once a doctor can see the pattern, they can typically point you in the right direction.
Once again not a doctor!! Just telling my thoughts. Good luck!!
Hi. I didn’t explain everything so I will explain again. Every time that I get the pains, it is always a few days before I come on to my period. I also suffer with very heavy periods and horrific period pains, to the point where I have to come home from work because I can’t carry on through the pain. I have a friend who is my age who has severe Endo and she said that it sounds like I have it as I sound like her twin. I have had stomach scans, internals etc etc and nothing has ever shown, but I know that something isn’t right and reading all of the symptoms of Endo and having them all, says to me that this is what I have.
Apparently the doctor i was going to see in new york has some real bad reviews. It seems his guy is all for the money. Complaints say he charged someone more money because surgery took longer than expected. how rude. i am not going to a doctor who is purely all about profit. considering he accepts only cash and no insurance, he can go kindly f himself. ill be looking elsewhere on the east coast for an endo specialist. Has anyone ever heard endovan? My mom just brought it to my attention- this too seems like a scam/infomercial. Its apparently some all natural remedy that gets rid of endo with no surgery..i’m not buying it. if only getting rid of endo was that easy, than i think someone would have recommended it already. just thought i’d ask.
I’ve been suffering from endometriosis since I was 15-16 years old and I’m now 42. I’ve had so many lapo surgeries I lost count. I finally had a radical hysterectomy when I was 30 and it was everywhere! I had to have a part of my bowel cut out and resected. Unfortunately, I still have endo and one of the ways I describe the pain is, it’s like a bunch of fire ants crawled up inside of you and just keep stinging you.
The information was very informative and helpful. I couldn’t understand this monthly pain in my groin and all down the left side and the almost inability to walk up straight. This makes me very miserable as the pain is a nagging one and I am not sure what pain meds to take.
Has anyone seen any specialists on the east coast? I have come across Dr.Seckin who works in New york, new york. Anyone heard of him or seen him? He uses wide excision which is supposed to be the best method. I’m still opposing the lupron with my other doctor. I just want a doctor who is actually going to get all the endo this time, unstick all my organs, and make sure i wont need surgery again at least for a little while.
I have been suffering from endo since 5 yrs, 2 laps surgery already done, but none of the surgeries have made me feel better. Infact the cyst are back again and period pains last for 12 days. The pain is so bad that I get totally paralysed and can’t do any work. I’ve tried iui to have atleast 1 child but no luck with that. Really wonder why do we have to suffer so much every month and also become infertile.. Endo is very nasty and cruel on normal living
I am 37 years old. I have been living with endometriosis for 19 years. I have had 5 laparoscopies to treat the endo and last summer I had a partial hysterectomy. I had 8 months of being pain free, but then 2 months ago the pain returned once again! I feel helpless and at my witts end. I have lower back pain, leg pain, pain with bowel movements, and recently I am experiencing numbness in my hands and feet. I have an appointment with my family doctor on Tuesday and I am going to ask to be referred to an endo specialist. Reading these comments helps me to know that I am not alone in living this nightmare!
I’m going to see 2 specialists next week. One is Dr. Kenneth Levey in NYC and the other is Dr. Arnold Advincula at NY Presbyterian. Hoping to get some solutions. Will let everyone know if they are good.
Monica,
I have the same problems except the numbness & my gyn & orthopedic don’t want to attribute it to endo. I can’t find a specialist in the Tampa area. I’m checking into Lupron as we speak cuz out of options and tired of pain meds. I know the horror stories but… I had a partial hysterectomy with no relief & my new gyno said that it was worthless for endo since didn’t take my ovaries & cervix. Just Great!! 😡
Hi I have been suffering for 3 years and had a laparoscopy last year but no improvement. Went back today and made the big decision to have a full hysterectomy as my consultant said it’s the only way to stop it apart from having a baby and that ain’t happening at my age haha. Go back and push for more treatment. Good luck xxx
Wow…I have been trying to find out if my pain was endo and this explains it all!!! Mine is so bad that if I move when the pain starts, the pain levels triple in severity and they last for several hours at a constant extreme level. It’s worsened lately and due to the pain levels & nausea, I’m vomiting.
Also my lower back pain is really bad…some days I wake up and can barely get out of bed and have trouble going from a sitting or bent over position to standing position. I feel so alone with this.
Thank you for this article. This is the first time that I read and article about endometriosis that truly depicts what I am experiencing. I am currently sitting on my bed in excrutiating pain and feeling hopeless. I have decided to finally have a hysterectomy in November, but do not know if I can wait that long.
I had my first laparoscopy on Friday. I didn’t get to talk to the doctor but she told my mom that she removed a cyst from my left ovary which she didn’t think would be causing me pain and she also found “old endo” on the back of my uterus. I go back for a follow up with her in a week but wondered if anyone else knew what old endo means. Does it mean it wasn’t the source of my pain? Also, I still have a burning ache in my right pelvic area. I’m starting to wonder if the endo wasn’t the source of the pain. Did anyone else have a pain like this after their lap?
Caitlin,
Old endo turns black & it’s just a cluster of endo cells stuck to whatever area. Fresh endo is still red like your period menses. I had both during mine. They try to laser out as much of the old stuff as possible. I have pain on my left all the time but they removed endo from my right ovary. It’s hard to say what causes the pain:( I’m going to try Lupron to shut it all down to rule out endo as my source of pain bc I have a lot of muscle spasms in my pelvic floor. Hope the best for u!
Thank you for the reply Paula! I don’t understand why my doctor thinks the old endo and the cyst she removed were not the cause of my pain. I’m so frustrated! What things do you feel like have helped you the most with your hypertonic pelvic floor muscles? Besides pt have you tried muscle relaxers or antidepressants?
Caitlin,
I’ve tried everything u can imagine. I’ve been doing this for 6 years now since I found out that was a piece of the puzzle. I did a lil bit of biofeedback which may be helpful to u. There really aren’t any pills that work. Some dr’s will prescribe a vag suppository of 10 mg Valium & 10 mg baclofen but mine wouldn’t bc not “comfy” w it. I just switched gyn’s so going to try to get it again. I’ve tried lyrica, Paxil, Effexor, gabapentin, Prozac, elevil, muscle relaxers: flexeril, baclofen, Valium, klonopin, zanaflex, & some others:( nothing really works very well except Vicodin which I’m not trying to promote but is my fall back when going out of my mind with pain, like today:(. All muscle relaxers are sedatives so sometimes I use them to put myself to sleep when in pain & don’t wish to be awake or alive for that matter. I haven’t found an anti inflammatory that works at all either. Without pt I wouldn’t be walking around. My pt massages my abdomen, helps release my pelvic floor muscles & puts me on electro stimulation, infrared, heat & when real bad foes ultrasound.
I been having the same it all started like when I had my 3rd child like almost 3year ago and I feel like am pregnant just because of the pain that I can only describe as contractions and very sharp pain in my lower back and chest like if I can’t breed its a horrible feeling my pain goes n comes I am 34 years old and miserable my doct gave me killer pain pills and anxiety pill and stress pills because of the pain I got very emotional and also stress out nit knowing what’s wrong with me. I wish I knew what takes this miserable pain away.
Hi my name is Pamela I am 45. Three years ago I was diagnosed with having endometriosis. I never thought anything would happen because I never at that time experienced any pain then. Now the pain is so bad it has affected me so much in everything I used to do. I constantly feel like I have cramp my back legs pelvis all hurt with nerve like pain its horrible. I am on anti-depressants now due to the stress and anxiety it is causing me. Now I have found out I have fybromyalgia too. Help!
Hello, well im really happy that Im not alone. I have suffer for the past 13years. I have gone doctor after doctor, only to be sent home with ibuprofen 800mg, one time vicodin, and a bills of debts! I had pain that has cause me to strain relationships with family and co-workers because they have never heard of someone with this “issue”. I tried doing everything possible lose weight, eat differently, drink more water, medicines, WHAT ELSE should I do!? Im so tired, when I had health insurance nothing was done, now that I don’t have it. Im getting worst, and need it to get help once again. I had a very embarrassing episode on a vacation just days ago. Where the pain just ran down my legs and I felt light and almost pass out! I was actually checking out at the grocery store, when this happen. I was with family and friends, Only my friend was right next to me when I gave her my credit card because I felt it coming. I grabbed the Tylenol and ask the cashier where was a water fountain. Poor guy looked at me like he saw my expression, I couldn’t tell anymore my facial expression. I was going down. Everyone was looking at me, 🙁 my friend caught me, and I was yelping in pain because I didn’t want to scream. It was horrible. 10 mins later. I was fine…. I was happy because I had 4 more days of vacation and I didn’t want to be miserable…….Thank you for acknowledging that this is an issue women out there are going through.
Have you ever tried Reiki? Maybe it will help! And that really sounds awful. I hope it gets better for you! <3
Have u tried endovan? Haven’t true it but heard it works.
No, I haven’t but it’s worth a try 🙂
I never heard of it, I’ll try anything that could help thank you for the tip 🙂
@ SAM I have not heard of reiki but its worth a try, have you tried it?
No, I haven’t. I want to (though I don’t know if I have endometriosis or not). I’ve heard a lot of people say it helped them with whatever they needed help with.
The only way to know for certain is to have surgery, my obgyn went in a saw I was covered in endometriosis. So bad, it actually pushed my left ovary up against my stomach. I could feel a nickel size knot just by looking and rubbing that area. But it wasn’t a knot, it was my left ovary, which doesn’t work any longer. I had battled this pain for many years with drs just excusing it as “bad periods” or cramping. And finally my latest obgyn (and last one) suggested it may be endometriosis. I had heard of it but was not familiar with specifics. Btw, I was only 31, no children, I’m 33 now and feel it’s coming back. But, honestly, after having surgery I was in awwww. Asking is this what a normal period feels like? And some woman complain about a little cramping. I want to scream….Seriously? U dont know painful periods, painful sex, painful in between periods. And u wanna bitch about a “little” cramping. And my periods are only 3 days now. Sometimes 2 1/2 days. I hope this helps you or anyone else suffering from this.
Have you tried endovan? Haven’t tried it but heard it works.
I heard about it, I’ll try it, whatever eases this pain.
I’ve suffered with this disease for 14 years and was diagnosed at least 10 times with everything under the sun. Until I finally demanded that I had the laporoscopy after doing my own research on all the symptoms I’ve been coping with. It’s now been a little over a year since the surgery and I am back to having no insurance. I am in just as much pain if not more than I was a year ago. I was told when I had the surgery the adhesions were on my both ovaries, my bladder, bowels, and my right ovary had attached itself to my organs. It has also caused my uterus to tilt. I am about to be 27 years and I am not sure if I can even have a child. Sometimes I feel like just giving up. I have lost several jobs because of this silent disease and it really takes an emotional toll on a persons life. Thank you for listening I’m so glad I have found this site with women who can relate to exactly what I’m going through. I’m here for you all as well if you ever need someone to vent too <3
I get relief with herbal medicine. Ayurvedic herbal medicine. A lot of yoga studios have an Ayurvedic practitioner. Can get herbs from them. And there are no side effects. It improves your overall health and immunity. I haven’t had a cough/cold in 2 years coz I’ve been taking Ayurveda on and off. And it’s helping with endo
Thanks so much !! I will def look into that. Anything to find some relief I am willing to give a go.
I had really bad pain for a year and was finally correctly diagnosed with endometriosis. Had the laprascopy and it was so bad you guys dont even want to know both before and after…they took good care of me at dr. kelly roy’s office in phoenix, az, though. Insisted I take LUPRON DEPOT!!!!!!!!! This is a life-saver!! It’s a pain in the butt(literally very painful shot) but it slowly dries up the actual endo, fighting the crap! Yes! It took me a whole ‘nother yr to get back to doing everyday normal routine after that initial surgery and a yr on the lupron but it did help!!! it quickly reappeared (just bad enough I had another laproscopy about a yr ago, and I felt almost back to a normal person with the help of a lot of daily vitamins..I don’t like pharmaceuticals, and my body really hates them! I took youngevity everyday (as best as I could), started taking microgestin b/c-it keeps me from ever having periods which is absolutely wonderful–blood is the enemy!! & 800 Vitamin E as per my new dr (Dr. Scott Crawford in phoenix, az) =>most wonderful laproscopy recovery experience a girl could ask for!!! Sorry, gotta give a shout out! 🙂 Also began Evening Primrose Oil, and Super Thistilyn. Altogether, these made me almost pain free all this yr, just a discomfort at times up til a wk ago when I stupidly thought I could go off them and now I’m hurting like a son-of-a again! Already back on all my helpful remedies and I know it will be better soon 🙂 I hope this helps you all!!! Endo is unbelievable and a couple yrs ago I couldn’t find anyone who described the reality of it like the post at the top of the page-who was not a doctor…by the way ladies doctors dont know everything!!! Believe me I wish they did. Do your own research online and try to go organic Who knows what all those gmos and pesticides are doing to our bellies…I know I hurt worse (endo pain) after eating non-organic… BEST TO YOU ALL 🙂 Katie
Try reflexology I was diagnosed at 22 and told I would never conceive! I caught on at 32 after having a few sessions of reflexology! It’s worth a try x
Where can u purchase endovan??
On their website at endovan.com. If u google endovan you will find other blogs on it where people have found relief with it. There are no side effects and most people feel relief within 2-4 months so it’s worth a try. I just purchased 2 months and keep ur empty bottles, if it doesn’t work you can return with full refund. After hearing everyone’s stories, laproscopic surgeries and hysterectomies are not the solution. People with endo are still suffering after these surgeries so might as well try alternative methods. Also warm castor oil packs help to shrink scar tissue
Hiya,
After years of going back and forth to the doctors they eventually referred me about a month ago. However, the waiting list for an appointment is 30 weeks. I just can’t cope with the pain I’m getting all month. On the second day of my period this week I woke up and was climbing the walls in agony. I couldn’t sit, stand or do anything until paramols and buscopan tablets kicked in. I feel in pain all the time, shattered and don’t know what to do until I get my appointment.
Has anyone gone private for their first appointment or is it not worth it because if they recommend a laparoscopy I couldn’t afford it to be done privately. Any advice is welcomed I just don’t know how to cope anymore.
Thanks,
Beth x
I am 50 years old and recently diagnosed with endometriosis. The pain i have felt in the past has only to increase this last month. I feel as if i am being repeatedly stabbed with a knife all the way through to my back. It starts as a itchy or tingeling pain and then I know it is only going to get worse from there. I have tenderness in my lower abdomen and pelvis all of the time for the last month. I have fatigue and the pain in my back and hips feels as if my bones are being crushed. I have been in ER twice and Urgent Care once in the last month. First trip to ER they gave 3 doses of Morphone with no pain relief. They then gave Dilaudid which finally relieved the pain. I have been on Oxycodone for a month and progesterone while awaiting sugery.
The second trip to ER i went in after my doctor wanted me to go off the progesterone to have a “normal” period before my DNC biopsy. One day off the progesterone I was on Oxy for pain again. 2 days off Oxy wasnt relieving the pain which sent me to the ER for pain management. After 4 doses of Dilaudid the fifth does was a double dose of Dilaudid along with 2 Oxy trying to get the pain under control. What a cocktail that was! I honestly though they had OD’d me in ER. I still was not able to get complete relief and ended up back on Progesteron again. This has helped me to cope until my surgery for a complete hysterectomy this week.
The pain has only increased over time and the length of time the pain has lasted has increased. I am fortunate enough to be self employed so that i am able to cope somewhat with the pain and fatigue. I was diagnosed in ER and Urgent Care with menstrual cramps. Please girls see a gynocologist if you suspect endometriosos. See 2 or 3 until you get answers. The pain is not normal and you shouldnt have to live with it for so long with no diagnosis and no help. There are things that can help you.
I must say i am excited for my surgery this week!
I wish you the best of luck with your surgery!!!
Hi ladies, so sorry to read about the tough times you all have been through! My name is Meredith and I’m 33 years old. My Dad is a retired OB/GYN so I thought surely I was getting the best care & all they could do through the years. I had my first endo surgery when I was 14, lost an ovary at 17, have had multiple surgeries since with my most recent last summer (2013). I’m so tired of being in such pain but I really feel like I’ve tried everything! I’ve done acupuncture, Reiki, craniosacral therapy, and of course all Western medicine has to offer. They’ve put me through medically induced menopause, constant pills, etc. Do any of you have any other ideas for me? I’m running out of them and so are my docs. He even seems weird about pain meds now. Maybe bc it’s been so many years and he fears tolerance and addiction. I’m just in so much pain, I’m terrified! Help!!
Im 28. Was diagnosed with endometriosis, had my operation last june 26th 2014. Its my 2 weeks now. There are times i walk fine but very limited, but today is hell. I coudnt even sit. Both my legs are stuck, when i move it the adhesion hurts big time. Im afraid something went wrong or just part of post opt. Im always alone for 7 hours at home, screaming is my only friend at the moment. I discovered this december 2013, but my doc only gave me pain killers and sucking the ( choco cysts) every month. Very depressing ,as i had to give up a good job.
I am 23 years old, diagnosed with endometriosis after a laparoscopy this summer. I was having daily pain that would get worse around the time of my period for 3 months. My periods were never heavy or irregular. The terrible pain is what got me going to the ER and different doctors. I also had many ovarian cysts which could possibly be PCOS. But anyways, I was still experiencing pain daily soon after the surgery. Once returning to work the pain began to get worse again. I’m guessing because my work is physically demanding (always walking and occasional lifting) which is why I am on a desperate hunt for a new low impact job. I found relief with Native Remedies Endo-Ex. After only a couple days I had the first day in a very long time where I felt like myself: comfort while walking and restored energy.
Although of course there are still bad days, the number of good days outweighs the bad. Having endometriosis demands one to become more emotionally and mentally strong. Mantras helped me a lot with this transition of my life. Take a few minutes during a time where you are relaxed to write down some phrases that fill you with hope and happiness. “I am not Endometriosis. I am …. I am funny, thoughtful, …etc”. “Pain is just but another sensation one feels during the day”. Mindfulness is also a great practice worth looking into.
I am also on a bountiful vitamin regimen:
Selenium (2 pills)
Beta Carotene (2 pills)
Fish oils (3 pills)
Vitamin E (1 pill)
Vitamin C (1 pill)
B-Complex (1 pill)
Cal-Mag-Zinc (3 pills at bedtime)
Melatonin (1 pill at bedtime)
Serotonic (5htp for mood)
For pain (including the back, hip, and leg pain) I take Aleve. I have found that two pills of Aleve helps so much more than Advil (ibuprofen)! And I am prescribed Vicodin which I take as needed for additional comfort. And I am on the birth control Lo-Loestrin which I found to hep more than a progestin-only pill.
I refused to take the pain pills they allllll prescribed me despite being unable to fully stand because of the pain in my belly… My bf in AZ (where it is legal!!) recommended smoking marijuana. I hate to sound like I’m suggesting the use of drugs but it is less harmful than ANY pharmaceutical you can find on the market!!! Seriously, look at the side-effects! It will only help everything for the time being 🙂 but hey when you cant stand up and it hurts just to lay down and cry, you will thank me if you smoke a lil 🙂 GOOD LUCK!
Hello everyone. I haven’t been on here in awhile because i’ve been trying to enjoy my summer and actually have been. The pain I had has been reduced after my first surgery and continous birth control but as i mentioned, I still felt like i wasn’t completely cured of pain and seeked out a second opinion. The doctor assured me my first surgery was only for diagnostic purposes and to be completely healed, she wanted me to let her do a more thorough surgery. She is having me take injections for 7 weeks or until my body starts having hot flashes. From there, she said it is safe to do a thorough surgery and I guess afterwards I would continue using lupron. Today will be my third injection. I’ve been letting my sister do them as she is a vet technician and is familiar with needles. So far I’ve had nausea/stomach aches from the injections but I guess it will all be worth it and hopefully I can stick with it for as long as I need to. As of now, surgery is scheduled for september 4. My only problem with the injections is finding the perfect time to do them, especially since i rely on my sister to give me them. They say to take it every time at the same day, but with work, and then other social events, its hard to plan the perfect time. Who wants to carry needles and all in their purse? not me 🙁 Does anyone have any experience/advice with giving themselves their own injections/the perfect time to do them?
Paige,
I did one shot for a month & am supposed to go to the dr on Tuesday to discuss doing the 3 month. I have been worse so I’m not going to do another. I was thinking I should bc one month isn’t long to see results but I’ve had terrible aching pain all over worse than usual. I haven’t had night sweats or hot flashes though so not really sure if I’m in menopause…. I didn’t know that they had shorter shots. How long is it supposed to take to work?
she said 7 weeks. i can’t see myself sticking with the lupron after surgery, especially without addback. its my 10th day and like you said, so much achiness.
I felt better on Lupron than at any other time. Even after hysterectomy. Good luck!
Update on the lupron- I started it on july 7th. today is july 17th. in the very first couple of days i was very tired and had no energy. Now the issue is aching, especially in my legs. I work out everyday at the gym or go for runs outside and today i was limping home. as i type my legs feel like they have a charley horse, they are tight and painful and extremely achey. i stretched prior and it was only a 10 minute run. its something i’m used to but on lupron i feel like i’m exercising for the first time. It makes me extremely sad to know that my fitness routine is in jeopardy now that I have started the lupron. Anyone else experience this? What else can I expect? 🙁
Paige
Are u going to stop soon? I only ask bc there have been so many posts about Lupron causing permanent damage & people still being in pain after they stop treatment. Just be careful!! Good luck:). I have been prescribed vaginal Valium suppositories now to see if that’ll stop my pelvic floor spasms. Hopefully I can sit better anyway…
Paula
No I’m trying to be a trooper. I guess it’s because my sisters friend is all better and I want that to be me. I’m already too far in now but trust me if this continues I will be calling the doctor.
And thank you for your well wishes. I will keep whoever wants to know updated on here 🙂 I’m hoping once I’m pain free to spread more awareness on how to get help.
I have had endo for around 3 years I would say. The pain in my legs, my pelvic area even when I’m not on my period is unbearable. I am emotional constantly, being able to burst into tears at the drop of a hat. It’s awful. I am due to have a laparoscopy soon and am hoping that will help. I am constantly weak and tired. Just want it to go away.
Hello! my name is Paula, I have diffuse adenomysis, fibroids, cyst and possible endometresis. I’ve been on birth control pills, lupon shots. I even had uterine fibroid embolization. My uterus is 14mm, I have constant pain daily. My hysterectomy (partial) is scheduled for August 2014. I’m so depressed. I take motrin 800 and Norco ATC. I really don’t want to have surgery but it is the only choice. Just thought I would share my story
Firstly I would like to thank you for making this page available.Sometimes with all the help from family and friends, sharing something like this with people who experience the same thing can be comforting – Just knowing that you are not alone. A few years back I started with pain in my lower abdomen and thighs. After many trips to see my GP I was told I was suffering with ‘bad periods’ over the last 3 years it got worse. 2 Years ago I was taken to A&E where I was examined internally and told that my bowel was full. My husband was not happy with the diagnosis as I struggled day in and day out. Eventually I changed my GP who was previously a gyny, Upon giving him all the details of my symptoms he told me straight away that it was Endometriosis. Last year I had Laproscapy surgery where they lasered away the adhesion’s, I got an infection and was rushed back in to have antibiotics through a drip. 4 weeks later was my wedding day and I was still swollen and in pain. After speaking with my GP he told me that sometimes the laser treatment can cause more adhesions. I had another appointment with the Gyny 4 weeks ago and they are going to cut it away this time and also have the bowel surgeon have a look to see if the adhesions have caused my bowel to stick to anything. I have been signed off work, I cannot go out, I walked for 5 minutes to my local shop this morning and had pains as though I was getting a period – One of which I have not had for 5 months now. I really hope this surgery helps, I cannot cope with how I feel, I sleep so much and constantly feel tired, emotional and sick to the back teeth of taking pain killers. 14th August is my surgery date…. LETS DO THIS!!
i’ve suffered with Endo since 2008. been through two surgeries (most recent was 6/5/14). My last surgery, my doctor said my endo was so angry and had taken over and she had never seen such a case before. I have gone to the ER 4 times in the last 6 months. i have great great great doctors and insurance and am so lucky that they know what i have, understand it and do everything they can to help. after my surgery i was offered Lupron, but refused it. i am planning on having my second child really soon, and after my second child, will ask to have my uterus removed/keep at least one ovary. it seems to be the only solution to my issue. right now, it is 9 days before my expected period, and i have such pad cramp pain on my left side and it is radiating into my left leg and left lower back. The only thing that works for the pain is norco, but i refuse to take it at work or when i am alone with my three year old. i wouldn’t wish this pain on anybody ever 🙁 i am sad to know that other people go through this, yet relieved to know that i am not the only one. hang in there everybody!
I have constant back pain and find it hard to get comfortable at night. I have a swollen stomach, fatigue, bowel problems, aching after sex but because I’ve had a clear ultrasound a few years ago and my periods are bareable I’ve never been sure. Now I’m going for another ultrasound but I’m not sure its worth going for surgery, I’ve not had sharp stabbing pains just cramps that I assumed was from dehydration. Has anyone else had ambiguous symptoms and then had the exploratory surgery?
I been haven really bad pains in my left hip and it started three days ago and then I started to bleed like I was on my period but I.just had it about a week ago and now my right hip hurts I just want to know if anyone has and advice about what could be causing this.
Hi my name is Tracey and I am 50 years old. I am 4 weeks post op from my second surgery for endometriosis. First time I had a laparoscopy to laser it away. This time I had a laparotomy to remove a 5cm endometrioma from my right ovary. They ended up taking my right ovary and tube as they were too badly damaged to be saved. My left ovary is adhered to the back wall of my pelvis, my bladder is adhered to the front of my uterus and my bowel is adhered to the back of it. My surgeon could not free these adhesions as he had done so much work in there that he felt that it was unsafe to do any more. I have constant backache and all the wonderful symptoms that come with this awful disease. The worst, for me, is the fatigue and the fact that when I am at my best, I still feel unwell. Surely menopause is around the corner!
Hey, i need help please.
I had the surgery january 2012. i have a mild case of endo that is also on my intestines. Dr has me on continous birthcontrol. I dont know if its the birth control or what, but lately iv been in more pain and an emotional wreck. I dont like taking birthcontrol for thw rest of my life, i just want my body to do what ot was meant to do without drugs. I dont know to have another surgery or what.??????
there are also days i eat everything, and days i dont eat at all. Constipation is also another issue.
Im only 20, should i do another surgery? is really gonna help any??
Hello, I was on the lupron for a month before my surgery and then they told me i could stop when i got hot flashes. i stopped taking the lupron which was nice. a couple days later i had sex. i bled a little after and thought nothing of it. then i started panicking because i’m scared bleeding would cause me to become unsuppressed. i’m calling the doctor tomorrow to ask her about it but i’m extremely nervous. if i’m not suppressed anymore from a little bleeding because of sex, i’m going to have to redo the month of lupron and postpone my surgery. i really hope that doesn’t happen 🙁
Paige,
How are things going? I stopped the Lupron bc I couldn’t take it anymore & my dr said it wasn’t working since I was doing so much worse after a month but I don’t think I was on it long enough. I switched to another specialist & they even said it wasn’t long enough & I would be worse n4 better but oh well. I posted to Ruth about the other procedure I’m having again bc they think it’s more muscular than endo. I hope & pray u are getting relief:)
Paula
I had my laparoscopy on Thursday. The pain definitely gets worse before better on Lupron. However, I do feel no pain. The side effects like hot flashes still bother me but it’s because I have no been on add back therapy long enough. I just started the hormone replacement (add back) the day after surgery and it’s made me nauseous but I need to get used to it I suppose. I will keep you all updated! 🙂 thanks for asking
Paige,
So u were only on it for one month or are you still taking the Lupron? If u did or when you do stop are you supposed to go on the pill continuously? Good for u! Pain free, I’m so jealous!! Congrats:)
I’m not pain free yet so I wouldn’t say that! Lol I’m currently having bad back pain that I’ve never had before.. Maybe I slept weird? But I do know that it takes time to be able to tell. After my first laparoscopy it took awhile but I really did get relief from it and taking the pill continuously. I am not taking any pill, unless you mean add back which I am taking everyday. I have to take the Lupron once every three weeks via shot so I’m due for another one soon. I don’t know how long I will be on the Lupron but I will keep everyone informed. I’ve only been on it since July 7. Definitely not used to it yet.
reading some of these stories is really scary. My pain started in March, it was manageable then, it has seemed to be getting worse over the months and now, this is day 24 of being in constant daily pain, and it just seems to be getting worse, it feels like there is something that is pulling inside me and when my bowels and bladder are full, it hurts even more. My dr has put me on naproxin and tylenol three, but they dont seem to be working at all. I have made many trips to the er, and they have done ultra sound after ultra sound. I had a partial hysterectomy at 24. I got in to see an obgyn and I am scheduled for a laporoscopy at the end of september. Is this something that I am going to have to deal with for a very long time now? or will the procedure help?
Hi my name is Ruth I have been diagnosed with endometriosis and have had hormone therapy for 6 months and taking codiene, the effects of which are wearing off. I’m due for an operation in two weeks and can’t wait. The pain is unbelievable- back pain pelvic pain and lately the worst is the leg pain which now hurts constantly. I’ve a two and four yr old and work part time, to say it’s a struggle is a massive understatement.
Feel like I’m half alive as every aspect of my life is affected. I know I’m lucky to have my kids though so feel very blessed despite this. Hope you all get the treatment you need x
Ruth,
I wish you the best during your op. I know what that’s like and I hope it goes well. You are a strong woman and so every women who goes through this. I know the leg pain you are speaking of and I am so glad to know you speak of it too. I wake up during the nights because of it and you can’t do much but curl up and hope that you can just sleep peacefully. Just remember we are all feeling it too!
Ruth,
I have terrible leg pain along with other pains but the legs is the most excruciating besides my left pelvic floor. Has any one given u any insight on what causes the leg pain?
Paula K
( there are 2 of us Paulas on here now )
My consultant said it was related to sciatic pain, I always thought it was referred pain. The leg pain is actually the worst bit somehow, and groin pain. I’m having an operation on Saturday, very anxious about it but hope it solves the horrible symptoms….x
Ruth,
What kind of surgery are you having? The muscles throughout my pelvis & IT bands in my legs are so tight & spastic I am going to have a manipulation under anesthesia with Botox injected into my pelvic floor & abdomen for the muscles that won’t relax. I had only my uterus out for endo but have still been in tons of pain bc of my groin & legs. I see a Urogyn in Tampa. I have had the other procedure b4 & it helped a lot. I tried the one month shot of Lupron but didn’t do it more or long enough bc my entire left side from head to foot was so tight & painful it was excruciating. I get a very deep aching pain down the back of my legs & any pressure sends me over the top. I go to physical therapy once a week for my pelvic floor spasms & it really helps. Do u believe your leg pain is sciatica?
Hi my name is Amy and I am 24 years old. I have been struggling with endometriosis for a very long time.
I was 14-15 when I first started getting the stabbing like pains, which are in fact so painful they will stop me almost instantly and shrug over in pain. the longest I have ever had to endure this is ten-15 seconds at the max. but it was bearable,although the older I get the worse it is getting. I have constant fatigue, pain and now server bloating (I would pass for 5-6 months pregnant). I also suffer from scoliosis quite bad. so its hard to determine which is causing my pain. but I am always in it. even getting out of bed I feel my back hurting. its something that I haven’t let take over my life. I work fulltime – wife and step mum to a 7 year old. I have not been to a doctor in a long time – only hurting myself I know. but I am just soooo scared of the thought of someone telling me I will be unable to have my own biological children. Im not too sure what I am after posting on here. but it feels nice knowing that I can talk to people who know what the hell I am talking about !!
Amy, You must go to the doctors, avoiding it wont make any bad news dissapear, although I do understand you are frightened. Its highly likely that with the current treatment for endometriosis that you will have a good opportunity to try and conceive. I read somewhere that its common misconception that you cannot conceive with this, it can make it harder and take longer but it is definately possible. Before you even get to that point though you need diagnosis and pain relief. Please go xxxxx
Ruth, most people do not understand the concept of being a ‘nice person’ – although you obviously do.
Thank you for you kindness. xx
I been in pain for 11 years ever since I had my son and yes the pain is unbearable feel like my Insides are being ripped apart. It hurt sometimes jst to put a shirt on but I still haven’t been probably diagnosed an as far as a job goes so much pain makes it difficult to work.
I am 22 years old and I was diagnosed with endo at 17. I had a solid “chocolate cyst” that was found during an ultra sound for my kidneys. The cyst was so large and solid that it appeared on the screen as an unknown mass. Ironically a few days later I was hit with this unbelievable pain. I was rushed to the hospital and a few days later they decided it needed to be surgically remove because of how large and solid the mass was. I asked for a picture of it (picture two large softballs conjoined). To see such a thing that was inside of me tested me up and my family. No one knew how long the mass had been there for (probably years since it was so large and solid) but I remember ever since I first got my period the pain was unbearable. Everyone thought I exaggerated my pains or even when I mentioned that I got back aches and leg aches no one understood. I would say that I am lucky that my pain is not severe everyday (only during my period will it feel like death). I do however experience that uncomfortable tugging or like a bowling ball weighing my ovaries down. Till this day I am a till trying to find answers. I love children and one day hope to be a teacher as well as a mom, but with endo I fear everday that I may never ever be able to hold a child of my own which breaks my heart. I wake up in the middle of the night with aches from my back down to my toes. It’s the oddest thing to think that endo can cause such pain but like every women with endo would say, I just can’t explain the feeling.
I suffered with endometriosis until I found a reproductive endocrinologist who specialized in laser surgery. My main symptoms were painful periods and very painful bowel movements which felt like I was delivering a baby. A 6 hour very meticulous surgery at age 40 relieved me of all of my symptoms for years. I went thru menopause at 50 and assumed I would never have to worry about endometriosis again. Now at age 60, following a terrible stomach flu some of my symptoms have returned. I’m wondering if it is adhesions. Right now I’m having pain at the crease between my abdominal and thigh. Has anyone experienced this?
For those of you who are worried about becoming mothers, please don’t worry. If you have trouble conceiving see a reproductive gyny have him or her remove the endometriomas and you will have a very good 6month window to conceive. Then the pregnancy will further shrink them! 🙂 Please don’t worry but see a sub specialist. Most regular gynecologists do not know about endometriosis. Whatever you do, don’t let anyone tell you that you need a hysterectomy, you don’t! Hysterectomy does not cure endometriosis.
Hi Jan
If you are having pain “at the crease between my abdominal and thigh” then I suggest getting checked for an inquinal hernia. That seems more likely than your endo symptoms returning after a bad stomach flu. You could have popped a hernia while having a BM, or lifting your purse.
Along with Endo (dx after 20 years of suffering), I’ve also had 9 hernia repairs.
Good luck!
Thank you for telling about the possibility of an inguinal hernia thankfully I am feeling better now but I will keep this in mind if symptoms return. Thanks so much.
I’ve seen many people reference pelvic floor pain on here in relation to endometriosis. What does it feel like and how can I tell that pain from the other?
I cannot describe how happy I am that I found this blog. So many blogs you read haven’t been updated in months or years, and yet this one is always being updated with comments. Today I went to my post op and looked at the pictures from my laparoscopy. She took about 20. It was crazy to see what was going on inside. Adhesions from my bladder to my pelvic side. Little spots of endo. My bowel completely stuck to a wall inside my pelvis. She took action pictures of her actually cutting the tissue away from the side and then showed the after. It was seriously amazing. My previous laparoscopy had maybe 3 pictures and it honestly showed nothing. It was probably because i only got two incisions and she couldn’t see everything. My previous doctor also burned everything off via laser. The new doctor I go to believes in cutting out the bad tissue, not lasering it off. And she was also able to unstick my organs. What made me relieved was she also shot blue dye through my ovaries or something and said I am still fertile so that made me very very happy. As for now the plan is to get my shot of lupron every three weeks, and take add back therapy everyday. She said there is no harm in doing this since add back gives me enough estrogen to be okay and i also will go for bone scans and bloodwork and what not to make sure i’m not having any bad long term effects. I will keep everyone updated on how I feel because right now I still feel crampy/achey from the surgery and it is honestly too soon to tell. As for the lupron right now, I feel normal again. When I first took it without add back I felt tired, had decreased sex drive, and got hot flashes. I feel normal now with the add back.
I just came upon this site and it is very helpful to hear about so many other women that have been though so many of the same frustrations, confusion, dismissive health care professionals and pain that I have experienced since my late teens/early 20s. I am 38 and when I was around 25, someone told me about endometriosis as I had never heard of it before. She told me to try her gynocologist, who did a quite painful and uncomfortable internal ultra sound (I really dont remember the details) of sorts but said she was surprised to find that I “didnt have it”. However she said even if I did, the only treatment would be birth control pills. So I went on them for over 10 years, and they actually did decrease quite a bit of the pain, to where I rarely had to take days off from work as previously I had before, averaging a day off a month or every other month. I stopped the pills 2 years ago, as I no longer wanted to put those hormones in my body anymore and also wanted a break from different side effects of the pill itself. The pain has increased tremendously since, actually worsening than in my 20s. In fact I now experience “in between periods” pain, thinking at first its what ovulating just normally felt like, but from researching more on endo this past year it seems to fit the description of symptoms. No ins now, so I wont be able to do much in the way of more diagnostics, but could I have it even though I was told otherwise by one gyno? Other (many) drs over all these years have pretty much dismissed my inquery to them. Also, even though most symptoms have been spot on for myself (including several almost passing out episodes when the pain comes on!) from my own research, it seems as though heavy bleeding is a common one. However, I historically have always have very light bleeding, and lasting only a day or two. Which I am told by my “normal” friends (whom I love but arent very sympathetic) that its not “normal” to barely bleed especially with all the extreme “complaints” of pain. So sad, confused and frustrated. Wow this was quite long…apologies.
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I am so glad I found this site!! For me, the story began 5 years ago after getting married and quitting birth control pills. First, I started spotting a couple days before my period; but after a few months of unprotected sex and not getting pregnant, I decided to visit the OBGYN, presenting both of this issues. After some blood work and an endovaginal sonogram, he diagnosed me with anovulatory cycles ( no ovulation between periods) although I would get my period every month, which is not uncommon. He gave me the option of birth control pills or Clomid, I turned both down, and decided to wait. Now, 3 years later, ready to grow our family and spotting for 7-10 days before my period l, indecided to follow my gut instinct and look for ansecond opinion. After much blood work, biopsies and another sonogram, the new OBGYN believes I have endometriosis. I have 3 out of 4: retroverted uterus, spotting and 5 year infertility- minus the pain! But… From what I have read here, it seems to me as if the vaginal stabbing sensation I often feel, the back and leg pain are NOT normal at all. My laparoscopy will be on 9/16, hopefully all is well and I am able to have kids and my fallopian tubes are not as damaged as she seems to believe.
Hi! I have found this site very helpful, i think it describes perfectly what it feels like to have this disease, I was diagnosed with endo a few months ago, and had surgery back in May of this year, but i’ve been dealing with the pain for a few years now. At the begging I felt like nobody actually listened to me, i had difficulty walking, my legs hurted a lot, and still do but not as much since the surgery, what my doctors always told me is that i was overweight and had some cysts, i took me a long time to finally discover what I actually have.
I think is really frustrating when people don’t listen to you, because the pain can be really unbearable. I’ve been on medication since May and i feel better, but the pain in my legs is really annoying, i can’t be standing for a long time because the pain gets worse and my legs feel tired.
What i discovered recent is that sleeping in foetus position has helped me a lot, i will soon start going to the gym (i just to go last year, the pain wasn’t so bad) see if it helps me 🙂 .
Stay strong, ladies!
Hi my name is Nicky.
Firstly I’d like to say that it’s no nice to hear other peoples stories and know that I am not alone in this.
I have been suffering from chronic abdominal pain for over 5 years. 4 years ago I was diagnosed with PCOS and was put on a combined contraceptive pill. I was still suffering from abdominal pain just before a my monthly period. Last year the symptoms worsened and were affecting my bowel habits. I was sent for a colonoscopy and was diagnosed with IBS. For this I have been taking buscapan for pain relief.
More recently over the last few months, my blood pressure had sligthly increased and I was getting headaches and was taken off the combined pill and put on to micronor. I have taken this for a month and the pain has been excruciating. I went to see a gyny through private healthcare who said that I may have endo. And MRI scan was done- this only showed the cysts around my ovaries (due to the PCO) but did not show signs of endo. The consultant advised that he was unable to carry out the laporoscopy until December and said that the lapo is the best way to see if I do have endo. I since went to see my GP on Tuesday and was sent to the hospital as he thought I had a cyst. An internal was done and I was again told that my symptoms are of endo.
I haven’t had a period in 6 weeks and have tested negative to a pregnancy test. I have contacted my private health care to see if I can see another consultant to get one more opinion. I’m currently taking mefenamic acid which is causing me to have awful stomach cramps.
I did find that when I was on the combined pill, my symptoms weren’t as bad, as the pain would go away after a period and would gradually come back before a period however now that I’m on micronor- the pain is excruciating.
I haven’t slept for weeks, and have been off work for over a week. Thankfully they are very understanding.
I was wondering if anyone had any suggestions for pain relief- I am due to go on holiday in 3 weeks and am worried that this pain will ruin it for me.
Thanks.
Nicky.
Hi Nicky, hope you feel better soon, for the pain i take diclofenac, it helps me a lot i think is stronger than ibuprofen, i also put warm pads on my abdomen and legs, my pain is mostly around my legs, so when i’m in bed i like to put a pillow below my knees because it hurt me when they are stretched.
I hope this helps a bit.
Hi Wen,
Thanks for the reply and the tips. I will definitely try the pillow thing tonight as the pain is now see early affecting my legs- they feel so heavy! I’ve now stopped taking mefenamic acid and am only taking over the country painkillers. A lot of the painkillers prescribed to me are triggering off my IBS symptoms and are making me feel worse.
I have my laporoscopy booked in 2 weeks which I am looking forward to in a weird sort of way. I guess it means there might be light at the end of the tunnel. I went on holiday last week and was in pain throughout the holiday however I did not let this ruin it for me! I’ve now been off work for 3 weeks and have been signed off for another month- thankfully my employers are very understanding- I couldn’t be more grateful to them.
Has anyone on here had the lapo done?
Thanks.
Nicky
Only found out I have this and what to know do the injection help? Or should I get them?
Hi my name is nancy I’ve had chronic pain for several years since my hysterectomy ,and I still have severe pain that comes and goes in my lower left side of my stomach . Feels like I’m being stabbed. The pain goes down my left hip and buttocks around my left side back and also into my calf. I am barley able to walk during the pain .After the pain subside I have severe bloating and gas! I have such severe bloating all the time. Will someone tell me if this sounds like endometriosis? Help
Glad to know I am not the only one.. I am 27 years old this all started two years ago when I had my daughter c section ..me and my friend was pregnant the same time and both had come sections.. She got better and my pain got worse.. When I finally got my normal period I started working.. Pulling trucks full of food.. I would get very sharp pains I knew my period was coming in two week.. The pain got worse to the point I have to quit my job.. So I went to my doctor who delivered my baby.. Told me everything looks good.. Kept going backo
Glad to know I am not alone.. This all started when I gave birth to my baby girl I had a c section.. My friend who was pregnant same time had a c section before me so I knew how it would be like to heal.. Well the pain never stopped.. Once I got my period they would be so heavy I would get pain two weeks before and after.. The pain started to effect my work I had to quit.. I am in pain all the time if I do to much house work my stomach swells up like a balloon.. I can’t wear underwear after awhile it makes it hurts.my doctor has had me seen a surgeon that gave me shots to numb my nerves worked for a week went back this time a month.. Then my ob puts me on birth control seemed to be working till I bleed for four week we also tried the depo which worked great till I bleed for weeks.. So I figured I give the depo one last try.. And it hasn’t helped me one bit beside no period.. The pain is ten times more painful I swell up that any kind of pants sweat pants hurts.. My left side feels like it’s going to burst open.. I have an appointment Oct 14 giving me a ultra sound then I get to see what he has to say.. I can’t live like this can’t wear nice clothes because they don’t fit from being swollen and I have to run after a two year old
Am having a severe pain but in sonography there seen nothing my laparoscopy also done in 2008 but now also am suffering from endometriosis pain even I am gaining my weight too. I am also on pshychatrist medication. Please suggest me the right decision. My age is now 35 & even am having a very very scanty menses please help
Hi Fara,
Sorry to hear you are in so much pain. Might be worth having another laporoscopy done as it’s the best way to see what’s going on. And if it’s endo then hopefully they can laser it off in the same operation. Maybe also speak to your GP about painkillers.
I find that a hot water bottle and plenty of rest helps- and to try and stay stress free (which is hard with this pain!)
Hope this helps x
I have been having horrible pains since my dauggter was born in 2008. I am now almost 31 and it has gotten worse. I called my doctor yesterday in hopes that I can figure this out. I never had painful periods when I was younger and I was pretty regular. That’s not the case anymore and I am pretty sure I can’t have any more babies because of this… I haven’t prevented pregnancy for a year in a half and nothing. I have two healthy children at least but it is disapointing to know I probably won’t be able to have anymore. I have times I hurt so bad I can’t stand up. It goes away shortly after but I don’t want people at work or family to see me in pain. Its embarrassing and I don’t want to be a complainer. I go about my daily life but some days I wish I had just stayed in bed. I just keep focused on my kids and remember I have to keep going for them. All I have tried is Ibprofien. I take 4 at once but even that doesn’t help somedays. My mom had a hysterectomy at age 28 because of it. My sister also had it so I am high risk. I know it could be fibroids but with history alone I am sure its endometriosis. I even showed my boyfriend my swollen tummy yesterday. I even woke up from the pain last night which is new. Normally I can sleep through it but it was early morning and my pain meds wore off. I am hoping to find a solution to this soon. I already have it in my mind I can’t have babies. Its sad but like I mentioned I have two healthy kids. Its just hard reaching these milestones when you are still young.
Don’t give up yet! Get a laparoscopy to diagnose if you have it. If you get that, they can clear away the endo and check to see If you are still fertile! My doctor shot dye through my tubes and said I was still fertile. Now I am on Lupron to make the endo shrink and stop growing. But don’t give up hope yet! Especially if you want to have more kids! You are still young!!
Well done you.
You have been inspiring to me in my quest to produce a leaflet on endometriosis. Yes there are UK and european and american leaflets but I want to produce something written by a local woman living with endometriosis for local women.
Hi everyone,
I am 19 years old, frustrated, in pain daily, and still trying to figure out what is wrong with me. I have had symptoms of rectal bleeding, lower left abdominal pain, break through bleeding between periods, back pain, nausea, dizziness, fever for two months and four days now. The pain the last couple days has only increased and seems to be “spreading” down into my groin. I have seen multiple doctors, done a colonoscopy, endoscopy, capsule endoscopy, had two CT scans (one of which showed an enlarged left ovary), and two ultrasounds (showing nothing on the left side), blood tests, CA-125 blood test (which was elevated). I am waiting on another appointment with my OBGYN, but I think the next step is either a laparoscopy or a laparotomy. I am just so frustrated, crying at least once a day, and now I can’t focus in school. I am in college, on scholarship for cross country which I now have to medically red shirt because the pain is worse when I run. Doctors are thinking based on my symptoms and family history it could be endometriosis, but we also have a family history of ovarian cancer. I just don’t know what to think right now, and I am beyond frustrated with this pain. If anyone has any advice I can do prior to my surgery, or any questions to ask doctors, I would greatly appreciate that.
Thank you!
Hi Kenzie,
First off I am 21 years old. My pain started when I was 17 and pretty much ruined my life since then. It was not until last February that I made the decision to switch gynocologists. You have to be an advocate for your own health. What I mean is do not take no for an answer. If you don’t think your doctor can help you or is listening, you need to actually tell them what you want done. I had to tell the doctor I want a laparoscopy, I think I have endo. I told my previous male gyno that and he just laughed in my face. So when I switched doctors, they did it for me. Getting one is a piece of cake. I mean it. The recover time is about 3-4 days and the scars are super super tiny. It will tell the doctor everything the doctor needs to know in making a diagnosis. Don’t hold off any longer. I’ve been through the same things you have. Ultrasounds, scans, plenty of pelvic exams, blood work. you can’t see endo through scans, only a laparoscopy. Endo affects everyone differently. Because you have a history of ovarian cancer please make them aware of that! Especially if you are having bothersome symptoms. When I didn’t feel good I swore I had everything you could possibly google. Don’t freak yourself out too much. Just talk to a doctor and get a procedure to be diagnosed.
I know I have this. It feels like my V is being torn open by a set of vise scripts. I am sitting on a heating pad watching football. For the past few months my back has locked up and been killing me. I can’t sleep on back, side, belly or in any position cuz it hurts like hell. I am 42 with tubes tied 19 years ago. I have had terrible periods since tubes tied. I recently was on the BC shot to allieviete my periods an it helped big time. Problem was I gained 30 pounds on it. So damn if I do, damn if I don’t.
I am looking into the IUD for the arm cuz my quality of life sucks w having periods again. Having this causes me to have back pain, leg shots of pain, cramping shocks in abdomen, clots, feeling like a vise scripts ripping my bones apart in my V, sweating, and breast oh so sore.
I need to fix this pretty much done at my age having kids and this pain has goto go!
I have been dealing with this pain for 4 years and no doctors have been able to help me, they send me home with ibreprophin or a new birth control….the pain starts in my stomach and goes to my legs and back and walking is not an option. Some people do not understand this pain and it can be hard to explain but I want everyone to know that it is REAL and not a joke, I am happy and Blessed I have a supportive husband and family…..still no doctor has been able to help me but I will NOT give up.
I’m sitting here with mixed emotions, comforted to know I’m not alone in suffering yet saddened to know there are others out there as I would not wish this disease on my worst enemy. I am no stranger to pain; was diagnosed with IBS and colitis at 14 and was in a bad car accident at 23 that left me with bulging discs from the top of my spine down, reversed curve of the cervical spine, post-concussion syndrome, TMJ. Treatment for these injuries resulted in a last ditch effort to relieve some pain by receiving facet joint injections, the doctor hit my spine with the needle and caused the feeling of electricity to run up and down my arms for 6 months.
Pain and suffering is what I know.
I had no symptoms of Endo, and to my surprise this disease crept up on me in what seemed to be a blink of an eye. I was rushed via ambulance to the hospital with what I thought was a ruptured appendix only to find out I had a large ovarian cyst rupture. After laparoscopic surgery, I was told I was lucky to have been diagnosed with Ovarian Cysts and Endometriosis so late in life (I was 35) and that I should have no further issues as menopause was around the corner. I wish I could say that diagnosis was correct. Two months post-op, I found myself back in the ER from cysts on both ovaries and one was bleeding which landed me on bed rest. I decided it best to get a second opinion, changed doctors and took the recommended ‘watch and wait’ route. The cysts continued to grow. And as I complied with the order of bed rest, I found myself googling Endo and Ovarian Cysts and found some of the worst horror stories I could find. It was then that I went into denial and almost convinced myself that it would all go away if I didn’t think about it, if I ignored it. But it’s hard to ignore something that reminds you frequently it’s still there. So I sucked it up and took the suggested cocktails of medications, hormones, birth control. What I’ve learned is pain is not something you can control, the only thing you can control is your reaction and how you deal with it. And while I was on anything containing hormones, I felt like everything in my life had spiraled out of control (if I were to go into all the side effects I experienced while taking birth control, I’d probably be admitted into a mental hospital…my whole thought process got THAT bad). Severe anxiety took over with the first twinge of pain as I anticipated the feeling of the searing hot poker skewer through me and stab me over and over again. While I’m not recommending anyone from stopping their current prescribed regimen, I had to stop mine. I needed my mental capacities about me to properly deal with the current situation I was in, to take control of my reaction to the overwhelming pain. It really is amazing what we can learn to live with when we no longer succumb to the fear of this unknown disease and accept that this is the hand we were dealt.
I made my way back to the doctor, who ran a series of tests and scheduled another emergency surgery. From what I’ve been told, I’m one of two of the worst cases he’s seen. He was not prepared for what he saw when he opened me up. Had we discussed a full hysterectomy, he would have done one. The adhesions cover nearly every organ in my abdomen and the doctor was amazed I could get out of bed in the state I was in. I work full time and am a single mom, I do what needs to be done.
We put another (and hopefully final) surgery on the books today for a full hysterectomy. I am hopeful this early onset of menopause resolves my issues, but I’m also realistic and accept whatever this next step in life is.
Hi,
I eventually got an appointment with Gynaecology on Monday and the doctor carried out an internal where I was jumping around in pain when he touched the lower left side of my stomach and inside. He said that I should have a laparoscopy to check if I had endometriosis but then they did a transvaginal ultrasound where they said the left side of my womb and left ovary were tilted to the right. I have been in terrible pain since this was done. A drawing pain in my left side. Smears have been painful in the past but this pain was similar to the pain I’ve felt after having sex.
I was wondering what the tilting may mean and if this is a symptom of endo?
Any advice is welcome…..
Thanks,
Beth x
Well, I didn’t have endometriosis until after my 6th child was born. I’m 37yrs old.
I had a hysterectomy a little over a year after my last baby was born, then 15months later the only ovary I had left had grown a cyst and it was about to burst, that’s when my endometriosis was found.
It explained the new pains I was having. And now, I find myself so tired and I get these pains every now and then. I’m currently under hormone treatment to decrease its growth. But I’m afraid its growing faster than expected as I feel uncomfortable.
I hate this… I really do.
Today is one of those days were I’m really just not feeling well at all. I’m due to start my cycle today and the first day is always the absolute worst. I seem to get this excrutiating pain in my stomach that causes me to think I need to use the restroom. The best way to describe the feeling is like the worst possible case of food poising. I will be drenched in sweat, shakey, naseauted, disorientated and the abdominal pain makes me feel like I will pass out. After about three hours of feeling as if I may die it may go away only to be accompanied by stabbing pains in the right ovary that shoots to my lower back down to my thighs into my feet. I unfortunately right now have no insurance and have not been to rhe doctor basically since I was diagnosed in April of 2012 with stage 5 endometriosis. I pray every single day that I will make it through and that I will start my cycle on a day that I am not working. I have yet to find a friend or boss that understands what I am going through and doesn’t blame it on “bad periods”. I now can come here and vent and hear stories from all of you strong women.
I emailed my mom a link to this blog and said “It is so nice to finally find something that is so on point with everything I am going through.” I have been suffering from Stage 4 endometriosis for 6 months now. I never had any symptoms or issues until one day while sitting at work, I had this sharp pain in my L side. After a few more days of cramping, I went to see my doctor. Within a matter of one week, I had 2 ultrasounds, was in with a specialist and then on the operating table. My 1st surgery required a unilateral salphingo oopherectomy as my ovary was the size of a small orange. For the next 3 months, I endured countless doctor’s visits, injections, medications, and netc only to be back on the operating table as the endo had spread into my appendix, colon, bladder. I am now on an IUD and hormone replacement therapy but as I sit here now, the constant tugging and burning pain is traveling in my abdomen, back and legs.
I try to troop through and suffer in silence as I find no one can understand. Even some females who have this disease have said “Oh I have it. It’s not that bad.” As females who all suffer, we need to support and understand that this affects us all differently and not compare, but uplift.
I can understand the frustrations of this terrible disease but I’m happy to listen to anyone who needs to vent and hopefully, provide a little relief!
I’m 27yrs old..i started coming on my period at 13..i use to get sick and experience really bad cramps..every month i would mis 2-3 days of school due to bad cramps..at the age of 23 i was diagnosed with endometriosis. . I also had fibroid cysts on my right ovary..in 2010 i had a cyst removed and the endometriosis scraped away..after that surgery i was put on the depot lupron shot for six months during that time i started to get extreme pelvic pain..from a ultrasound it was shown that i had another cyst on my right ovary. .so again i had surgery in March of 2012 .while on the operating table my gyn was able to remove a cyst the size of a gulf ball..also the endometriosis covered my right ovary it was unsavable. .so it was removed. .again i was put on the lupron..i’m still experiencing pelvic pain..i believe the endometriosis has returned and it scares me of what the outcome will be..i don’t have any kids..so this is waying heavy on me
Thank you for writing this, this highlights many of the symptoms which I am currently suffering with, but as of yet, no diagnosis of endometriosis. My gynae and gp seem convinced my problem is bowel related, but I am not convinced! Ultrasound was clear, physical exam was clear yet: I am still in pain all the time, constantly drained of energy, suffering headaches and am urinating way too often. A laproscopy has been recommended, but no action taken! I am delving into my symptoms trying to find my own answers, hopefully then I can go back to my doctors and get a confirmation or not.
Reblogged this on coffeeshopsandsunsets.
Update on the Lupron-
I started taking Lupron in July. It is now about to be December. I already want to be off of it. The endo pain has been reduced but I am not sure if that is because of the surgery that I got this past September or the Lupron. The birth control that I was on previously before the Lupron worked very well too, I was skipping the sugar pills and took a pill every day. I regret taking Lupron because as soon as I started taking it without the add back therapy I was noticing changes -hot flashes, reduced sexual interest, breasts were shrinking, i was getting headaches, i was always in a bad mood. The add back made the hot flashes go away but everything else still bothers me. I don’t feel like I am in control of my life nor do I feel like a normal 22 year old. My doctor wants me on this until I’m ready to have a baby which is a longg time away and I can’t even see myself on this for much longer. I don’t want to quit just yet because I just started it (itll be 6 months now) but I’m not seeing any huge improvements from being on the Lupron. Instead I am just depressed because my body is not the same and I don’t feel healthy. I go to the gym all the time, or used to. Now whenever I go I quickly get out of breath and my legs can’t even keep up. My knees will start to hurt and my legs will start to ache and even my toes. Its the same when I go to work out my arms, they just feel weak. I used to feel strong and would get endorphins when I worked out, but now I just feel exhausted and can barely make it through my workouts. I plan on making my doctor aware of this to see what else she can do to make this more tolerable. Its a little embarassing telling her my sexual desire has gone down the drain buts its true, who at 22 wants to feel this way? I don’t. Will keep whoever is interested updated.
One of my sisters suffered many years of extremely painful menustrations. An OB-GYN at WFUBMC performed laproscopy that found Stage 4 endometrosis. Normal recommendation for Stage 4 is complete hysterectomy. She did not want hysterectomy because still young enough to bear children. Ergo, OB-GYN prescribed 8 months of Danocrine (pill) to help loosen the thick scar tissue that endometriosis had encircled uterus, both ovaries, adjacent bowels, et al. After those 8 months on Danocrine, laser-laproscopic surgery removed ALL the endometrosis scar tissue. The uterus and one ovary was saved. [ So far, no children, but hopeful.]
OB-GYN told my sister that his OB-GYN laser research program proved that the reason standard (non-laser) endometriosis surgery does not prevent recurrence of endometriosis is because during standard endometriosis surgery the surgeon uses cutting tools that leave very small amounts of blood in the area. The small amounts of blood from the surgery that remain the in the uterine/ovary area contain the miscroscopic “seeds” to cause the recurrence of more endometriosis scar tissue.
So, if you want the endometriosis to be fully cured/stopped, you must find an OB-GYN surgeon who can remove ALL the endometriosis scar tissue with LASER SURGERY so as to not leave ANY traces of blood in the surgical area.
It’s been several years now since my sister’s endometriosis surgery, and she still reports that since that surgery she has NOT had one bad period — which is of course a MIRACLE to her! Before laser surgery, she told me she had a period every 17 days with 7-9 days of suffering. So basically, she was suffering often & A LOT!!! Now, since laser surgery, no suffering AT ALL. Her OB-GYN has since retired and returned back to his homeland in Lebanon. Else, I would get his name from my sister and give you info. on how to contact him.
One word of caution, my further (googling) research on the topic indicates that laser surgery CAN BE DANGEROUS in the wrong hands. You must find an OB-GYN laser surgeon who is qualified and expert at using the laser. Otherwise, laser in wrong hands, could cause significant damage and possible worsening of your situation.
So, if you find an OB-GYN laser surgeon, be certain to get patient references and references from his or her colleagues, and search Surgical/ Medical Licensing Boards that prosecute careless/negligent doctors. Just be wise before you opt for surgery of any kind, actually. My sister was very lucky to have found a superb OB-GYN laser surgeon.
I’m the father of an endo sufferer. My daughter is just about to turn 20 and has been through 4 surgeries and years of pain. She has suffered from bouts of depression but in spite of all of her suffering she does amazingly well and seems to be able to see the bright side of life and have a reasonable social life between the pain. Remarkably she has managed to get into medicine and is passing her exams in spite of the many days off. Thank god for video recordings, modern technology, a very gifted girl and an accommodating university. I just hope that she will be able to cope when she has to start on the wards. And I can’t help thinking that one day she will likely apply her talents to helping others who are suffering such an ugly yet common and frequently misunderstood disease.
It’s very very hard as a guy ( probably more truthfully as a non-sufferer, as I gather from the comments on this site that many women can’t relate to the pain ) to be able to relate. Her suffering appears so sporadic, to the extent that at times it seems unbelievable But reading this website has given me a far greater understanding of what she is going through, particularly the wonderfully articulated opening descriptions by Michelle, backed up by the many real life stories by so many sufferers.
I feel guilty for ever having questioned her, and I sense that this is part of what some of the writers are alluding to when they refer to the relationships with their families and friends being compromised. It just doesn’t seem fair.
She loves kids but is very aware that she may not be able to have them. I ponder her in pain and feel so helpless knowing there is nothing I can do to help and that there is no definitive path ahead. In fact it seems no real option for relief without significant side affects. And she is only 20. I have noted the herbal remedies and I will point them out to her, although I’m confident she has already considered these and if so I’ve got no chance of changing her thinking.
I’m so great full that she has the talent and determination to keep going with her studies and I feel for those of you who are less fortunate. This is a wonderful website and I’m very glad I’ve found it. Thanks Michelle and I hope that many more fathers, mothers, brothers, sisters, partners and friends of suffers take the time to read it.
My name is Emily and I am currently 18 years old. For a while now everytime I get my period I have an ungodly painful pain tht happens in my vagina. It is very hard to describe. It feels as though someone is stabbing me in my vagina and it shoots through me. I have to grip something so right in order to not scream from pain. It usually happens te first couple of days of my period. It has lasted from as long as four hours to 24 hours. The gynecologist told me it was just period pains and put me on birth control to help control it. Does anyone have any idea what this is? To go to the restroom or even get out of bed when these pains occur is impossible.
Hi Emily, sounds exactly like what I have been through for the last few years. Get a second opinion. That is what I am doing at the moment; if you think something is not right, ask questions and demand answers.
Hi Emily
I have this pain aswell and I have only just recently found out that these shooting pains sometimes in the rectal area up through the back sometimes when you sit on the loo is linked to endometriosos, these can also be caused when going for a number 2 around the first few days of your period. Be persistent with your doctor, I was fobbed off for 7 years until I was diagnosed with endometriosis and I have the exact same pains you describe the first two days of my period.
I have this same issue obviously that’s why I googled it lol. Dr says she doesn’t see anything wrong with my ovaries but the pain when it comes is excruciating. I too have to stop and grip whatever is close to not scream. I can not move when the pain comes. Bad thing is it’s random therefore I don’t know when it’s coming. It happened today at work and I was so embarrassed. How do you all determine when the pain is going to start?
I’ve had endo since around 20 and I’m now 33. I’ve had multiple surgeries and drug treatments over the years, and the only comment I would make to anyone else with the condition is to keep pushing for treatment. I got told so many times nothing was wrong, it wasn’t endo, it was in my head… You know when there is something wrong so don’t give up!
Hi. My name is Melissa. was just wondering what all surgeries you have had done? i am 39 now and have four kids. had surgery two years ago for a cyst on my right ovary and had an ablation done as well. my doctor found endo on the backside of my uterus while she was doing the surgery. she removed all she found and i felt amazing for a year! no back pain, it was great! i have not had a period for two years now either. i still have the pain and symptoms of being on a period. so anyways after a year i noticed the back pain slowly coming back, and after a year and three months it was horrible again! went back to doctor and she did not really act like she would do surgery again and put me on birth control. took it for three months and stopped, really did not notice a difference and do not like taking medicine. so i was just wondering if you have had more than one surgery to take out endo?
I have had 7 surgeries in 7 years for endo. I have had both alblation and exision by laparoscopy. Unfortunately the endo continues to grow and though the surgery definitely helps, I am always in pain again about a year later. I hate getting surgery every year but after trying birth control, diet, exercise, and pain meds, it’s the only thing that makes any difference for me. I haven’t had a period in 8 years (I’m on the IUD), which also hasn’t made any difference in the pain for me
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I am now 25 and was diagnosed with endemetriosis at the age of 23, I had and endoscopy operation to clear away all the necessary from this diagnoses….however 15 months down the line I am now back to where I was before my operation. Amongst the agonising pain and discomfort its mainly frustrating to know that endemetriosis isn’t something that can be permanantly cured! Unless you have a baby I’ve been told :-S
I was diagnosed with medium severity endometriosis about three years ago at 23 years old. I didn’t have heavy periods or many of the other symptoms, just a terrible burning and aching in my abdomen that came on quite quickly. I had a laparoscopy to remove the tissue, then went on the Zoely pill for three years on the recommendation of my (excellent) gynaecologist. After a few months, it COMPLETELY went away and has never come back. It certainly wasn’t an “uncurable” disease for me.
I hope it lasts. My relief was about 3 years, but it’s creeping back.
I was diagnosed and treated in 2009 and thought I was cured but it’s back with vengeance.
Hi Eve, may I know who your gynecologist is? I am actually looking for one who really knows what endometriosis is. I am suffering with acute pain on my lower abdomen, just above the groin, also in the area around the anus, a week before my period starts, and continues during the first days of my period. The pain is excruciating, I could hardly get out of bed. I’ve had several TVU , but doctors couldn’t see what’s wrong (though I have multiple fibroids as well, but still too small to be operated on). So I would appreciate it if I can consult with your gynecologist, to put light into my situation. All the symptoms I am suffering from all point to endometriosis, but I have yet to find a doctor to tell me that and find a cure or relief for this, once and for all. Thanks and regards!
Hey Rachel! I was told the same thing about having a baby being the only cure and I am living proof that’s not true. After being diagnosed and going through menopause with Lupron shots at age of 22 I had a child at 25 and now at age 29 I’m in the worst pain ever, im having a laparoscopic surgery on April 20th. It sucks but it seems there is no cure.
Not diagnosed yet but now that I’m in “perimenopause” (also not official diagnosed) my periods start and end with undulating pain in my lower right abdomen, not in the hip crease, but just above and to the left of it (as me, not as looking at me). Lately it doesn’t “bookend” my period closely. It starts early and stays late. Have a dr. appt first week of January.
Hard living with condition so painfull and have depression and limited enjoyment with walking with the pain
Bless u hun. Dont give up im the same. I feel crazy.n sometimes csnt bare the thort of living out my life this same way. 2 days ago i went to my hosital appointment about my bladder incontinounce to only be at the wrong hospital n also i .wanted a referal to my gyne but my doctors didnt refer me cps hes so thick he doesnt understand endometriosis effect boel bladder ect like it has me in my past. So anyway i walked into A&E even tho i wasnt in pain n i just refused to leave untill some1 refered me to my gyne n i was took into a room by a lady nurse/doctor working with the A&E that day to help any1 that doesnt really need to be in the A&E. It must of been faite becos she knew exsacly what i was going through bcos she had been a suffer too alot of yrs ago.she listened to my tummy n could hear my bowls were very over active thdn she phoned the best gyne doctor in my town that had dealt with her in the past n luckily i have a referal. Onwards n upwards for me n in tge future im never going to my any doctors again
Hi i have been living wth endo for 3 or 4 years i have tried many different birthcontrol and nothing.i have pain all the time day and night sometimes for weeks at a time.i am living in hell i am very active with 4 kids so having more is not a option.i just want to be able to go to work and not feel dead by the end of the 8 hrs.any sugesstions??
I have even been taking natural herbs to help
It was working but after a year it stoped.
And having surgery i cant take off the time from work to have surgery.i am loosing out on so much in life .
Birth control does not get rid of endo.. Surgery will. Birth control is used after surgery to stop periods altogether or make them lighter. Birth control itself does nothing to get rid of endo. Endo can stick your organs together and only a skilled surgeon can unstick it and cut out the endo. I know this because I tried birth control and it did nothing until after I had surgery and stopped getting my periods. The recovery is really only one week and all you need is a laparoscopy which is three barely seen incisions. Surgery was the best choice I ever made.
Surgery works… but only for the moment for some people. I had surgery in Dec 2013 and when I went back into surgery September 2014 (almost exactly 9 months later) it was worse than what it looked like the first time. I am still looking for something long-term to help me. My doctor put me on Lupron after my surgery but I was not on it long enough so it is back again. During the time I was on Lupron, it was not nearly as painful and i had no periods. The concern with Lurpon is that if you have an estrogen sensitivity, it will probably make you really sick before you start feeling better (it did for me). I wish the best for you and hope you can find relief soon!
Have you tried changing your eating. I got the endometriosis book about natural health & have cut out wheat/sugars/caffeine & it has helped me by leaps & bounds! I didn’t even know I was getting my period the past 2 months because I had no symptoms!!!! I’ve never not had pains/fatigue/nauseau when period time!!!
thank you for sharing, i have not been diagnosed yet and my first gyno app is in february… I’m freaking out a little bit, i found your description very closely describes what I’ve been going through, although i have been diagnosed with IBS and was told to deal with it until i found my current GP and he took me more seriously, I’ve always had persistent period pain but I’ve never considered it chronic before, i take pain killers occasionally but mostly i just deal… its my seemingly random dull aches and stabbing pains that have me concerned i will be diagnosed with endo soon, also i have bowel symptoms and my cramps are worse around bathroom times, does anyone else have this issue? also i was wondering how long it generally takes for a confirmed diagnosis? I’m dying to know if I’m going to be able to become a mother in the future, infertility is my biggest fear at the moment…
if anyone would like to share their experience with me i would really appreciate it 🙂
oh! and i forgot to mention the painful sex (sometimes but not always) i always have had a once in a blue moon type of deep pain during sex but it has become a lot more frequent the past month, and the back pain!! i don’t know if mine is all connected because i have not been diagnosed for sure but I’ve always had lower back pain for the past few years but it is almost all the time now, especially after standing up for a long time
does anyone else have these problems?
i can’t decide if i want to brush all of this off as IBS or if i should really be concerned!!
I’m always thinking I’ve over reacted because the pain disappears but then all of a sudden its back and not always in the same ways
Painful sex is a symptom of endometriosis. I would let your dr know. I found cutting wheat & other things have helped with my endometriosis symptoms but also I’ve read a lot about cutting wheat helps with IBS.
Hi in my opinion being a sufferer myself chronically since the age of 10 now 29 yrs old your bowl may well be stuck to your ovary or even another organ. Iv been neglected time after time being told it’s ibs stress pains ect. To only end up at age 20 having an op n they found p.i.d, endometriosis, abnormal cervical cells that had to be burnt off court in time. Ovary stuck to bowl. Something wrong with bladder and Fallopian tubes stuck to my pelvis. That while removing my breathing wasn’t going so well so they clipped my tubes instead of removing and I led to have ivf. That I found even more sad news that my ovarys were dying pre mature ovary failer. But my story end with an ivf succes of a beautiful daughter 🙂 but now I’m back to scare 1 and my doctor is so thick he’s not refered me to my gyne he’s just been sending me for bowl camara n bladder scans ect so ill just end up going into the a.n.e n get a fast track referral to the gyne
Also forgot to mention oval ring cyst they found they juring my ivf I grew a 6cm cyst on 1 ovary n a fibroid somewhere n it’s as if as soon as I became pregnant all was forgotten about.
Hey! Yes I totally understand!! I have horrible pains 24/7 and when it comes to bowel movements it hurts so bad!! The only way to diagnose endometriosis is with laparoscopic surgery where the dr will go in a look and if dr sees endometriosis they will remove what they can. I had my first laparoscopic surgery diagnosing me at 21, went through hormone (Lupron) treatments and was told I couldn’t have kids but don’t let that scare you because I had a beautiful baby boy at age 25 and at age 29 am in the worst pain of my life and am headed into laparoscopic surgery in a couple weeks. Stay positive!!
Ibs wouldn’t really cause pain during sex in my opinion. I was diagnosed with Ibs but the pain still continued after that diagnosis. Your gyno may try to dismiss you because most gynos don’t know how to treat endo or even diagnose it. They usually look for “heavy periods and bad cramps” as a sign that you may have it which didn’t apply to me at all, and yet I still have endo. If this has been going on for a while, it wouldn’t hurt to get a laparoscopy to figure out what’s going on. Trust me, I’m mad I waited. I was bossed around by doctors and turned away for a few years before I couldn’t take it anymore. Infertility may be affected but find a good doctor who can take out the endo and keep it from coming back and you should be okay. My doctor actually shot blue dye through my Fallopian tubes or whatever and said that that was a good sign.. So don’t get upset about that until you truly know you can’t have kids.
Endomtriosis is so complicated. I have it. Iv also had adult colic.witch is pain full. I knw alot of people suffering with bowl bladder ect problems that have all turned out to endometriosis causing ther pain. And in most cases by the time they realise whats wrong, infertility is ther next problem. Dont give up. Speak out, shout if u have too.i wish everyone a pain free life.
I have had the lap done almost 2 years ago and have been pain free until the last month, the constant Pelvic/Lower Ab pain is back! I am on meds to treat a possible infection, but still in constant pain. I have been referred back to the Gyno doc and am awaiting my appt. I just want to cry all day every day!
I feel you Jo. I started to cry the other night in bed because it felt like I had a hot poker jabbing me in my right ovary and back. I am SO over it and I just had surgery on December 19. I thought I would have some relief. It has been so long since i have had more than a few days pain free in the last year. I don’t know how I would react to being pain free. I guess cry tears of joy and pray that it lasts…..
I have dealt with endometriosis and fibroids since I was about 20 and I’m now 33. I had an ovary removed at 22 and after the surgery i saw multiple doctors because I had terrible pain afterwards. They all acted as if I was crazy, I did my own research and diagnosed myself as having endometriosis. 2 years later I had to have a fibroid removed from my cervix, I was told I would never have a child through natural birth. I decided to have a child and got pregnant after only 1 month of trying, my daughter was delivered via c-section. After my c-section a lump started to form in my stomach, the lump was slowly getting bigger and was really painful during my period. Finally after all this time I was diagnosed as having endometriosis, but the bad news was during my c-section some of the scar tissue moved into my stomach and settled in the muscle area so another surgery to have the tissue removed. 3 years later and the pain is as worse as ever but I now have so much scar tissue that another surgery won’t help me. Constant pain has been the story of my life and now I just pray that my daughter will never have to deal with this.
I have a lump near my C-section scar, too! I have endo and had surgery twice many years ago. Now 34, I’ve had this lump growing and the doctors are “watching” it. I am going to see a different doctor to see what we can do. The paid used to happen monthly but now its becoming continuous… Its hard to deal with…
I feel for you iv got loads wrong n just wish my daughter didn’t have to see me in the pain 🙁
Hello All,
I am a new poster to this community and am so glad I found it! I’m 34 and just had my second surgery for fibroids. I had an open myomactomy over two years and the doctor couldn’t remove all of the fibroids. However, I began to have very painful periods again in the beginning of 2014. They would be so bad that I would take days of from work and lay in the fetal position. I found another doctor who had high ratings but she was just a regular in and I don’t believe she had much experience with fibroids. So after having multiple ultrasounds she still felt like it was just “regular” period pains and put me on birth control. My body does NOT do well on bc. I truly believe the hormones or whatever is in it makes my fibroids and periods worse. Anyway, I felt like she was not taking my concerns seriously so I found a fibroid specialist at GW. After the first visit, he confirmed not only go I have multiple fibroids, but also possibly endometriosis. No doctor ever mentioned that before. Long story short, I had a laparoscopic myomactomy in December. He said my case was one if the worst he ever saw. In fact he used the words “atomic bomb”. Not only did he gave to remove numbers of fibroids, but my bladder was twisted and connected to other organs and was above my belly button! He also had to remove endometriosis from my right ovary. I kept telling my old doctor how much pain I had on the right side too. Anyway, after surgery he put me in bc, which of course screwed me over but I stopped taking it yesterday. Bad news is after I started taking bc I had all the symptoms of a period but no period. My right side is killing me again and the hip pain hurts like hell. I pray after all the bc is out if my system, things will be better.
My mother was diagnosed with endo in her early 30’s. She had a total hysterectomy at 35. I’ve always had painful, heavy periods since I first started having them. The pain has just gotten worse and evolved as I got older. I’m 31 now.
I’ve taken birth control on and off for years to help ease the pain. Ibuprofen is my OTC pain med of choice since it deals with the inflammation along with the pain. I can’t find a doctor that will diagnose me with endo no matter what I do.
A year ago I developed several DVTs (blood clots) in my right leg and PEs (Pulmonary Embolism) in my lungs. I was very close to death by the time I went to the hospital, but I didn’t know it at the time. I had been told for so many years that the pain I felt from my periods was normal, so when I started feeling pain in my leg, I figured it was just muscle pain and didn’t think much of it. The pain I feel during my periods is much worse than the pain I had it my leg at first, so I had no reason to think there was something wrong. Not until the pain crept up my leg and it felt like my hip was out of place. I couldn’t walk very well. My leg was also swelling. I was also losing my breath easier than normal. Of course, I just told myself I was out of shape. When I got the chest pain from the saddle clot that thankfully broke in half when it got to my lungs, I just explained that away as being brought on by anxiety because I was getting married and was nervous.
3 days after my wedding, I decided I should go to urgent care because I wasn’t able to walk but a few steps at a time. They sent me straight to the hospital. Coincidentally, it was the same hospital I worked at. The ED doctor came in and said, “You work here, right?” I said, “Yes, in Transfusion Services.” He said, “You work in a hospital, been dealing with horrible pain for over a month now and you waited until now to get checked out?” He wasn’t saying anything in a mean way, more of a joking tone. So, I said back, “When I don’t take birth control and even sometimes when I do, I am in such severe pain during my period and anytime I went to the doctor or ED about it, I get told that it’s nothing and I’m wasting their time. Maybe, I waited so long to come because I was waiting for the pain to become worse that my period pain, so that I wouldn’t be called a whimp and to suck it up.” His response to that was that I must have really painful periods because my entire right leg was full of blood clots and the clots in my lungs caused one of my lungs to partially collapse. It also caused several infarctions in that lung as well, which did hurt pretty bad.
The worst part of the whole experience is that I was on birth control when I got the clots and even though I was diagnosed with Lupus Anticoagulant, I can’t take hormone birth control any more. I can’t even go on hormone therapy if I ever have a hysterectomy or start menopause. I’m also on blood thinners for life because I was diagnosed with a new very large PE in my left lung last month. Being on blood thinners means I can’t take NSAIDs, so no more Ibuprofen. I am on prescription pain meds, but they don’t do much for my period pain at all. Luckily, I was recently told by my hematologist that as long as I’m careful and don’t take too much that I can take ibuprofen when the pain is unbearable. I had to do just that just a little while ago.
The pain was so bad. It felt like I was being stabbed by a long, thin knife, in the middle, right above my groin. I imagined the knife going in slowly and then once it had gone all the way to my back, the knife started twisting. At the same time, it felt like there was a long needle being pushed in the same place as the knife, but pointed more upward and piercing my bladder over and over. It was so intense that pain was shooting down my legs and my entire body was shaking, even though I was sweating. Once the pain started to subside, my body was able to relax. It still hurts, but it’s bearable, for now.
I have figured out a pattern with my pain and it depends on which side I ovulate on that month. When I ovulate on my right side, I get the pain I just described above. When I ovulate on my left side, my left ovary swells and is quite painful. It also causes pain in my back and down my left leg. I also get really bad pain in my neck and right shoulder almost where it connects to my neck. My joints in my hands and fingers also hurt.
I don’t know why the pain is so different when I ovulate on my left side. It’s more of a achey soreness kind of pain that lingers and drains all my energy. When I ovulate on my right side it’s a shrap stabbing pain that comes in waves and intensifies with each wave and there’s not much relief in between at all. It also drains my energy and leaves me exhausted.
I really wish to find a doctor that will listen to me about this. I want a hysterectomy. Now that I’m at a much higher right of dying from a blood clot to my heart, lung or brain after surgery, it’s now going to be so much harder to find a doctor willing to operate on me. I can’t live the rest of my life dealing with this debilitating pain every month. I’ve already been dealing with this for so many years. My teenage daughter doesn’t need to see her mother curled up in a ball crying because the pain is so bad. Living with this is a nightmare. If I didn’t have the people I love around me, I would swear I was in hell!
My name is Mary and I have been going through abdominal pain for several years now. I first was diagnosed with ovarian cysts. The gyno I saw at the time said that the cysts wouldn’t necessarily cause any pain, that he had a patient in the past who had had one the size of the grapefruit, and she had no pain. That left me thinking…ok then what is the cause?? Fast forward a few years…there was a time when my abdominal pain was so bad I went to the emergency room…again nothing diagnosed. I was having horrible pain with some bleeding. New and improved gyno found I had a large fibroid just inside my cervix, which was removed. I started to have hot flashes…I was in my early 40s…stopped having my periods. Thought I was peri menopausal, but when the blood tests came back…the results showed post menopausal. I went a year with no periods. He has been keeping an eye on my ovarian cysts…I have had several internal ultrasounds. They said my ovaries were kissing…i.e. touching each other. He also said he saw endometrium within them. Now I have had bleeding again after being diagnosed as post menopausal. Diagnosis finally given as endometriosis. My Mom was also diagnosed with endo and had a total hysterectomy when she was in her 50s. I am now 46. I have had days where I feel completely exhausted. I have severe pain some days in my abdomen…but also in my right hip. I also have had lower back pain. The other pain more recently is with my sciatic nerve pain…like a literal pain in my butt…on the right side, that sometimes goes down my leg. This has been bothering me more recently due to all the driving I’ve been doing to take my husband to all his therapy/treatment appointments. (He was just diagnosed on Christmas Eve with brain cancer). I came to this site…I started crying as I was reading some of the posts…because I’m starting to realize…all my different pains throughout the years …they’re all interconnected. I’m not crazy.
Hi im shai-ane im 18 years old.
I have been having cronich stomach pains also in my hips and where my overys and tubes are also just below my belly button. I’ve had them for about four years on and off. The only way I can describe the pain is it feels like my insides are tearing the only way to numb the pain Is by putting pressure on where it hurts. Ive been to the doctors and hospital had scans and everything has come back normal. I feel like no one wants to help me as they dont understand what’s wrong with my body. I get woken up by the pains that im experiencing. Lately its been every day. The pains have no relation to each other. Ive been trying to look into all the pains and I can’t seem to find that relates to them. im starting to get worried as it’s getting worse. Feel like no one can relate.
I Have been having symptoms since my second C-section and tubal ligation in 2001. Varying in severity over the years. Severe enough at some times that I ended up in the ER once because of the pain. I have had an ultrasound which of course was fine. Was told several times that It is IBS. Another Dr. Mentioned endometriosis but said it wasn’t bad enough to do any follow up because I hadn’t missed work because of it. Had to laugh at that. Pain doesn’t stop me from doing my job. I Would have tried going to work with a “broken” bone that required surgery if I hadn’t been talked in to going to the hospital to have it checked out the day before. I have gained a lot of weight over the years and started a diet . (A sensible one watching calories and trying to eat healthy and exercise) and I have lost a decent amount of weight. But I am noticing an increase in my symptoms. Has anyone else experienced this? At first I thought maybe the exercise, but haven’t done any for probably 2 weeks now and symptoms continue to worsen. Just wondering if there could be a connection or if it’s a coincidence or something else unrelated.
I find these posts so helpful as I’ve been living with the disease since I first ovulated at 11 and am now 53. I don’t feel so “alone.” When I was 11, I began with these extremely painful ovulations, I said something to my parents and my father replied: :shut up and go to bed.” Obviously he thought I was just being whiny. I honestly thought my Appendix were bursting, and I would be dead by morning, that would sure show them! I have been peri-menopausal since 37, diagnosed with Endometriotis when I was 19.
These last few years of peri-menopause I have been in pretty much a constant state of pain or discomfort, right now I’ve got the pain shooting down from the abdomen to my lower thigh.
There are many causes of abdominal pain and it is actually important that your medical doctor determines what is the main cause. It can range from Endometriosis,Stomach virus and other conditions. usually, pain medications can ease the pain
Hi,
Has anyone here tried Endovan? I’ve ordered it after trawling through forums and emailing them back and forth a few times and hopefully will let everyone know how I feel and if it helps. It seems almost too good to be true, but I’m only 23 and not interested in any surgical procedures and very against pumping additional hormones into my body. This is totally herbal and the only things that seriously convinced me to give it a to was they they have a money back guarantee. It’s quite pricey but you can’t put a price on health right?
You will have to let us know how it works for you please! I’m interested in trying something more natural. I’ve heard of it but turned away from it mostly because I thought “there’s no way you take pills to just make it stop.” I’ve had two laparoscopies and am now on Lupron but Lupron sucks for than anything. Don’t take it for anyone reading. The side effects are not worth it and it has not improved how I’ve felt. My doctor claims it’s the only thing that shrinks the lesions and endo. But again, I’m the patient and I’ve had very uncomfortable side effects that I cannot deal with anymore. So please keep us updated & let us know if it works for you! 🙂
Hello I am 20 years old and this is the first time I hear about endo. I don’t know if that’s what I have but my periods are very painful and the leg pain is just unbearable. It feels like something is dragging the insides of thighs. It’s usally always my right leg. My period is also usually heavy I change pads a lot during the day. I have always had painful periods but I thought it was normal. Should I see a doctor?
Yes, the earlier the better. Pain is nothing to mess around with, especially endo. It wouldn’t hurt to get checked out but you really should explain your symptoms and say you are concerned It is endo. I’ve been turned away from gynos for the longest time even though I have endo. Not many of them understand it nor look for it so make sure you bring up your concerns.
I am not really sure if the pain I am going through is because of endometriosis. I am yet to get it diagnosed by my gynae. I am 27 and feeling periods like cramps from almost a week while period for this month is not due so early. I had very painful and dreadful during initial phase but since 1 year pain is becoming bearable and I never experienced irregularity, they are always on time like 27-28 days of monthly cycle.
But now, it’s been a week, I feel severe pain in my left lower abdomen, pain rushes to back and down to left leg. Experiencing mood swings, not feeling like to go anywhere, and today I realized some tough stone like stuff on the left side of the abdomen.
Not sure what this problem is.
I was distressed when I read this page of all these women suffering. I have had endo and surgery and it is relieved. What is being discussed here is not endo but Pelvic Congestion syndrome!!! I know because I have it now. Get to a vascular surgeon not a gyn and not a general surgeon but vascular!!!!!
I am praying for healing for all of us. And don’t give up and let some male doctor say oh it’s a woman thing probably endo. ( I so hate that attitude) I am praying for all of us! If you do have endo have laparoscopic surgery and be done with it. You can also have ablation (burning out the lining) if your not going to have kids any more. You have options!!! Don’t give up!!!! You are valuable, important and beautiful! Believe it and take care of yourself, your all you’ve got.
I’m 46 years old. I have had painful periods since the very first one. I remember telling my mom during my first period that I wanted a hysterectomy. In 2012 I had a partial hysterectomy due to fibroids. My periods were so heavy and painful that I was severely anemic. My surgery was laproscopic. I never thought to ask my OBGYN if he found any endo while he was doing my surgery. About 10 months later I started having severe cramping every month and pain on my left side that felt like my ovary was in a vice. The pain is in my back and goes down my leg. It literally lays me out for a couple of days. I also have pain when having a bowel movement and constipation. Then a few months later I developed a large lump above my scar. Hernia was ruled out. Turns out it is a large mass of endo between my belly fat and muscle. Every month this lumb feels like an open wound, it is so painful. I also continue with the internal pain, the shooting nerve pain inside, ovary pain, low back pain which radiates into my leg. I have seen a general surgeon who agrees that the lumb is likely endo. He wants to remove and biopsy. My OBGYN will also be present to do the scope to find and remove any other lesions found internally.
Have any of you had recurring endo after a hysterectomy. I have both of my ovaries and want to keep them. I don’t want to be thrown into menopause. I just want this pain to be gone. I thought that after i removed my uterus I would be done with all of this.
very informative article. the few years that i have had endo have been terrible. there are more myths sorrounding the condition than facts. i hae learnt through experience that no pain kiler or hormone therapy will ever help. they are very temporary and will only worsen the condition in future. get to the net and google alternative herbal remedies.
I have been wondering for yrs if I was just crazy lol. I was always going to the ER all the time for really bad pain in my ovaries and back pain. I am pregnant right now so I can’t get checked for endo. Before I got pregnant my Obgyn checked my ovaries cause they were killing me so bad . she said after I’m done having kids I will prob need to have a historectomy but I’m only 25. So my question is should I get checked for endo first?
And also I have really heavy periods and a lot of cramping and way bad pain with my periods. I also have tons of migraines
My pain usually starts about 2-3 days before my menstrual cycle and then last about a week or so after my cycle. Only on my right side directly between by belly button and csection scar and it feels like a burning, pulling sensation. Im fine when im sitting but going from a sitting to standing position hurts horribly. It also hurts when my pants rest on that area. Does this sound like endo to you all?
So I have had the following going on for the last few years:
– Really bad back pain the first few days of my period (every period)
– Pain that radiates down to my legs
– Sometimes an urge to urinate
– Sometimes constipated
– And just a feeling of pressure down in my pelvic area
-Retaining water – swelling is mostly in my legs and ankles
My OB just suggested surgery. I was kind surprised, he was so quick to suggest it. (Probably because I told him we wanted to try to have kids this year after our wedding.) I was shocked when he said surgery, so there was a lot I didn’t get to ask him.
Does anyone else get the above symptoms?
Hi Everyone,
Excuse me if I ramble but I had my laproscopy yesterday and have been up until 3am worrying.
The consultant came to see me after the procedure and explained that I’ve got a significant amount if endometriosis. He showed me some photos of it but they made no sense and said that it has attached to both sides of my bowel, my bladder, pouch of douglas and there’s a small amount in my pelvis.
He told me I’d need to have a bowel scan to see if it has gone into the bowel (the waiting list is 3 months for this) and following the bowel scan I will need a 4-5 hour operation to try and remove the endometriosis.
My head is full of all sorts of worries and what if I need to have a colostomy bag because of it being on the bowel as well as the hard times ahead.
I’d set myself up to think that they wouldn’t even find any endo and if they did it would be removed yesterday. Now I’m no better off but have to worry about more surgery in the near future. My mum is worrying about me too but she said that when I reach menopause I’ll be ok. Is this true? I’m only 31 now and menopause seems a long time away…
Has anyone been affected by endo in their bowel and how did you get on?
There was a nurse lady there who gave me her mobile number to text her with any worries but is there anything I should be asking her?
Any advice is truly welcomed and I hope to hear from you soon.
Take care,
Beth x
That is really unfortunate that they only diagnosed you during laparoscopy and weren’t prepared to treat it and get it out. Who did your surgery? As in what type of doctor? My doctor was a gyno and infertility specialist (she deals with endo because most of her patients can’t get pregnant) and both were able to diagnose and cut it out. Also, there was endo on my bowels or sticking to my bowels. Yeah menopause may help, hence why I’m on the drug Lupron which puts your body in menopause. The pain is much more tolerable and better however the side effects truly suck.
I had the same thing happen. My laparoscopy was 6 weeks ago for a cyst removal. I asked if they found endo if they would remove it and she assured me they would. They found it and it’s widespread but removed none of it. Did your lymph nodes swell at all after your surgery? Mine are still swilled in my groin and armpits. I’m following up with that but was wondering if anyone else had that experience. I’m going to try to do some natural remedies. I will keep you posted.
I was diagnosed with endometriosis when I was 26 I am now 29. I went in countless times to the doctors office after having many ultrasounds done and each one showing signs of multiple cyst ruptures my doctor had finally come to the conclusion that I had endometriosis. We tried every birth control pill but each one made me worse so we tried the depo provera it worked for a little while but like the others it had stopped, we then decided after 9 months of failed attempts to do the laparoscopy. When I had woken from surgery she had told me that I was one of the worst cases she had seen, my endometriosis had spread up to my ribcage and had also attached itself to my stomach and ovaries. After removing the lesions they noticed my stomach and uterus had also been attached to each other I was told that everything had been removed and seperated and that the pain should now go away and that if it did come back it would take about a year. A month after the surgery the pain was back and was getting worse each month we then decided to try the lupron shot which I personally would not recommend as it had intensified my pain and just made me feel like I was hit by a bus constantly. I am now on pain management until we decide on which route would be best for me surgically but even with the pain meds I am constantly in pain from the time I wake up until the time I go to bed. I find it comforting to know that there are others out there that know how excruciating this pain is, there is pretty much no one around me that understands the pain I’m in and sometimes I just want to snap!!
I have been told by doctors that I have endometriosis, but never had the biopsy to be “officially” diagnosed. The doctors have said I have all the symptoms that mirror this horrid disease. My periods are awful and I cramp almost every single day no matter what. The pain radiates from the front to back or back to front, and it ALWAYS goes down my legs. I have been on both the birth control pill and shot, and was told it would help take away the pain. Birth control only made it worse, plus it made me feel like I was pregnant. I have been told the only way to escape this nightmare is to get a hysterectomy. If anyone has advice on how to manage the pain I would love to know what it is. Thanks!
Here is my Endovan update:
I wanted to give it a good go before I posted.
My verdict is please please try it, you have nothing at all to lose and I can’t stress how heart breaking it is to hear everyone’s stories and to know that someone else is having to suffer that level -or even worse- amount of pain.
I know you don’t know me personally and it makes you skeptical and I have to admit I was the most skeptical person, even emailing them to ask why most of their reviews were on their webpage and why they weren’t more recognised, but please from one sufferer to another, for your own sanity and to be in control of your life give it a shot. I’m not even one to post things online but I know that if you’re reading this, it’s because you’ve suffered and you’ve had enough and are just looking for answers, for someone to just understand or even for some comfort.
I will keep you all in my prayers. May God give you all a speedy recovery and strength to overcome this.
I’ve been taking it for a few weeks, here’s what I found;
-The killer pain I had in my right ovary area usually meant that my whole leg was in pain, I noticed in the first week that the leg pain started decreasing almost immediately.
-in the second week I noticed that the pressure I always had on my hip was decreasing
-I felt more energetic and I would usually have to crash out in the afternoon for a few hours because I felt lethargic, and it didn’t feel the overwhelming need
-I used to always feel like I needed to use the bathroom because of pressure in the pelvic area, and although I still need to go because I’m drinking a lot of water, the pressure isn’t there anymore
-I had nausea in the first week, not sure if it was a symptom of severe endo pain as I usually do or because of the capsules
-in the third week, this is my first time coming on my periods after taking endovan and excuse the info but for the first time in years I don’t have clots which I had always thought as normal and imagined everyone got it
-I also didn’t break out as I usually do which makes me wonder if endovan is cleaning my system or that breakouts are because of endo
-for the first time in a while I didn’t have that severe pain on the first day where I can not even stand and am reduced to tears despite having an extremely high pain threshold
-headaches have almost stopped
-back pains considerably decreased
-as of yesterday I noticed that I hadn’t been bloating much for this time of the month and overall bloating is starting to go down.
I hope that’s thorough, please give it a shot. Ask me any questions if you have them and even if you’re like me and haven’t been diagnosed officially then give it a shot. It’s all herbal, there’s nothing to lose. And please my advice would be to try and stay off the drugs and hormones, they really mess up your system and wreak havoc internally.
Take care,
Sincerely
Humaira
Having kids does not cure endo.
Post partum seven months and another endo nightmare.
Diagnosed at 19 with superficial endo I had laparoscopy and ablation with hrt therapy for three years. Medroxyprogesterone or depo tablets 10mg × 3 times a day.
First child 2003, various complications.
Second child 2008, surgeries and awful issues with endo.
Third child August 2014 chronic endo whilst pregnant, retained products, more surgery post six weeks.
7 months on it’s been primolut hrt all my hair fell out in a short period of time and isn’t better yet only worse.
Fourth period post hrt and not a candidate for further surgery as a risk of bleeding complications like birth and post birth outweigh the necessity to conduct surgery. Had more than two medical opinions from specialists.
It’s put up with it, no more hrt or pills.
I can’t even get my tubes tied because of risks. (Lost to much blood during c section and post rpoc correction and ablation surgeries.
Knowing that staph infection has to be identified before classification of endo.
Chronic endo has disruptive consequences. But after googling endometriosis pain and stumbling on this thread it makes more sense now.
Hot poker stabs to the abdominal region, sciatica and hip issues, leg cramps, kidney and back pain. The intense feeling like someone is playing marionette with fishing line all over my abdomen, twinging and pulling.
That’s every other day when I exercise, strenuous activities or deal with a bouncing crawling seven month old.
It’s strangling my rationale about pain threshold and knowing it’s as gamble of good days and bad days.
I am 31 and hv been having surgery to blow and burn my uterus since I was 13. I currently hv no insurance and endometriosis is back from three years of no surgery angry as hell ! What do I do?
It’s always comforting to hear testimonials from fellow sufferers. I’ve found doctors and people who don’t have Endo cannot grasp the suffering and impact this has on your life. Painful ovulation that doubles you over, radiating leg and thigh pain, cramping that puts you in a fetal position for hours, chills, nausea. No one understands why you can’t go shopping because you flood so much you are chained to a restroom. Wearing the thickest pads with tampons that have to be changed every hour. Egg size blood clots that fall out when you stand up, sleeping with bath towels under you,having anemia. I welcomed the hysterectomy I got at age 50 only after going through 82 pads and tampons in one weekend, sometimes soaking through every 15 minutes. They found Endo, scarring, adhesions, congested fallopian tubes, fibroids. I found freedom when I had a hysterectomy.
I’m 29 and have been dealing with my endo pain for years. I’ve had 2 surgeries over the past five years. The most recent my left ovary was attached itself to my intestines from the scar tissue. Since the most recent surgery I have been in daily pain and was referred to a pain management doctor. I found a birthcontrol that keeps me from bleeding the goal is for me not to have my period so no more cyst grow. I’ve been seeing my pain management doctor for a year now and we are trying to find what works best for me. Even when taking 4 Narcos a day it just dulls the pain only for a short time. I can’t sit for longer than 30min or stand longer than 30 without a spike in my pain. I can’t go out and have to cancel plans with my friends all the time. My life is work, home then heating pad.
Your article had me in tears because you were able to put into words exactly how I have been feeling since my first laparoscopy for Endo 10 years ago. I had hoped it would go away after my hysterectomy 12 weeks ago but the fatigue has returned with a vengeance. All I can do is make the most of the good days.
My name is mika and I have had this illness since I was 13, my very first period was when I was tested and only because I was sent to the er from a local park in an ambulance. My parents told me I was just faking it, even with the doctors saying oh no she does have it until my mother recently was diagnosed with it. She apologized after she was treated and told me she wished there was something she could do to help me. I have what the doctors call “stage 4” and I’ve been deemed basically infertal. The chances of me getting pregnant is like 1 in 893. Anyway it’s a pain every place of employment I have to tell them that once a month I am bed ridden for 2-3 days which usually causes me to lose my job or never get the job.
The pain is the worst part, feels like I am paralyzed from the waste down but I can feel the pain. What sucks more is having my husband have to watch me turn and toss, roll in a hot bath for hours, or fetal position on the floor/couch/or bed.
I am turning 26 this year and with the odds against me having children it has come to my attention that the only person I will have is my husband and friends until the day I die. And the scariest part about that is what if they all go first?
More needs to be done about this because it doesn’t have the attention it should have. Millions of women have it I know that doesn’t seem like much world but we fiddle over things for much less.
Hi everyone I was diagnosed with PCOS (Right) teenage years. Im am now 30. I have had irregular period since then that I got used to it I just used a baby diaper that can hold my bleeding (probably 3 of it in a day) with big clots and Im much comfortable when moving. Sometimes my period would last for more than a month or so. But because of my profuse bleeding I had 2x dilatation and curetage and had 1 blood transfusion. My period before wasnt painful its just uncomfortable but recently year 2012 I experienced pain a sharp stabbing pain in my bottom like somewhere in my bum or my tail bone or my perineum its just hard to know where about is the pain but its really painful that I cant even sit, stand or lay properly. They were times that I cant walk because my leg where numb (Limping). Its annoying because the pain stay for more than a month. On and off pain. Been to a gyne gave pain killer I had scans like every week but didnt even help at all. 2013 I had my hysteroscopy done polyps found but nothing to worry about according to doctor. 2013 had my colonscopy they all think it might be just an IBS but its all normal. I jave changed my gyne by the way.
Year 2014 of Dec I decided to go back home (Philippines) to seek treatment they scanned me again and to my surprised I am now diagnosed with PCOS left and right. I had my smear done as well no cancer only to tell me that I have cervicitis. Doctors in Philippines gave me pills and metformin to control my bleeding. Came back from holiday with my pills and metformin last Jan 2015.
In Feb 2015 I have been to A&E twice the first visit they gave me pain killer still nothing for them to do just take the pain away. After 4 days the pain is still there and its even worse even the pain killer didnt help and because I was shivering the day before and nausea even though Ive already stopped taking metformin, we went back A&E and was confined for 4 days. They scanned me and they saw like a fluid like sac they told me that it might be a cyst that ruptured that causes my pain. I had course of antibiotic and pain killer while I was admitted and even when I got discharged I still continue to have that course of antibiotic. Up until now I havent been to work because of this annoying pain that I even cant explain what the h*ll is really happening to me. Doctors keep on telling me nothing to worry about might be infection *sigh* . I have my appointment this 24 of March I hope I can get a proper answer.
Ladies,
What are we doing after we are diagnosed with endo? I would really like to know all the options out there. I’ve had 2 laparoscopies which have been great and have done birth control which worked pretty well but Lupron has been awful for me and I want off immediately. I am trying zoladex now which won’t be intramuscular which is supposed to be not as severe considering the lupron side effects have been awful. My doctor told me to take my last shot which will last 3 weeks but I’m being kinda stubborn and don’t want to take it because I hate Lupron that much.. I really can’t fanthom being on it anymore. My immune system is awful, headaches are an everyday thing, my mind is foggy and my energy is super low. I hope my period doesn’t come right away if I decide not to take this last shot and wait for the zoladex to come in. I’m not sure when my period is supposed to return. Please let me know how you are feeling after your treatments and what you are doing!! Thanks!
I’ve just been diagnosed having suffered for a good few years, whilst I was already taking birth control pills which thankfully helped keep things ‘at bay’. Had a laparoscopy purely for diagnosis and found pretty widespread endometriosis: bladder, ovaries, uterus etc. Started my first course of zoladex last week; no real side effects so far (apart from some headaches and burning pains) so I hope it will be effective and hopefully reasonably hassle-free for you.
If you don’t mind me asking who is helping you with your endo? A specialist, or gyno? Also, did this person tell you birth control was bad for your endo? I’m just curious because I read so much and have been told that bc and estrogen is bad for endo but then you see that it’s used for endo and personally being on it, I felt fine.
Hi Paige my doc is a gynae No was never told bc is bad for endo in fact the opposite however I initially started using bc as I was suffering quite painful periods which was probably the beginning of endo.. Though I’ve heard bc don’t always work for everyone so I think that might have been the case for me. Bc is a very effective treatment for dome but the longer I was on bc the worse my pain seemed to become.
Reblogged this on Invisible Pain Warriors and commented:
This is a great post! Such an accurate and very relatable explanation of this disease and how it feels to live with it. 💞
I need help….I was told when.I was about 18 that there was a possibility I had endo… bc mu periods where so painful and heavy….I have had three children since and had my tubes tied….I am now dealing with very painful periods again…..so bad im curled up in pain begging my fiance to massage my pelvic area…. the pain is going into my left hip and down the side of my leg….also a couple days before my period I will have low back pain and pain in my rectum….when I have a bowl movement or even sometimes sitting hurts….I was diagnosed with pelvic inflammatory disease at one point…. but now the pain is changing….. help me please has anyone fully diagnosed with endo dealt with this????
Hi im nicole. Ive been suffering with what was recently diagnosed as endometriosis. 2 years I was pushed away “its just a cyst, cramps are normal” finally I was sent to see a specialist and 2 years later im 1 week away from having a laparoscopy. I have severe pain almost 3 weeks of each month. Painful sex I cant get out of bed easily and I fall to the ground in crippling pain. I wouldnt wish this disease on anyone.
For the last 4-5 months I’ve had an extremely painful period, the pain would typically start two or so weeks before I started, and last a couple days after ending (I’ve never had painful periods before, so this is all new). The last two months I have had constant pain (before, during, and after my period) on my lower left side; I can only describe it as someone pulling, twisting, squeezing, and a stabbing pain constantly, some days are more painful than others. The pain got so bad I finally went to the doctor, they did x-Rays, as well as both abdominal and vaginal ultrasounds; I was told there were two cysts on my left ovary, and that they wouldn’t be causing my pain and were nothing to really be concerned about. I returned to the doctor about a week later still suffering from the constant pain, which happened to be getting worse. I started to get a pain shooting up and down my leg (it feels like someone is taking a saw from my lower left side down to my knee, then around to my lower back), headaches often turning into migraines accompany this daily pain; my doctor referred me to an OB which I went and saw today. The OB basically blew me off, didn’t listen to a word I said when describing my pain and how I had been feeling. She didn’t even do a pelvic exam; her nurse performed a quick two minute (if that) vaginal ultrasound, she assured me my “lady parts” were fine and in a few week my cramping would go away. I was baffled at how little she cared! Clearly if she were listening to me she would know my “cramping” is constant pain, which often gets so bad I double over, I walked out of that doctors office in tears; something is wrong, being in pain for almost two straight months is obviously not normal. I guess the reason I am writing on here is because I feel (unfortunately) I might be suffering from endometriosis; I’m not to sure where to go from here. Does what I’m describing sound relatively familiar to anyone suffering from endometreosis? Any comments and or suggestions would be so helpful to me!!
I am 29, 8 years ago I was diagnosed with endometriosis by laparoscopic surgery. It is in the back of my uterus and caused terrible groin, pelvic, hip, back, and bowel pain. I ended up having Lupron shot for 4 years and helped a little but does put your body through menopause. Years later I had a son, didn’t have endometriosis issues for about 3 years after having my son and now the endometriosis is back and worse than ever. The most frustrating part is when your in so much pain and you go to er or urgent care and they won’t do anything for you bc ct scans and blood work show nothing is wrong even after telling them you have endometriosis they don’t think pain is too serious. My pain is a stabbing, burning, cramp, ache in pelvic area, lower abdomen, groin, hip, inner thighs, vagina, and bowels. I’m not able to work very much due to pain which means I can’t pay bills which equals stress and seems to make pain worse. If you are going through endometriosis or what you think is endometriosis keep going to ob/gyn appts until someone does something. Ob/gyn seem to be very knowledgeable about endometriosis these days so don’t give up!!!
I have had endo for many years but with little to no pain. Two laparoscopies in the past. A couple of days ago pain in the back started suddenly and it’s not going away. It’s strange pain and not like back pain. Can endometriosis cause such pain in the lower back on both sides just above buttocks
Since I was seven have a fluid filled cyst on my L. Kidney go to the Urologist every year its been getting smaller which is better and one day can leave my body for good which is what the doctors etc want. However, my UTI’s or any kind of infection’s have increased and the pain has gotten worse. This past year it pain has become some days un-bearable to were have gone home from work went in to one doctor who he was like saying for months “its just probably your period is coming.” or “its all in your head.” the next day collapsed at work and couldn’t move my coworker rushed me to the Doctor was put in a wheel chair literally couldn’t walk at the time and another doctor asked me what my symptoms where and she said I possibly had a severe infection possibly long enough that it would’ve killed me. She sent me to the hospital and immediately got me on Hospital strength Antibotics and Iv’s and litearlly the pain was so bad my body was so toxic from a UTI that had been un-diagnosed that had for months that the nurses had to hold me down. After a few days my body was being flushed of toxins I was told that the other doctor how could that doctor seriously not see this? Two months after being Hospitalized I felt AMAZING but now the pain is back and WORSE I blacked out and then one day went blind for a few minutes so went into the doctor got stuck with the one never wanted to see again the one who for months could not see I had a very bad infection in my body well saw him he said “If the pain continues or gets worse and last after a few days come back” well came back twice and each time he keeps saying “come back in a few days” or “its in your head.” so made an appointment Tuesday with a different doctor a specialist doctor. The pain have tho as of lately for the past year is different from the pain from the pain get from period/pain my cyst causes.
Here’s a break-down
-Pain gets worse around menstrual cycle
-Stools become very loose diarrhea or constipation only around then and then after cycle its normal again
– Shooting pain in lower back, rib cage (esp with I breathe deep) pain gets worse when standing or sitting too long, pain radiates down back of legs and into neck/shoulders
-Urge to pee a ton/burning/itching
-Pain sometimes causes fainting, blurred vision, unable to move or concentrate at work/or think
I have been struggling with endometriosis for about twenty years. I try to out on a happy face. And do normal things. I now have cysts on my ovaries as well. Most of my organs were attached to each other several times. My family cannot understand the pain nor do they want to. I do not lay around. I am the one who does it all around the house and yard. And works full time. It is now to the point I can hardly walk. The pain is amazing. I can hardly stand it. Three surgeries….years of lupron. Just feel so defeated. .
I read all the comments too see how women have been coping with endo. I feel for each and everyone of you especially the young victims as this is not an easy disease to deal with.
I have endo now for 25 years since i was 21. I was diagnosed after 10 years, i cannot explain what i went through as i would need pages and pages to write it all down. Unbareable pain on the left leg whole abdomen back and front ,bowel area ,intestines, ovaries ,uterus ,kidneys, bleeding after bowel movement, burning in stomach sensation , hot fevers, chills. Jabbing stabbing burning hot knives in that whole area , uterus attached to left side and back against the bowel area and nerve. ,i have had each and everyone of your symptoms i was a stage four and now i can say im a stage one which is good enough. There is nothing i havent tried from medications pain killers sometimes helped, most of the time didnt. Injections for pain releif, the pill, on a large range of vitamins that worked for 7 months then stopped. After i was diagnosed the dr put me on hormone therapy right away. I took endometril for 4 months , danoval for 1 year and logest contraceptives for 4 years, the medication was all started together. The pain did not completely go away which the dr explained to me but compared to the excrutiating pain i had,i consider myself cured I also take vitamin b6 regulary or a week before periods it helps alot with the pain that is left
I recently was diagnosed with extensive endo during a laparoscopic surgery to remove a cyst on my left ovary. They found the cyst during an ultrasound after I had pain from another cyst rupturing. Before that cyst ruptured I had bad cramps and back pain during my periods but nothing 4 Advils couldn’t fix. They tried putting me on birth control first and I suddenly got anxiety and panic attacks also heartburn and indigestion. I took myself off them right before the surgery. I thought I would be better after the surgery but I lost 10 pounds, I’ve gained six back now:-). I had a bout with insomnia. I had to be put on protonix for indigestion and my lymph nodes in my groin and armpits swelled. My GYNO said she wasn’t concerned that it was normal after surgery. So I went to my family doctor and she is sending me to get ultrasounds. Has anyone had any experience like this? They didn’t remove any endo and suggested I try Lupron before we try to get pregnant. We had already started trying right before the first cyst ruptured. I want to try the natural route first. I have tried to start working out again and getting back to my routine but I get pain behind my knee and in my arms. My body feels completely out of wack. It’s been 6 weeks since my surgery. I have also started having horrible groin and hip pain and I’m not even on my cycle yet. I start in 2 weeks. I feel like the surgery turned the endo on. If anyone has had or heard of someone having any experience like this please let me know.
The surgery was for a cyst which they removed but not the endo? Using Lupron may shrink the endo but definitely not get rid of it. I guess they weren’t prepared to find that? But still, they should set you up to have a surgery.. If they know what their doing. Also have you tried to get pregnant before? You may not need the help of Lupron and what not, so definitely try before you go down that route. Also I was on Lupron for the past 9 months and just switched to zoladex which is similar. I would not bother with Lupron. It was awful, even with added estrogen to help “relieve” symptoms.
I have had bad periods since I aS 14. I am 45 n now r having more painfully periods. For the last six months to year I have had two periods a month. I usually have bad cramps for first two days. I am currently in my fourth day with extreme pain fatigue. It hurts to even move or walk. Don’t know what to do.
This brought me to tears. It described all the pain I feel perfectly. Thanks for giving me the words to describe the pain I feel.
I haven’t been diagnosed with endometriosis but it sounds familiar.I’m 25 years old and have had 3 kids.Every month for 3 days I’m trying to get conformable in bed but can’t. I end up swaying sitting on a flat surface rocking, or tossing and turning curling up around a heating pad shaking 1 or both of my legs. Almost in tears from the pain. I actually accidentally over dosed once about 4am on ibuprofen. .he pain starts in my right hip feels like in the bone and quickly spreads to my lower back all th way around down my right leg (again in the bone it feels like) to my ankle. I don’t know how go cope Anymore. Please help
I am glad I found this website! I have been dealing with a right side pain next to my hip bone. I have had so many different tests and everything has came back normal. I then had a exploratory laparoscopic and they find endometriosis not very much but saiid I had it. I then got the lupron shot and did nothing for me except give me a migraine they tell me the only way to get to it to scrape it off is a hysterectomy I’m not sure if I am ready for one but if that will stop my pain I will do it cause I’m missing out on life with the child I do have. I went to a different surgeon and he tells me he don’t think the endometriosis is what is causing my pain he thinks it’s something else because the lupron would of helped me so now I’m so confused on what I should do if a hysterectomy isn’t going to fix me I don’t want it done but they still can’t figure out what the pain is
I should also add my pain has not been worse with periods it’s the same no matter what time of the month it is the only way to get my pain to stop is to lay down with heating pad
Hi all,
It’s been a while since I’ve posred. I get terrible pain right below my butt in my legs & have had pelvic, abdominal & leg pain for years. I have been diagnosed with fibromyalgia and endometriosis and am on medicine for both. My gyn did a partial hysterectomy (2013) and just removed the uterus because they didn’t know I had endometriosis even though I had a laparoscopy in 2010. Apparently He didn’t know how to treat it very well. I had gotten a second opinion and she sent me to an oncologist that does other surgeries as well because she said I needed someone that could be more aggressive. I’ve heard opinions on estrogen for and against birth-control pills and what the oncologist told me was that the estrogen feeds the endometriosis but why they put us on birth control pills is so that it levels out the hormones in your body so you don’t get spikes. I just had a total hysterectomy with everything removed because she said that if I keep even one ovary the estrogen will feed the endometriosis and It’ll come back within two years and I’ll have to have more surgery. I have one boy & two step daughters. I think that my pain is from endometriosis because everyone else on the site seems to have the same issues as me. If so this should cure it! I’m very hopeful but Its only been about 1 month so I’m waiting for all to heal. They just removed more endo from ligaments behind my cervix and my ureters. I just want to be normal again & hope that for all of you ladies too!!🌹
Endometriosis is a continious sharp stabbing pain. It feels like a knife end just stabbing you. Every period is different. … some are ok and some are unbearable. I really sympathise with all the women who are dealing with this disease.
Thanks for this article – it’s very helpful. I’ve been experiencing heavy and extremely painful periods since the start of it, 18 years ago. I’m 30 years old and gave birth to my daughter three years ago (today!) by emergency c-section. Since her birth, my periods, although very regular, have been increasingly more painful. I have pain throughout the entire month now, instead of just the week before my period. Back pain, abdomen pain, hip pain, leg pain, groin and bladder pain. I’ve recently been in the hospital 4 times looking for answers and all tests have come back negative for kidney stones, gallbladder, uti, and more. One of the doctors in the emergency room asked me if I’d ever talked to my gynecologist about endometriosis. I started doing research and realized that I had almost all of the symptoms (if not all of them) and have been realizing a slow progression of increased pain over the last few years.
My husband and I started trying for our second child over a year ago and were unsuccessful. After a year of trying, we gave up and found content with one. However, putting the pieces together now, I realize endo might be a perfect explanation for our infertility. Although we’re not looking to have any more children at this time, it’s nice to know there might be a reason as to why it never happened. Something I was chalking up to stress at the time.
I have an appointment with my gynecologist this week to discuss everything but it all feels so overwhelming, I almost don’t know where to start. I am nervous they’ll insist birth control when I’m not interested. And I know I have to push for a specialist if they don’t agree to pursue these issues further. I’m also of course nervous about being diagnosed and living with this, and then on the opposite scale – not being diagnosed and having to continue searching for answers.
Just sending a little note out there for others who might be experiencing the same, as I feel very much alone on this journey since I don’t know of anyone else personally who is suffering.
I can be reached at jayleareid@gmail.com with any suggestions / advice you may have!
Thanks and good luck to everyone.
This sounds so much like my life. I am currently in bed in excruciating pain this month. Suffering for years every month. Every ob gyn has dismissed this as dysmenorrhea or go on the pill. Now I can’t even go on the pill as I’m 44 years old and bloodwork revealed issue w clotting so they won’t give to me. I’m reading alot about this and learning that only specialized surgeons (few in country) can handle this but do not take insurance. I am in no financial situation to spend $25,000 on a surgery to get rid of this. Although I’ve never had a lap to confirm this diagnosis I am 100% sure I have it. You are not alone. I do not know where to turn. I am so sick of suffering every month and how this plays into my quality of life. Its horrible
Hi all. I’m trolling through the Internet to find an answer and maybe this is it. I am in pain the majority of the time. Pain in tummy, back and legs. I’m getting a little low with how it’s wearing me down. Is this the kind of symptoms everyone else has experienced. It feels a little better when taking birth control but periods really heavy. Thank you if anyone gets back
That is the same pain I have. My tummy is tender to the touch but I’m always in severe pelvic & leg pain. Check w ur gyn. At the very least they should do an ultrasound. It could be endo but it could be cysts or fibroids. You really have to push doctors to do what u need to for ur health. I went to one of the best & he didn’t even want to do a lap to look around. I went elsewhere & I’ve had 2 surgeries to remove it & a hysterectomy. We’re the ones in pain & it’s seems the norm that they brush us off….
Yes. I’m having the same pain in my pelvic,back, and yes my LEG. For me I think it’s time for a second surgery .
Hi
When I started my period it was never this bad….few years ago it started.
So bad that I had to leave work to go see a doctor. They told me its normal for the last couple years…im 25 now and believe it or not it actually showed the endometriosis on a scan…I was terrified. Wanting a baby for +-2 years now…thinking that I was the only one struggling to fall pregnant.
Well I was in tears after leaving the surgery.
I have an appointment with a gyn.
hoping for the best but thinking the worse.
I have all the signs for very long now.
Im 15, I keep getting pains in my stomach, ribs, just below my body, my leg sometimes when I walk and my back when I stretch. I also havent been on my period for nearly 4 months what is this?
Thank you! I suffered for years undiagnosed and just went through an 8 hour hysterectomy on Tuesday. They had no idea…took three years to get into the gym department at the VA. They made me feel like it was all in my head for so long! Made them promise a hysterectomy after trying an ablation in September (which failed). She was quite shocked to find my ovaries buried in endometriosis- left had attached to pelvic bone and right to uterus. My post surgical pain is quite intense, but finally having an answer to what the problem was is a huge relief! Ladies…DO NOT QUIT AND ACCEPT ANY ANSWER IF YOU FEEL SOMETHING IS WRONG! You know your body!
Thankyou Mary. I had hoped an ablation might be the answer for me, but its not. Suffered for years. My gynaecologist was brilliant today, only option full hysterectomy & possible bowel resection booked for early Dec. All the best with your recovery
Hello, I was diagnosed in December 2014. I have been taking bc pills and still have an iud. The bc pills worked for a short period, but now the pain is back and it hurts more than ever. I have an appointment on Friday with my Obgyn to discuss surgery. I’m not sure it will work, but I am desperate. I cannot stand the pain anymore.
The past 10 days have been a emotional nightmare. Living a normal life to all of a sudden been burdened with horrendous period like pain in my stomach at 47 I hadnt a period in 10 year with no medical reason ever given. To all of a sudden aquire period pain was unusual to say the least.
After days of suffering period pain and now backache I decided a trip to the doctors was needed. The doctor has put me on buscopan thinking i could have IBS after 4 days of trialing buscopan I’m still in the same pain I was before going to the doctors.
I have now been experiencing difficulty in walking,bending,hip pain and along with horrendous back and stomach pain.
I wasn’t convinced about the IBS diagnosis however I am convinced I have endometriosis.
How difficult is this illness to diagnose as I don’t no how much longer I can cope with the pain
I’m 22 yrs old and was diagnosed at 21 a month before my birthday with Stage 1 endometriosis. I was grateful to have 3 beautiful healthy babies. I’ve always had horrible and painful periods since I got my 1st period. I’ve had my tubes done at 21 yrs old and that’s how I found out I had Stage 1 endometriosis. My lower back always hurt and I’ve been getting a lot of pains shooting through my lower stomach. Now I’m on 2 days of having sharp stabbing pains on the right side of the groined. I’m always feeling tired but yet I can’t sleep with the back pain or the belly pain and now the groined pain and I have days where it’s to much that I don’t want to get out of bed because of how bad the pain is. :/ but my children are my reason of getting out of bed each and everyday. I just don’t know what to do anymore 🙁 I have no one I can to talk to about it because I don’t know anyone else with endometriosis and I don’t really talk to my hubby about it because he doesn’t understand what I’m going through and he usually just says you don’t hear me complain if my back hurts or if I have any kind of pain. So I just suck it up pretty much now and don’t say a word and act like I’m fine even when I’m not fine. It’s been hard road living with this!
Read that a male endo specialist once said that men having trouble understanding endo pain should imagine what it would be like to have their testicles taped tight to the inside of their thighs and then be asked to walk round and do all their daily activities like that, childcare, work, exercise.
I would suggest you then throw in bleeding from them so they are sore to boot.
And that you have constipation from bowels bound up in scar tissue and pain using the bathroom.
I don’t think they would just suck up THAT pain somehow!
In fact, that’s why there is pitiful little research – it doesn’t affect men’s quality of life, their livelihoods or their virility. It’s not damaging their organs. If it did, that would be another story. Research would have had money thrown at it for decades.
I have been suffering with out of character period pain that is hard to describe. The last 5 months or more I have had really bad back pain which I have never had in my entire 38year life when having a period Or after my period which is when it seems to come on. For the first time ever my period only lasted total 4 days when it always has gone for at least 6-7. I also get weird pains right across my abdominal region??? have had an ultrasound on my uterus and nothing seems to be of concern????
It’s my understanding that endometriosis can’t been seen with an Ultrasound, or any other imaging for that matter. I had a laparoscope done after all of the imaging came back negative and it turns out that I did indeed have endometriosis. My doctor had warned me prior to the tests that only a laprascope would be able to identify endometriosis, but he needed to rule out other stuff first.
Don’t just settle for an ultrasound!!! Endometrosis can only be seen when a laparoscopy is carried out it does not show up on an ultrasound . Push push push your GP don’t accept no for an answer – I have been in constant pain since 2013 due to being fobbed off – It sounds like you have endometriosis and the longer it’s left undiagnosed the worse it gets
I had my first period when I was thirteen, and spent the day thinking I was about to die. Since my mother had painful periods, and I was young and it was new, it was written off. It has come back for at least 7 days a month with varying intensity for 12 years. Usually 2 to 3 days are absolutely unbearable, and involve hours of rocking back and forth on the floor crying, running hot water over my back, heating pads and enough OTC painkillers to ruin my kidneys by now. The pain is so intense that I become disoriented and dizzy, nauseous and I will commonly vomit. During finals week in college, I passed out twice in the same day, probably because of the stress plus the unbearable pain. I have had 4 separate doctors tell me that its just part of life. I have to move carefully now, because flexing my stomach at a certain angle or moving my hips a certain way results in a very strong very sharp pain, like I am ripping my body apart. I feel like I go through the pain of childbirth every month! I have had ultrasounds and blood tests and a lot of stupid insulting comments from doctors until I lost hope. In the pain, in the moment, I contemplate suicide because I cant live life like this another decade. I finally turned to the black market to buy the only thing that has ever brought me relief: opiates. Expensive, sketchy, and dubious quality and content have still given me the ability to hold down a job. When i think of the doctors who ignore someone like me, it seems criminal to deny me medical attention just because I am a young woman and my pain is related to menstruation! That is my story, the story of a broke ass young girl who “just hasn’t learned how to handle cramps”
Dang girl! I am so sorry. Any updates?
This article is incrediably helpful! I’ve had it since i turned 15 which is strange considering how young that is! I wasn’t diagnosed until I had a molar pregnancy and also had to get an ovary removed. I get cysts on my ovaries every month and one was once to big to the point we had to get one taken out, and while getting those procedures done they found so much of the endo,. I was than getting surgery to reduce the amount that they found, and than put on a shot for 3 months that basically put me through early menopause.. I’ve become fairly use to dealing with discomfort at this point but sometimes there are days i feel like im crazy! and trying to explain to people what that sort of pain feels like is almost impossible! and that is ok because im thankful no one else has to understand that, im happy they dont have to endure it. This article is very self reassuring to make sure you really arent crazy, and you really aren’t being more dramatic than you believe you should be! So thank you so much for this article.. I do have a question though if anyone would be able to answer.. I read somewhere that after 2 years of being treating its very very likely that the endometriois will reoccur where you will have to seek treatment again? This month would mark two years, and i was curious are there any actual tests they can do to findout if its come back? I know that they can only see the endo if they go in and see it well thats what i’ve been told so far so does anyone know if theres any other way to find out without getting another surgery?
Hi, yes they can do an internal scan which will show up any regrown endo and or cysts.
i have been back to the hospital myself today and will be starting the artficial menopause injections in a week or 2.
i was diagnosed at 21 and had endo removed via laproscopy, i have had surgery every 2 years since 2006 and will need another after 6months of menopause although my surgeon says that it could take upto 2years for the body to return to normal (or what we class as normal to us) after the injections.
I would go to your gp and ask for a referral if you are worried, its always better safe than sorry..xx
I love this article, it is nice to finally understand why it feels like some one is jabbing me with a ice pick in the abdomen randomly and can carry on for an hour or days. Some days it feels like bloating with pain behind it. Pressure, like form fitting pants etc makes the pain almost unbearable. Loose fitting clothes help this a little.
As if the above is not fun enough, it takes the fun out of sex too,as this only irritates it. It’s worth the pain …most of the time (one time I ended up in the emergency room). Also many people don’t realize that it comes back. With me it’s like clockwork every four to five years. (Unless their is a child in between which naturally clears it up)
It was nice to see in the article about the chronic fatigue . I do have a busy schedule, kids, full time job, long commute and of course the household chores.(and I’m not getting any younger but I’m only 39) I don’t think I should be exhausted just by the time I get home. So as I face surgery for the 3rd time here’s hoping I get my energy back.
Hi everyone, I found out that I have Edno , 2 yrs. ago. I had surgery to remove a fibroid, and as going in to do that they saw endo. I’m stage 3. Today, actually all week has been tough because of all the pain. My pain doesn’t hit during my monthly only after. Weird! But it’s day 3 after my period and I’m so tired , fatigued from hurting. Sometimes the pain killers doesn’t help. But I did find out, that if I eat gluten free and exercise at least 3 times a wk. my pain stats away. I found out my solution, but it’s not easy keeping to a endo diet. So I cheated for about a month! Lol! And now I’m paying for it. If anyone has any questions about trying to live with endo, with out taking birth control or any of the other meds. The dr. Has told you about just ask. I had to find out myself. I did a lot of research. I didn’t want all the side affects of steroids, and I sure didn’t want an hysterectomy. Good luck you all, and God bless!
Hello Faye!
I. Would like to know what kind of diet helps you keep the pain away. I had a partial. 4 years ago with my ovaries still intact and seems lik sinc then. I hav debilitating pain for which the doctors have no answr. I f a certain diet can help to reduce these episodes, I need to know about it. Seems there is no where to turn and I want to give up. So sick of the pain. Thanks in asvance.
I had a complete hysterectomy several years ago because for 15 years no doctor any where could figure out what was wrong with me or why I was having all this pain. After my surgery, my dr told me I have endometriosis, as he didn’t know until he got in there to see. He said my ovaries were bound by scar tissue from the endometriosis and your ovaries are supposed to move freely. Long story short, I still have pain from endometriosis. I am not sure if it came back or the dr never got it all but the pain I have is excruciating. It is a constant pain and it feels like something is in there pulling and tearing. Heating pad helps but the pain never goes away. I am not on any pain medicine except otc but it does not touch my pain. I cannot work or do things I used to enjoy. It has taken over my life.
im 26 and got diagnosed with endrometreosis late last year after struggling with pain from the age of 14. i succesfully had a baby at 20 years old with no complications. i struggle with the emotional and physical pain of endrometreosis everyday and have too take a cocktail of painkillers too keep me gping iam unable too work and
I’ve had issues with my cycle for as long as I can remember. I started earlier than most at 8 and remember being told to suck it up… that every woman went through it and that I just needed to learn how to deal. In my late teen years it got so bad that I became anemic and the pain got worse… much worse. I didn’t learn about endometriosis until after my first miscarriage… I’ve lost four all together now the last was ectopic and my right fallopian tube was ruptured and removed. I’ve have several cysts, many periods lasting 3 weeks or longer… some days it got so bad I couldn’t even turn over to get out of bed. Yet Now even at 25 doctors are “still not sure it’s Endo”. I’m on bc for hormone balance and have been for almost a year… I’m managing (thankfully without a period for the most part) but I still have good and bad days. Having endo is life changing to be sure, but it’s not the end of life… it doesn’t make you any less of a woman and it’s Not impossible to live with. Wishing you all the strength to get through each day…
I was diagnosed with endometriosis 5 years ago by laparoscopy. However, I had been struggling since I was 13, I am 29 this year. It makes life hard, I often feel tired or in pain and I worry that the painkillers will lose their effect over time. Been through failed IVF, given up hope of having children. Would like my health to be better though, even if I can’t have children. Living life looking for the next toilet all l the time is horrible. Don’t give up hope everyone, hopefully a cure will be found one day soon!!!
If you are not a member of Endometriosis UK I would advise you to join, they are really trying to be a help as much as possible, they are pushing for better diagnosis etc.
I found you listings very interesting and makes life easier when trying to explain to someone what I’m going through. I have been going to my gp since sept 2013 with pelvic pain, each time being sent away with them telling me it’s periods pains. In February this year 2015 I ended up twice in A & E at my local hospital with crippling pains in my abdomen, legs and back – I was referred to a gynaecologist who did a laparoscopy then discovered that I have severe endometriosis’. During the operation they removed over a dozen adhesions and freed one of my ovaries, the other is fused to my bowel and they were unable to touch this due to further complications. They then put me onto monthly injections of Zoladex (big mistake) the side effects are unbearable and have ruined my life for the last 3 months – still with abdominal pain and side effects of the injection I begged my doctor to bring forward my gyni appointment – I had this appointment on Monday only to be apologised to and told that I’m now having a full hysterectomy in the next 4-8 weeks. I feel completely let down by the NHS, if I had been referred sooner then I wouldn’t be where I’m at now.
I have all the symptoms but I have more symptoms like hair exsessivually falling out and dry skin all the time. Tired a lot .. It hits me half way in the morning. Feeling nausea and dissy. Blurry eye sight not wanting to drive I’m scared. Doctors said it Was my bowel then it Was cyst. Now it’s a UTI. I’m confussed i dont know what to do anymore. Anymore have advise about my situation..
I know this comment is months late…but have your doctor look at your thyroid levels too. It sounds like you could also be Hypothyroid, which can be related to endometriosis.
This article is spot on! I have experienced terrible pains in my abdomen and shooting pain down my legs for years. Every doctor dismissed me and just said we will put you on birth control, your problems will settled. With my last doctor I even explained that I had a family history of endo and that I was positive I had it, her response was- I don’t think so…let’s try a different BC. I was on the verge of a breakdown! That’s when I finally found a Dr who would listen to me. She immediately ordered a lap and sure enough it was endo. After, I began to take my BC continuously to stop my periods in hopes that my pain would go away. Unfortunately, that only worked for a short amount of time. It’s been about 6 months since my surgery and I am having extreme pains again. I hope and pray it doesn’t last long 🙁
LADIES- please do not let a Dr dismiss you. If left untreated, you could experience difficulty having children in the future and Noone ever wants to hear those words- you cannot conceive. Do yourself a favor and find a Dr who understands what your going through and wants to help you at all costs…they are out there!
Yesterday I found out I have an endometrial cyst on my left ovary. I have been awful pain for about a year, when it was close too my period the pain would be almost unbearable. I just grinned and beared it. It finally got too where one morning I could barely walk. I broke down and went too the doctor. They found a hemorrhagic cyst, after two months they found the other. Im waiting on my ultrasound results now too determine where we go from here. Im so glad I went and now I have atleast some idea of what is wrong with me!
I believe this is what I have as well. I have always struggled with very heavy painful periods since I was a teenager, however about a year ago I started experiencing this horrible pain that hit all of a sudden, brought me to my knees & could barely walk, fever, nausea, abdominal area was extremely painful to even barely touch, achy muscles n chills, excessive bloating, etc. Nothing helped ibuprofen, naproxen, etc. I ended up in the hospital for almost 3 days under observation to determine if I was experiencing appendicitis or if it was something uterine related. They ended up diagnosing me with endometriosis & said I had an endometrioma cyst rupture. I went to my gyno as soon as I could & she put me on the Lupron Depot shot for 3 months & it was the best pain free 3 months! Once it wore off & my periods started it was right back to the horrible pain, &every month it’s worse than the last. This month i also had what feels like pressure on my esophagus & when i eat feels like the food isn’t going down & almost like it’s stuck. I’m I’m so tired of the pain it’s cauSing & being bed ridden.:(
I am lying here in bed with the worst case of symptoms of endometriosis i have had since the early 90’s. When i was a teenager i had the most horrendous period pain, unable to move and it took everything i had to just be able to walk. Then about 6 years and a large amount of relentless effort trying to explain myself, i was offered a laporoscopy and then found this. I am in 5 days due to have my 15th surgical proceedure (15 over 22 years) and hope it works as this pain is hideous. My stomach feels like it’s on fire and melting into my leg’s, my pelvis feels like it’s in a vice but being stretched apart, i have back pain, leg and arm pain, pain radiating up to my chest and down to my hands. I feel weak, hot, faint and all in all like i am melting. So to sum up i feel like i have been in a fight with a professional boxer ! This disease is horrible and requires a huge amount of stamina, personal strength and mental strength. So if u have it, we are all heroes in our own battle 🙂 keep strong …
This is a very helpful post and it describes my condition spot on!. I was diagnosed in March 2014 with Endo and discovered I had multiple chocolate cysts on both ovaries and was put on OC pills for 6 months.The pain had disappeared and also the size of the chocolate cysts had drastically reduced during this 6 month period.But ever since I stopped taking the OC Pills,I think the Endo has re surfaced and I am in terrible pain the most of the time. Severe pain in the lower abdomen. I’m getting depressed with how it’s wearing me down.The worst part of it is that when people around you think you’re exaggerating the pain, since on the surface I Iook just fine.My doctor has advised me against a laproscopic surgery to remove the cysts since I’m 27 and yet to bear children.I’m glad I found your blog and I find that I’m not alone and people with Endo have experienced similar symptoms.
Hi everyone, it isn’t nice to read all of these stories but it makes me feel less alone. I’m only 17 and for the last three years I’ve had doctors dismissing my pain because I’m “too young to have anything wrong with me” and “it’s just what all women deal with get over it”. But out of everyone I’ve grown up with, none of my friends struggle this way. I’ve spent this entire week in bed, missing out on school (Year 12) because I simply can’t walk. My entire lower body is in agony. If I sit down I feel like someone is shoving a wooden spike up inside of me. I feel like someone is simultaneously scratching out my insides while crushing my stomach and I the pain my my lower back and legs is indescribable. I live on 90mg of Codeine with 1500-2000mg of paracetomol every 6-8 hours, plus Tranexamic acid three times a day because the bleeding has rendered me anemic, and I frequently pass out due to blood loss and pain. I’ve been passed around from doctor to doctor, to gynie to gynie, I’ve been put on 11 different birth control pills but I have a hormone sensitivity so they make me throw up constantly. I lost a LOT of weight due to consistent vomiting. I’ve been given the implant in my arm, only resulted in me having a constant period for four months straight. I recently went to another gynie who examined me and decided that she wasn’t going to treat any endometriosis as she believed all my pain was from sexual abuse and consequently PTSD. However she got my ultrasound results back and immediately put me on the waiting list for a laparoscopy and insertion of a mirena. I have been told that my endometrium is approximately four times the average thickness of a normal one. I’m so hopeful that this finally works. I can’t participate in day to day life due to heavy, painful periods that last up to two and a half weeks, I can’t have any kind of sex life, I’m severely depressed, I’m struggling with school and I’m so hopeful I’ve found a solution. This really helped me feel like I wasn’t alone in this. Thank you all xx
I have had bad painful periods since I first got my period in year 5 at age 10. For years a battled with it, along with chronic Migraines (hormonal) and fatigue,having trouble sleeping, sore joints, sore lower back, ex-mar on my hands, constant sinus infections. Thinking that the pains I was experiencing where just normal. It always felt like I was been stabbed in the abdomen, ovaries (mainly right), hip, pelvic area as well as a soccer ball hit and a chain saw. I just wanted to curl up into a ball, fold myself in half or stretch out. No matter what position it always hurt. I have tried many pain relievers none of which have worked all that well. Not even hot water bottles or heat packs 🙁
It wasn’t till I got to high school that I realized my pains where different to that of other girls. Especially in year 11 and 12 when I started getting really bad hip pains, mainly always my right side. Had trouble moving around and going up stairs as they aggravated it. My other pains got a lot worse, more trouble sleeping (just can’t get comfy), my libido got high, started having vagina pain, irregular periods 1-2 weeks apart, ovulating twice in a cycle, emotionally unstable some days (combo of all these made it near impossible to concentrate) , after dancing for a little while I would have to stop as I would have the worse pains 🙁 and this year I started to get leg cramps, intercourse hurting continually after the first time.
I have noticed throughout the years with my pains that I will sit differently and or lie differently to try and compensate it all, which often throws my back out of alignment :/
All this lead me to Endo after having many doctor visits, blood test and an ultra sound; which didn’t show anything; so was diagnosed with poly-cystic ovaries – the whacked hormone side not the cysts thankfully. I finally got a referral to see a Gyine this year as the pill wasn’t doing anything and was also to higher stroke risk with my Migraines. I got the Mirena put in, in April this year. At my last check up with my Gyine, after I practically screamed at her she finally believes me that I have a few spots. She wasn’t convinced at first because I was so young (18). I am seeing her again in November for an other check up. If my symptoms haven’t changed since then she’s going to take me to theater and perform a lap on me.
It is very hard most days to find motivation! On the few good days I have, I make the most of it and go horse riding and catch up with friends and if I can afford it get a massage. Other days the love of my job keeps me going along with my Kelpie Max 🙂 who gives me lots of cuddles and gets me out of bed and even the house for a walk or run even on my worst days. When I was studying at High school and my libido got quite high I found the gym was helpful as not only a stress relief room studying but also a good mind distraction. still go when I feel up to it now or high libido.
On my bad days I take it easy and sleep most of the day, watch some movies, read, eat what ever I feel like and drink plenty of water.
My name is Sara and I have been living with endometriosis since 2009, after my second child. There are no words to describe my pain until I read this…..
I have struggled with doctors understanding what kind of pain I have been living with. I have been treated with birth control, Lipton shots, a partial hysterectomy. And still I live with this stabbing pain ! Every time I go to the doctor I am looked at as if I am a ” drug seeker” only leaving me depressed and lost ! I don’t know what to do at this point. I am 28 years old. I have been accused by doctors and nurses for only wanting one thing…., painkillers and the end of the day the only way I can live a normal life is to take pain medicine to get through my day. I am currently trying to get reffered to pain management . Because I cannot find a cure . My gynecologist wants to take my left ovary but at this point in my life i am not ready to give it up. I am sad. I am lost and I need help! I live in chronic pain. How can I go another 20 years living this way?!? Please someone help me. Any words of advice! I need help! Everyday I want to die because I realize there is no help for me….. At then end of the day I just want to be happy with my two daughters and husband. This condition has ruined my life. I feel that doctors do not understand how painful it truley is and only look at me as a 28 year old looking for drugs! …… I need help
Sara
I know it’s terrible. I’ve been living with these awful pains since 2001 & am 37. I finally had a full hysterectomy but am still in pain. There is something wrong w my pelvic/abd/leg muscles & I have problems sitting, standing & just plain hurts to be alive. I asked my dr. for Cymbalta. I have 3 kids & a wonderful husband. I was feeling so low & just wanted to die but I want to live too & enjoy what I can. I take a lot of pain meds & work full time. People just don’t understand what it’s like to be us. Cherish the beauty in your life & get on an antidepressant that helps w chronic pain too. It will help w the hopelessness. It really sucks but at least we don’t have cancer or Parkinson’s. That’s what I try to remind myself. That as bad as it is at least it’s not worse. Hang in there.
Best wishes🌻
Are there pain medicine out there that I can take with antidepressants and anxiety? I wasn’t sure you could mix the two!? Thanks Sara
Sara,
There are a few. I know cymbalta & Savella are a couple. I go to a pain doctor. I’ve been on Vicodin but it’s not been strong enough. I am now on tramadol. Which is a narcotic that also works as an SSRI & Norepinephrine RI. Try to find a good dr. I got a reference and looked for a pain dr. that was associated w the best hospitals. Cymbalta is for chronic pain, antidepressant & anxiety & I can get it generic. Savella was expensive & I didn’t like the feeling I had. Too out of it … Whatever u get check the manufacturer website bc sometimes they will give u a coupon to get it for cost.
There are a few. I know cymbalta & Savella are a couple. I go to a pain doctor. I’ve been on Vicodin but it’s not been strong enough. I am now on tramadol. Which is a narcotic that also works as an SSRI & Norepinephrine RI. Try to find a good dr. I got a reference and looked for a pain dr. that was associated w the best hospitals. Cymbalta is for chronic pain, antidepressant & anxiety & I can get it generic. Savella was expensive & I didn’t like the feeling I had. Too out of it … Whatever u get check the manufacturer website bc sometimes they will give u a coupon to get it for cost.
Sara,
Endometriosis sucks. However, you have a child which is awesome! Some people with endo are infertile and will never get that opportunity! Also, you are already married which is awesome. Having a good support system definitely makes things better I’m sure. I am 22 and am not trying to belittle how you feel at all. It’s just that who knows if I’ll be able to have kids.. And I feel that having endo makes me isolate myself so i feel that it’ll be hard for me to let someone in on my condition and find someone who is understanding and accepting of it. Doctors thinking you are a drug seeker is CRAZY. But trust me at the age of 19 I was treated the same way.. Passed on doctor to doctor who just gawked at me and didn’t take me seriously and sent me home crying with me thinking it was all in my head. It got to the point where I didn’t know where to go anymore and felt crazy for continuously calling but at 19 I didn’t feel right seeking out other doctors. Stay strong because the good doctors are out there somewhere!! Trust me. Mine was hard to find and I heard from a friend, otherwise I would have never of found my doctor. Don’t let them take your ovaries, I’m sure that does not even help. Especially if you want more kids. I’ve done zoladex injections and birth control which really lessened the pain as well as having gotten 2 laparoscopies to get the endo out. Even one made me improve soo much better! I just got a second when I went to a new doctor and she wanted to make sure it was all gone/taken care of. Hang in there! 🙂 we all are suffering, you are not the only one. But again, thank god there are things we can do to manage it!
Can’t get an answer off my doctor 😒 I’m 34 and got my tubes clamped 3 years age about a year after I started gettin sharp stabbing pains and it felt like it was my overys my doc sent me for an internal to cheak them and saw nothing and put me on the pill (witch is the only reason I got my tubes clapped in the first place so I wouldn’t have to take them) it has not done anything but I’m still trying to cope with the pain now the pain is stronger and shouting down my left leg and even tho I’m on the pill I find two days into the pain that I’m spotting and it’s old blood I’m at my wits end iv 3 kids and trying to cook a dinner on one leg is not funny braking out in a swet at the same time dos this sound like it?
Hi. I’m experiencing more and more pain this year, my mum has Endo, I think my aunty has it, too. Just wondering if as well as the “normal” pains, could it be possible to feel it in the back of your throat? Like, if you sit down too hard?
I was finally diagnosed with cysts on both of my ovaries and endometriosis yesterday. Two years ago I was told I had a cyst on one ovary and that it would probably go away. This was after experiencing severe traumatic pain, unable to walk, screaming in pain, unable to sleep or move. It felt like a severe stabbing pain (no localized spot) in lower stomach above my groin. The doctors would always ask point to where the pain is and I would roll my eyes because when the pain comes on it’s not in one spot!
After the pain subsides (very rarely do pain killers work) my stomach is tender to touch, urinating and bowel movements are sometimes painful. Sitting is sore, and it’s no fun at all.
Of course the solution by a gynecologist is always the pill, so I started on that and a week later I was dropped to the floor by the pain, screaming and crying. That is when I finally got a diagnosis from an Ultra sound. I have to take the pill for two months then they will follow up with a pelvic and abdomen ultrasound. If the birthcontrol isn’t working then they will decide whether or not to do surgery.
You really have to be forceful with your health care provider and continually follow up with them to actually to get them to take you seriously. It is very frustrating, it seems they don’t understand the pain. If my career is hindered because of this, it’s not ok!!! I have made this very clear to my doctors, and finally they are taking me seriously. Sometimes I think if I was a man having this pain who had to be driven home from work because I couldn’t walk, a doctor would solve the problem a lot faster. But because we are women we are just supposed to live with it!
Thank you so much for this article! the article and the comments have been a huge help and relief for me.
After some research I believe I have endo, but because it hits 5 days before my period, and isn’t monthly (anywhere between every 2 or 4 months) I never made the connection. I always thought it was gastrointestinal, so i kept trying to avoid certain foods, thinking that was it (dairy, gluten, eggs, etc). Nothing helped. I noticed when the pain started this time, it was a few days before my period, and with the help of my period tracking app, and the sick days i used, i realized it only happened 4 days before my period!
Went to my primary care doc, and explained my symptoms: one day of the worst diarrhea cramps ever, extreme bloating, entire stomach sore to the touch. Followed by three days of the pain and bloating slowly (and I mean slowly) going away. She said it was dysmenorrhoea, and i should take advil the day before it might start. My head almost exploded.
Does anyone else have (or have heard of) endo happening before their period? and not happening every month? I’m 45 and have always had non-painful periods (lucky, I know) but at times pretty painful ovulations.
I have an appt with an GYN that specializes in perimenopuase, and am hoping she can help. *fingers crossed*
I read through these comments as I sit with my heating pad waiting for the Advil to kick in.
My symptoms started when I was in high school, but I always chalked them up to bowel issues. I had a cyst rupture in 2008 when I was 18 that sent me to the hospital. I actually got pregnant not long after. Imagine my surprise when I didn’t have any bowel problems after I delivered! Not for the first year or so. After that, my periods progressively got worse and I was chronically and PAINFULLY constipated. Once a month I would get very sick and throw up repeatedly. After a dozen or so ER and GP visits, I was told it was probably IBS. No tests were ever run. Because it always happened just before my period, I never made the connection to my cycle. I thought perhaps it was my iud and I had it removed in 2011. It didn’t change anything. I got pregnant again in 2012 and during an early scan my doctor noted that I had several good sized cysts on my left ovary. I never asked the questions I would ask now.
After my twins were born, my cycles were normal and my stomach problems seemed to have abated for the first year to year and a half afterwards. They started again summer 2014. My periods became increasingly painful. About 4-5 days before they begin I had mild cramps and backache that became progressively worse each month until this past Christmas season they were “horrible”. At first, the cramps subsided when I started my period and returned for a few days after my period was over. I also had severe constipation around my period too. When it got bad, I could barely move from the couch for days.
This spring it escalated to occurring randomly throughout the month as well. I’d get mild cramps, backache, deep burning pain as if I have open wounds somewhere inside my lower belly, or behind my belly button. The pain also started becoming pronounced after sex, not during, but after I could spend several hours in pain. I started having UTI symptoms that sent me to the hospital or doctors repeatedly. I’d tell them my symptoms and get an antibiotic and go. I was having UTIS with EVERY menstrual cycle. It was crippling and scary and humiliating on top of the cramping, burning belly pain, hip pain, back pain, leg pain, and severe constipation. I was losing my mind.
Since May, I’ve lost so many hours at work. I can’t spend as much time with my kids. I had to leave college a month early last semester because I was in constant pain. Thank GOD my professors worked with me at a distance. I considered dropping out. I spent most of this summer in and out of the ER and doctors offices. None of them seemed to take me seriously at all. Basically, they’d give me zofran and a mild painkiller and tell me to see a gastroenterologist for my IBS. 😷
I also have Bipolar Disorder, OCD, and PTSD (Yes, I’m still amazed that they can all exist together). My anxiety and mood swings became out of control. I felt hopeless and like no one took me seriously because I am a woman and because I have mental illness. I started contemplating committing myself because every single doctor told me it was IBS, and IBS is in my head. Or that it was somehow related to my anxiety or my bipolar. I felt like I had lost my mind.
That was until I finally went to the ER in July, and the doctor on duty asked me if I had considered it being a gynecological issue. He asked if I had any family history of endometriosis, which I do. My grandmother and aunt both had very aggressive endo (and neither were infertile). He referred me to a gynecologist, and a month later I spent 2 hours in their office detailing every symptom and every detail. My new doctor said she believed that’s exactly what I have, and without surgically confirming it, she said she felt 90% confident its endometriosis. I agreed to try progestin only bc pills, and if they didn’t improve things we discuss lap surgery to confirm diagnosis and treat in November.
I’ve been on these pills fourteen days today, and tomorrow is the day my period is due. I thought they were possibly helping because I hadn’t experienced any pre-period pain… Until I woke up today… And somehow it’s worse than ever. I haven’t even started my period and it’s intense. I considered calling their office, but I don’t want to be a bother I suppose when I’m already going back in November. Reading these accounts of everyone’s experience gives me hope and also makes me sad for so many women who suffer needlessly. I agree with previous posters that if we were men, it would be different.
I found this extremely relevant to my situation. I have always had heavy periods I just thought this was a treacherous time to be a female, so I never thought about telling my doctor. I remember in Middle School having accidents and having to go to the nurse for going through, then being sent home. After I had my children C-Section, not to mention the fibers of my womb wouldn’t stretch to allow me to have childbirth normally. Trust me, my water broke at home, 8 hrs later with no pain meds, because I was doing this by myself and didn’t need the drugs to be in my babies system, I was forced to do a C-Section because the baby was starting to struggle. My cervix didn’t get past a 1 or a 2. Now I have had terrible Menstrual cycles pain and bleeding so you can’t leave the house and pray that you take enough supplies with you, Super Plus pad and tampon every 2 hours or so, if you have to eave the house. Come to find out I also have cysts on my ovaries and excruciating pain that goes from my back all the way to the tips of my toes and there is no cure only Ibprophen. They said I had Endo, cysts severe bleeding and pain and come to find out they put me on Birth control pills they do slow the symptoms. But they also caused a flare up of something else that I didn’t know that I had… Fibro- Cystic Breast Disease. The ultra sound literally looked like cauliflower and they said that if it flared up again I would have to have them drained!
Good Luck Ladies I am now on my third trial of birth control and have been bleeding now for almost 2 months.
I have been experiencing basically all the above symptoms for the past 11 years. Right now I’m in bed in lots of pain. I don’t eve know how to position my body. I have been to over 10 docs already. Recently I was recommended to a gyno and he mentioned stuff about endometriosis. No other doc has ever mentioned it before so I am going to do the surgery to confirm it. all the pain killers they gave me did little or nothing to my pains. they r just unbearable and frustrating.
Hello,
After a year of lupron/switching to zoladex & add back therapy I decided to try the pill again. So far I’ve been crampy and in more pain. It’s my third week on it so I’m trying to give myself a little more time. I’ve also started to notice that my weird throbbing/bruising feeling i have in my bowels has returned. I thought after surgery and lupron for a year my pain would not be too bad. Has anyone taken anything naturally to help with their symptoms? I just took today vitamin d, magnesium citrate, and will be starting fish oil for the first time. I’ve read about it in my endo book and have also researched it a little online. Also, another question, does anyone have chrons or IBD that was played off as just ibs? I got a colonoscopy awhile ago and they said it was just ibs but i feel like chronic diarrhea everyday is something more than just ibs. Also i swear i have a fistula as i feel like i’m passing gas from my lady parts which is only a result from IBD and not ibs. I’m way too scared to say anything because my last gyno told me if it wasn’t physically obvious then i didn’t have one, even though the symptoms are real and persistent. I don’t know what to do and who to seek out if my own gyno won’t listen to me/thinks i’m crazy. Do i see a gi and tell him/her these problems?
maria when you talk about gas from your lady parts it, it could be a symptom of a gas producing bacteria causing bacterial vaginosis or bv. it can cause pain and vaginal odor and itching. sometimes i get pulling pain in the groin. it is easily treated with a cream.
Has anyone been taking things naturally for endo? Like fish oil, vitamin d, or magnesium? I read in my endo book and online that this is supposed to help, although who knows what difference it makes. I started birth control again after a year of 2 surgies and lurpon injections and thought the pain wouldn’t be bad but these cramps are very annoying. Does anyone with endo have ibd? I was diagnosed as having ibs from a colonoscopy 3 years ago but diarrhea everyday doesn’t seem like ibs. Also with bowel moments is pain in my lady area & I swear sometimes when passing gas it takes detour and comes through my lady parts. Every time it happens I’m super alarmed. I brought it up to my gyno who said if it’s not visible to her it’s not there.. I don’t know who to go to about this.. A new gyno? A gi? I can’t believe I was brushed off when I shared something so embarassing. I feel like she thinks I’m searching for reasons to have problems like what she originally thought when I had endo and complained of it. Anyone have any advice?
I have had miserable periods as far back as i can remember and pain about 3 weeks of the month. I also get small ovarian cysts. I have had surgery twice. I was finally able to have a beautiful healthy baby girl and she was born on new years day 2011. I was just a few weeks shy of 39. After her the pain was almost nonexistent but the past couple years the periods got heavier and the endo is for sure back. The leg pain is really bad this go around. I don’t want to get on the pill at my age. It’s too risky. I’m torn over an ablation just because of what it means.
I had my surgery last year , June 2014.
After I was prescribed to take pill.
I decided to stop taking it after three months of driving me dizzy all day and just feeling weak.
But any time soon , I will see a doctor again, why? The place where they cut me hurts and during my period- pain is back but not as bad like before I had surgery.
I’m hoping its not another form of endo or whatever. Does anybody here had the same? Thank you
I’m so thankful for this article! I have endometriosis and it makes me feel like a different person!! People just don’t understand how crippling and emotional draining it can be. I’ve had friends accuse me of avoiding them, but really I’m just so tired and in so much pain. And the hormone shots I take to control my period…whole other nightmare!!! It’s so relieving to know that others understand what I’m going thru! Thank you!!!!
Now in my first year after my surgery back June 2014. But need to see a doc the soonest. 🙁
Does anyone ever have successful treatment for endometrosis? I’ve just spend over an hour reading about unsuccessful treatments. There has to be some positive stories out there??
i love the way thats been write.. from the geart and exactly how it is… i am currently tryin to find out what could be wrong with me.. my doctor said it was in my head as i have health anxiety… it started with a niggly feeling round my bladder area at the side near my groin, then my bladder was tender but uti negative.. now the tenderness has gone to touch but i have a burning pain that keeps coming over pubic bone and bladder area with lower back pain… the feeling of the pain and burning feeling by bladder etc is horrible and can be constant.. its stopped my life.. feeling so depressed cant do anything with the worry of it but my doc dont seem bothered ! i hve very painful periods have done for years . i wonder if it could be endo.. anyone had this ?
Hi, very interesting article. I have endometriosis which was found after I had a miscarriage over 8 years ago. The pain affects me more during ovulation. Affects my sleep and daily chores. Sometimes I can not straighten up when standing up, feels like my internal organs will rip. It will feel like someone is twisting my insides. It is a horrible feeling. I don’t let it beat me, I go to work, and just take things a little more slower then usual. I told my boss that I would be off sick few day’s every month if I let it get to me.
Was interesting reading your article.
Thanks Judith
I found this very helpful. I am a 39 yr old Mother of 2 beautiful girls. I had a hysterectomy just about 5 yrs ago.. November 10th will make exactly 5 yrs. When it all started I went to the ER one night with pains in my lower left abdomen.. After an ultrasound and a transvaginal ultrasound they diagnosed me with endometriosis and I was sent to my gynocologist for follow up. The weeks that followed led to numerous biopsies and tests. Long story short.. he determined that yes, I did indeed have endometriosis but I also had “very micro-invasive cervical cancer”. When all was said & done I was left with only my ovaries and within the yr that followed I realized I was still stuck with the original pains in my lower left side that sent me to the ER to begin with. In the past few yrs I have experienced this sporadically. It is never pleasant and I try & deal with it the best I can. Like I told my doc.. the pain is not unbearable but it’s extremely uncomfortable, unpleasant, and interferes with some daily activities. This past week has been the worst. The worst pain I’ve had in the past 5 yrs and up until a week ago I hadn’t had any of these episodes for well over a yr. It’s very worrisome. I always worry something very serious is wrong with me. My doctor thinks it is the endometriosis and I have an appt with my gyno on Nov 3rd. It’s still lower left abdominal pain for me.. that sometimes goes down into my upper left leg and also sometimes causes my lower back to hurt. It sometimes feels like period cramps.. yet I haven’t had a period for 5 yrs now. Change in position helps sometimes and I’m just wondering if anyone else experiences some of the same things as me. Btw.. when I did still menstruation my periods were always heavy and came with a lot of bad cramping. The only time they were not heavy or bad in the cramps dept. was when I was on birth control.
Yes I have all of the same problems. Still trying to overcome it after years!!!! I only have one ovary left and I’m 28 but the doctors think the endometriosis is on nerves and other organs causing pains. Endometriosis can be anywhere In The body. Some woman have even had it in their throat!!!! I found that shocking
Reading this helped me as I thought my pain in my back and groin and tiredness were different things but now learning they could all b linked to my endometriosis which the pain in my lower tummy is getting worse
I was diagnosed with this disease last year and still till this day it is hard living with this disease and what I miss the most is playing with my children and my daughter knows when mommy is not feeling good and I just hope that she doesn’t get this disease and suffer the way I suffer. And plus I also am dealing with depression and anxiety and that makes it worse knowing that I am dealing with this disease and still some doctors out there don’t understand you so they just do t know what to do or they just don’t want to work with someone who has this disease cause they don’t understand it. Then they think you are there just to get painkillers that’s it. It really sucks to express how you feel and they don’t understand I wish they would experience the same disease we have and see how they feel cause they would hate it.
I had an ultrasound but it was at the end of my period to check this out but they said nothing was wrong. I had a csection about 13 months ago. Every time I get my period, it feels like the csection scar is ripping on the inside, on my right. I don’t know what it is causing this but I would like to know and how to treat it. It is excruciating pain and Tylenol, advil, and other medicines like that do not help. And cramps and moving makes it hurt worse, but it is a constant pain only when i get my period and lasts till a week after. But then goes away until my period comes back.
I got this terrible pain for years I think I didn’t get periods yet but suppose to be on 15 today its 20 I’m 31 years I’m willing to take steps I thought it was just pains that come before period but I see now this is serious can I get help or do you kwow any Doc who can help me or Gynecologist we were thinking of INV fertility
Hi have stinging burning pain under rib cage nausea very lightheaded
I am 42. Pain started in lower right side of my back. Very sharp stabbing pains, that came and went in waves. Eventually spread down and around my right side now affecting my back, side, groin, ovary, and now my thigh and upper leg. Had MRI, X-ray, Cat Scan and blood work all come back normal. Awaiting ultrasound results now. I have always had heavy, painful periods. This pain is overtaking my life, and now I have vertigo almost all day. Hot flashes, and so what blurred vision. Also I have been experiencing shortness of breath on occasion. I feel strongly that this is
Endometriosis. I need someone to listen to me and not let this get out of control and be my silent death. Please inform me
I’ve just been diagnosed with adenomyosis and possible deep endometriosis after 5 doctors and 2 years of suffering. Scheduled for a hysterectomy in December, and removal of any endometriosis the doctor finds. I’m really scared if I go through the surgery it won’t help get rid of my back pain, leg weakness, fatigue and GI issues
Hi all, last march I had scans full kidney and stomache scans as I had bad periods, belly pains and kidney pains and they couldn’t find anything on the scans, my doctor said I probably had endo, but only a lap would diagnose it, I chose not to and too try some remedies first, I had the coil fitted and the problems seemed to quiet down. The last couple of months I seem to have gotten worse, I have constant leg ache, my hips ache and my pain around my kidneys, this is really getting me down again. Somitblooks like back to the doctors for me again. 😢😢
I am 31 years of age and recently been diagnosed with endometriosis and considerably large amount of this too. I have been having laparoscopy after laparoscopy for past 7 years and painful periods for last 10 years got told nothing was wrong. I went to my gp and demanded a hysterectomy he asked why? “Well I can’t get pregnant I have heavy very painful periods and you tell me nothing is wrong, ok then we’ll remove my womb” I replied. Shortly after another letter came through the door you are poked in for yet another laparoscopy and a hysteroscopy not hysterectomy,,,, to be told I have very bad endometriosis,,, finally 10 years later a result and the same result I knew was true along. Very heavy periods, painful intercourse, bad lower back, ovulation pain and problems conceieving yes I sure got what I knew I had. Living with this pain is horrendous it’s as if you have been kicked in the back at ththe sometime someone is sneezing your guts as tightly as they can. The tiredness causing you to be irritable , the fight for the baby you will probably never get. Anyone feel they may have this disease please get checked and do t get sent away like I did
I have had endometriosis since I was 16. I am now 27 and it is getting worse. I was diagnosed with overactive bladder at 23, which, my doctor thinks is associated with the endometriosis, due to the pain. Which, I agree with this 4th doctor because the more pain I’m in the more I have to urinate. My symptoms just keep getting worse as i get older. I Even experienced the pain while I was pregnant with my second child. More recently, I have been told that I should either get on birth control to help and take ibuprofen regularly or get my uterus burned…. lovely options… blessed to have my two beautiful kids and I’m thinking it’s time to start the surgeries because my symptoms now are:
-pain in the abdomen and lower back
-hot flashes
-fatigue
-nausea
-feeling like everything is getting pulled out of me
-feeling like I’m gonna pass out
-dizziness
Thank you for this article. I was diagnosed by a lap in July 1998 after spending month after month in pain. In high school I thought I was just a wimp when my friends were all able to get through their periods with no complaining. I taught myself early on to keep the pain to myself. After my diagnosis it was as if a light had been turned on. It all made sense. I was 20 & my doctor recommended the Lupron injections. It was the worst thing I could have done. 6 months of injections that had so many side effects. I was 20 going through induced menopause…and it didn’t work. I suffered emotionally. Depression hit me hard. I am now 39 and I still feel like no one understands what we go through with this disease. For 10+ years I was on the pill for management, sometimes forcing my body to go 5-6 months without a period. Then I always scheduled my vacations when I did get it. Currently I am not using anything for pain management except Midol and we all know how useless that can be (and heating pads. I love the Thermal Care) . I refuse to go back on the pill because I do want a child. I have no kids ( never really tried) but I did have a miscarriage 4 1/2 months ago. First time I found myself pregnant and it was the happiest time of my life. Of course it was quite a fall when I lost the baby at 11 weeks. I have struggled for 20+ years and will continue to struggle. Best wishes to all going through this.
I am 41 & have had pain since I was 15 but for the past 5 months I have pain during ovulation & spotting; and for the past 2 months I have pain about 3 weeks straight- in my abdomen, bladder area, left hip & leg & pain in my intestine area, pain when I use the restroom.
after seeing 5 Obgyn’s I finally found a wonderful caring male dr who is determined to help me by first having the diagnostic laporoscopy to diagnose if I even have endo. And if I don’t have it he will do biopsies on findings. I am nervous & hopeful at the same time b/c I am ready for answers.
I pray someone will do research to help women with this terrible issue.
Hi, thank you for this- it actually had me in tears. I am about to have a laparoscopy in a few weeks and have seen a specialist today. It has taken more than ten years to get my GP to refer me. I just live in agony and your words below absolutely sum up how I have felt for years. It has become progressively unbearable the last two years and I cannot remember what life is like without the back,hip and pelvic pain. I am woken every night with burning hot pain.
‘The pain caused by endometriosis haunts you both in sleep and in waking, tiring your body and causing chronic fatigue.’
My doctor told me what I feel is ‘normal’ and ‘common’ He then said ‘You probably walk too much’ in one breath after trying to understand the back pain I suffer- he then said ‘oh you need to exercise more’ because I couldn’t lift my legs high enough during the examination. By this point I was in despair, he said ‘You will have the menopause in a few years so it will be better’ i am 41, fit and healthy if you take away the symptoms- I walk everywhere as I choose not to drive, do not smoke, take drugs or drink. I don’t expect the menopause anytime soon and I have been visiting my doctor for many many years telling him I am in agony. I had to beg in tears for him to prescribe painkillers in the past as he was reluctant to do so and then for a referral, he said ‘They may not even see you’ Within four days I had a call from the practice and then within three weeks an appointment. I saw the specialist today and he was wonderful and immediately suggested endometriosis after checking my history. I am now hopeful for the future and so thankful to the new doctor.
I feel your pain! Its 4:30 am and I woke up at 3 with burning back pain & it radiates through my pelvis and legs. Did you have your Lapo??
Hello there! I am so glad I found this website. I am going in for lapo on Dec. 29th. Finally, I had a gyno that listened to me. I am 30 years old and have dealt with horrific pain for quite some time now. I also get ovarian cysts, in which my primary care never thought much of. I was desperate to find answers. So many doctors treated me like I was a hypochondriac. Maddening to say the least. I am hoping the surgery will give me hope to figure out what else can be done. I am absolutely miserable with the pain and now out of work due to it. It literally has ruined my life this past year. The back pain feels as though I fell and bruised my tailbone. Thank you so much for sharing your story. I feel your pain and totally understand. Can you tell me more on what they do after the lapo? Am I looking to have to go through more surgeries. What options have they given you? Any insight would be so helpful. Have a Merry Christmas and I hope you and all the women posting on here feel better and stay strong!
I’m waiting for my next surgery date. I waited for 10 months to see my current surgeon, she has come highly recommended as being an expert on endo. I have had three other surgeries. My last one removed my right ovary and scraped away “dense patches of endometriosis”. This time my surgeon is going to remove my uterus and my left ovary. She told me that she needs to do this by laparotomy, which means an open 6 inch incision and the other ovary has to be removed otherwise the endo has a good chance of returning. The open incision will allow her to look for all traces of endo implants for a better chance at a successful outcome. The date is sometime in the next six months. It’s agony waiting, every day, through the night the pain is there. The pain meds dull it but doesn’t take it away. I need to convince myself that it’s normal to be in this amount of pain to get through each day. I’m so looking forward to this surgery and having a life with no pain. It’s almost too much to wish for. I’m scared that it won’t work.
After reading this, I am in tears. I’m in the worst unbearable pain right now and I’m starting to almost believe there is no hope. I already had my laparoscopy in October 2014 and apprentently there was no endometriosis after my specialist and her team were over 90% sure that it was. I have been seeing a pelvic physical therapist once a week for over a year and ecently stopped as my insurance doesn’t cover the $600 a month I am paying for it. I feel as though all of my doctors (neurologist, urologist, Obgyn, gastro., holistic doctor, specialist etc.) have thrown their hands up and have practically given up on me. The pain is crippling. It starts in my abdomen goes down my legs to the tops of my knees, up the back of my thighs, up my butt like lightning bults and covers my entire back. I have these “grape like” cysts(?) that form right before my period under my underarms, on top and below my breasts that hurt tremendously and keep me up at night. They do usually go away a few days after my cycle begins. I am beyond exhausted and tired. It has effected my career, friendships, family, and relationship with my boyfriend. The percocets (which I hate taking by the way) barely even cover the pain that I end up practically taking 10 a day for a couple of days during this time. I almost have no choice because I can barely stand to my feet. I am starting to fade and lose hope. Does anyone know of anything else I could do to live a “regular” life? Thanks in advance!
I was diagnosed with endometriosis 15yrs ago after an hsysterecium and constantly have flair up pain in my lower back like I’m having labor pains hip thigh and knees theyve been inside me so whatever this error is the doctors already know how and what to do to calm it down I took 1 ibuprofen 800 3 ibuprofen 600 and 6midols at 2:27am 11/21/15 it finally calm down and the pain started in my sleep 11/20/15 6am when my alarm clock went off. It’s not fair but I can’t fight with these people when GOD is ready for me I’m ready too this pain is so uncomfortable
I was diagnosed with endometriosis a month after my wedding in 1974. I had just moved from Oregon to South Carolina, and I was 24 years old. A hysterectomy was advised. Three years later, my new gynecologist, who was my life saver, performed a laproscopy and discovered the terrible mess that encased my reproductive system, was attached to parts of my intestines, and adhered to my back. He removed as much of the tissue as possible, but informed me that I did not pass the dye test. My ovaries were twisted and adhered to the back of my uterus while my fallopian tubes were twisted and attached to the front of my uterus. It was unlikely that I would ever bear my own children.
I ran and trained through my constant pain, which sometimes freed me from it. Then, at 29 years of age, I became very ill, so I went to my doctor. I was pregnant with most likely an ectopic pregnancy. We waited over the weekend, and I returned to my doctor and specialists early Monday morning. The examination showed that my little embryo had made it to my uterus and was implanted there. I immediately fell in love.
I was constantly sick throughout my pregnancy, but I delivered an 8 pound, nine ounce boy vaginally.
After giving birth, I had six more laprascopies, holding onto that thread of hope that I would conceive again.
But I never did. My son is testament to the amazing power of the female body: I just needed one egg to find it’s way through the convoluted mess of my reproductive organs, and he made it.
The thing that young women need to be aware of, that I had no way of knowing, is that endometriosis is not just about the excruciating pain. It is also about the havoc that it does to your immune system over the ears. Do your research. At 49, I had a complete hysterectomy. I was very unhappy for a few weeks, until my life became nearly normal.
In just under 2weeks with be my 3rd surgery in less than 10 years. If I could go in today I would. I hope this next procedure will hold me over for at least a few years. I’ve been on hard core pain medication for almost 2years. I want my life back. I want a cure. I wish I could just have a hysterectomy, but I know that will not cure it. Pain meds just help a small amount at times I feel nothing works. I try to meditate but at times I cannot remove my mind from this pain. My poor husband is the best care taker it hurts me to have him see me like this. Last surgery my left ovary was attached to my colon. I have the exact same symptoms so they think it’s back. Having to pass gas or use the bathroom is so painful. I can’t do anything I can’t even sit and watch a movie. I would give anything us to feel better. I have all the none pain symptoms. I’m so tired and want my life back.
Hi Jane
I suffered for 2 years with constant pain in my lower abdomen, legs and back, I lived constantly on tramadol cocodamol and diazepam until the 5th of this month where I underwent a full hystectomy – who says a hystectomy is not a cure no one knows exactly what goes on in women with endometriosis but I can tell you that I experienced the worst time of my life living with the disease – I am only 4 weeks post op from a full vaginal hystectomy on half the tablets I was taking and feel like a new woman no more constant pain – I pushed for a hystectomy as I have my family I just wanted my life back – it got so bad I was severely depressed and asked my gyne for serious help before I had a breakdown – so far it is the best decision I have ever made – my family and friends have already noticed the big change in my general appearance and personality – hystectomy for me was the best treatment I am having a few hot flushes and can cope with these compared to what I was coping with – I do not want to go on HRT as early menopause symptoms will settle in time – it depends on how much you want to suffer and for how long only you can make that decision but I can say it will be your best decision – good luck.
Hi Elizabeth,
I can’t tell you how happy I was to read your post. I have had three laps done, last one removed my right ovary and a lot of scraping of endo on my pelvic wall. I was essentially pain free for three years after my last surgery. I have had a reoccurrence of excruciating pain over the last 18 months. I am now waiting for a surgery date for a hysterectomy, including my left ovary. I was wondering if I made the right decision. I really appreciate you sharing that you have already noticed a difference. I’m looking forward to surgery and a pain free life. Thanks again,
i feel pain in the right hip when i place there pain seems to be deeper not on the surface,my anus is ever paining bt no constipation,av neva had anal sex what could be wrong with mi??
If feel it deep in my rectum to.
Yes, but my question is I have had a full hysterectomy back in 2005 an now today all of a sudden the pain that I had then has returned. I’m having pain in my lower back an stomach just like when the endometriosis when in my uterus muscle before my hysterectomy. I just left the er an they did an xray which was fine. What to do next?
I am similar – hysterectomy 6 years ago, with one ovary left. I am in agonizing pain today. Feels the same as before…..
So I am probably one step away from being diagnosed. It has been a year of pain & focus on musculosketal diagnosis!! Reading this sounds like I have written it particularly as I have symptoms of back pain & leg pain & dealing with the pain & fatigue whilst trying to get into work . Also it has affected my whole social life & never knowing if I will be able to go out- cancelling plans , doing or not doing things with my daughter. I feel my life is on hold! Hopefully , can get a diagnosis but reading this makes me feel it should have been looked at earlier!!!
I recently got diagnosed with endometriosis and I am in pain 75% of the time!
People act like I am over reacting with the pain and they think “It’s just cramps” and I should “get over it” as my mom put it!
But it’s so much more than that it affects me more than one week of the month. And it’s not just. Cramping pain it’s severe debilitating pain that makes me cry and makes me so frustrated and nobody understands. I appreciate this article because it actually shows the Real struggle. It’s nice to know that other people understand and that you don’t think that I am “overreacting”!!!! The pain is so intense it makes me angry sometimes. I’m in so much pain it makes me angry. I’m on a treatment right now with my doctor to stop my periods to help control the pain. It’s my first treatment I’ve been to the doctors already twice, with breakthrough bleeding and still pain. I asked my doctor if I could get the surgery to remove some of my endometriosis polyps to help control the pain. She insists I do one more round of treatment before she approves the surgery. But unfortunately even with the surgery there’s still no guarantee that I will be without pain.
I’m sorry that people tell you (your own mother!?!?) to get over it, and that you’re overreacting. I, too, am in pain 50% of the time and I know it’s awful and definitely no joke. Be strong and I hope you find relief soon.
My doctor advised me that I either have an internal hernia or endometriosis. Waiting on my catscan.. if it is negative they are then going to test me for endometriosis. I was wondering if maybe I described my symptoms, of you could tell me if it sounds like endometriosis. I am hoping not because I do want another child. It all started 4 months or so ago with pain in my pelvic area. Did an ultrasound, came back normal but with cystic like fibroids. Possibly it was my ovulation eggs they said. The pain has come n gone since and even moved up into my abdomen by the belly button and down. It is a cold burning feeling that at times shoots pains into my vagina and causes pressure on my vaginal and rectal region. Sometimes it hurts in my abdomen; sometimes in my low pelvic area, and other times both. It is hard for me to strain to use the restroom and even to pee sometimes. My urine stream is very weak and hard to start at times. I am only 28. Sometimes my vaginal Walls feel as if they are just going to fall out. It has really been hurting bad the last couple of days.. hope you can help. It hurts more when I’m walking or standing. It burns a lot my abdomen inside and I am fatigued all the time. I’m tired of being in pain.
I have been having the exact same symptoms since the end of Dec! It’s June now and the doctors have only just considered endometriosis as a possible cause of my pain…….5 months later! Did you get confirmation that endometriosis was the cause of your pain or was it something else?
ita so bad i wish i was never born
Nadia believe me I truly feel your pain. I was diagnosed 2 years ago after laparoscopy surgery, D&C, bilateral cystectomy, polypectomy and lysis of adhesions . My doctor put me on birth control for a year, that was horrible I had weight gain, acne, and mood swings not to mention Malasma discoloring of my skin which will never go back to normal. We decided on Mirena it was uncomfortable to have it inserted but, well worth it I no longer have periods I used to get cramps but not as severe plus I’m feeling better, but I still take naps even after I come home from working a 6 hour a day job.
I hope you check out every avenue. Get a 2nd 3rd or even 4th opinion. I was happy to know why i suffered from painful periods since the age of 13. I was never diagnosed appropiately. It took lots of research and perserverance on my behalf, afterall you are your own advocate! it saddens me to read your comment because no one understands what we go through. I wish you the very best and please don’t give up!
Thank you for the useful information, I sent this to my husband and put it on my Facebook page because it’s so hard to convey what is happening in my body to people who don’t have endo. I have had severe menstral cycles for my entire life (I’m 29). They have progressively gotten worse, I have had 2 live births (ages 8 & 5) and 3 D&C’s. I didn’t know for certainty that I had endometriosis until my laparoscopy a couple weeks ago. The pain got out of control after being intimate & I started bleeding & then bad cramps had me in the fetal position all night. I went to the ER and they diagnosed me with a ruptured ovarian cyst which hemorrhaged. The pain and fatigue was only getting worse over the next few days. Living on pain killers. No quality of life. Can’t work. Can’t do simple things like mop my floors. Pick up my daughter… We did the laparoscopy about 10 days later, my Dr found blood stagnant in my uterus where the cyst ruptured. Your body is supposed to absorb this– mine did not. There were endo adhesions all over, and on my uriter. She removed what she could with the laser (cauterize). Now after 2 weeks the lower back pain and pelvic pin and headaches are not gone, but worse. Fatigue is constant. My Dr is doing an MRI with contrast in a few hours to see if I need to have another surgery & what we may have missed during the Lapo. I am so exhausted and emotionally drained. Living on pain pills is no way to live. I pray endo has a cure very soon.
My now 18 yr old daughter was surgically diagnosed at 15, starting birth control was the beginning of her endometriosis. She was in so much pain she was in a wheelchair. After her surgery he doctor matter of factly said, ” those cysts are just gonna come back” just what a 15 yr old wants to hear after surgery. So we got on the internet and for her we decided to completely change her diet, nothing I mean nothing artificial, no processed sugar , no dairy. Fresh vegetables, fish, hormone free chicken, slowly she began to improve and she started yoga, then she was able to begin cross fit, she can’t do some stomach exercises and her diet is not as strict as it was at first, but she is so healthy and has begun college at UCDavis ….we told her gynecologist how she was able to recover, he was not interested, so disappointed that he was not willing to share her transformation with other patients, I know this won’t help everyone, but if even one woman sees this and it helps her suffering, well you guys know, it’s unspeakable the suffering she was dealing with, and if you have no one that understands? I hope this helps someone …it did my daughter…take care all
Thanks to you and your strong daughter I went to trader joes tonight and bought all organic peskatarisn food, and I look forward to the future be less painful! I truly hope this works!!!
Let me know how it goes! And thanks for responding, the rule was if she couldn’t pronounce the ingredients then it was a no.
Processed sugar and caffeine completely cut out for 3 months, she is doing so great! She’s in college at UC Davis and she’s healthy no cysts, she can’t wear high heals , they make her sides hurt, so do sit ups , but she’s doing good, good luck I hope it helps you.
Donarae
Thank you so much for your post!
I have been interested in changing my diet to see if that helped at all, and no I am for sure going to try it!! Thank you thank you
After having four beautiful children but always having really chronic period pain and heavy bleeding all my life it was just the norm but after having baby number four periods became worse over time and as he turned four I was bleeding a month at a time not leaving the house unless really had to then having to shower and change just because I’d picked the kids up from school was a joke the pain was unbearable in my bum lower back and underneath was like I’d been repeatedly kicked anyway every time I saw GPS they fobbed me off and told me I shouldn’t be experiencing that at my age I was 29-30 they then agreed six years ago to give me an abliviation of the lining of my uterus which stopped the bleeding altogether but not the pain so four years later after lots more complaining they referred me again and my gyno consultant said well you will be in pain as your pain is were your bowl and ovarie are stuck together and yes they knew this for five years before informing me so referred me to bowl specialist who did lots of tests and found a lump removed it within five weeks and confirmed it to be endreometryosis another year gone by in pain and gyno are taking me to theatre next week for first surgery to see what they can remove yipee it’s took over six years of been ignored and passed from bowl to gyny feel like I’ve been ignored so much and want to tell you ladies hassle doctors and specialist this is a horrible disease to have to live with and people who haven’t got it don’t understand that we suffer in silence and try to get on with every day life but as I call mine flare ups and bad days are excruciating and restricted me to not enjoying every day life I on the other hand am very lucky to have had four children and know that not everyone is that fortunate but it has took so long to be heard good luck to you all x Tracy from HULL
Hello my name is Louise I got diagnosied with endo when I was 20 after my first child Im now 30 years old and have two boys one 10 the other 3. I was told after my first I may find it difficult to concieve again but lucky for me Ive managed to boys. I was told by my doctor it may be best to go back on the injection little did I know that it could highen the pain from endo so I came off due to doctors advice. The pain is so weird sometimes because of how irregurlar and different my pain is I get scared that its something new wrong with me until I went through bout twenty web sights on endo that all describe how complex and different there pains and sytoms were and how difficult it is to explain. Endometriosis is one of the most painful things ive gone through in my life and believe Ive been through alot prison, serious drug addiction, being homeless the list goes on. But this is one of my worst because everything else Ive over come but this goes on. My relastionships have been tested time and time again because I cant explain what I have then some people begain to question weather or not endo is real. I lost my sex drive for two year throught the pain and confusion and even when I did have sex it was painful. Sharp pains in my legs, knees, hips, back this could be separate or together. Sharp pain in myfeet leading up to my leg then into my adormain, headaches, leck of sleep fatigue eatting habbits go up and down mental state goes up and down and the list goes on I hope they find something the future to help women get through this and ave better understand of what endo is I hope Ive help by just telling you my truth x
Hi I have stinging tearing feeling in chest wall nauseas very dizzy can it be endometrioses
Thank you this was so helpful to read. For years I had undiagnosed Endometriosis and Dysonommera only to be fobbed off by doctors as being “mental” just because I had Aspergers Syndrome, (somehow being on the autism spectrum makes you a hypochondriac when you’re not), and only just found out last month when I was finally sent for a follow up appointment by my GP following a laproscopy. The endometriosis has since been removed but it wrecked havoc on my life, causing depression, and high anxiety. I also used to get pain into my leg and your article explained why, I never knew it was my sciatic nerve being affected. My life has been so much easier with it being gone, and I feel so validated that there is nothing mentally wrong with me, I only have a nurological condition and had a hidden illness. Thank you for your information and God bless.
I’m starting T (testosterone) to switch over all my endocrine functions to run on this hormone, thereby eliminating most of the estrogen, progesterone, and associated female hormones from my system. I’m not too far past legal drinking age and I absolutely refuse to be a victim of this whole “took 200 Ibuprofens, had 20 laps, 2 hysts, had a bunch of cysts, dying” standard narrative because as I can clearly see, our doctors/medical science are FAILING to address the problem, my body is failing to function in a way that doesn’t destroy my life, and I don’t want the rest of my life to fail as well.
Considering going the full transition for the cognitive and emotional benefits.
I didn’t quite understand what you mean?
That sounds promising! I hope it works. Keep us updated on how it goes! 🙂
I had Endo stage 4, hysterectomy 6 years ago – leaving one ovary. I have recently gained 10 pounds of “fat”… I woke up this morning with the same old stabbing, bending over, relentless pain. After several rounds of ibuprofen – I got back to sleep. Made it to 8 pm and it’s back. I am almost certain it is back! Did a bit of research and estrogen aggravates it – since I have gained 10 pounds of fat very recently – does anyone think this was the trigger?????
I posted on here a few weeks ago, and have been reading all of your stories. Since my laparoscopy on 12/2 my abdominal pain has lessened, however the lower back pain has not at all. My OB ordered an MRI, which showed I also have Adenomyosis– for which the only “cure” is a hysterectomy. The last couple days have been so brutal back pain & headache wise.. Restless legs & feeling very crampy and bloated above my pubic bone. I know that the Endo spread onto my bladder & on my ureter, I’m peeing so frequently & always feel like I need to.. As of now we are trying to get pregnant, praying I can have one more baby before having a hysterectomy. I am so exhausted and constantly on some kind of pain medicine; I just don’t feel like me anymore and it’s a terribly feeling. Trying to ease back into working and get out of my house and get my blood circulating. It’s hard ladies! But God willing, we will get through this!
Hello, my name is Bev and I’ve suffered with endometriosis for 20 years. Iwas diagnosed 15 years ago. My pains have always stayed pretty consistent where I would have the most awful pain for the first 2 days of my period then that would be that, until the next month. I was lucky enough to conceive first time and gave birth to our daughter 3 years ago. Pregnancy was very painful for the first 5 months and I had zero energy, but she arrived safe and well. After her birth I bled constantly for 1 weeks, the pain was also dreadful. After pregnancy my periods returned back to normal with the pain on the first 2 days. A few months later I started with ovulation pain – oh my goodness it was on par with my normal period pain, all in my pelvic area. 12 months ago my pains started lasting longer and also would happen randomly anytime during the month. This has been a nightmare because I have had to plan my life around my periods for 20 years, but now the pains just happen anytime. 1 week ago I started with very bad low back pain. At first I thought it was trapped wind. The pain also started in my tummy and sides. I am in agony. I had an ultrasound scan and MRI in September which was all clear, but I’m tempted to have another just to check theres nothing else funky going on with my ovaries. This back pain is new. And because its now a constant pain I have been getting myself a little paranoid. Anyway, I’m due to see my gynae in feb and I will ask to have Zoladex. That’s the only time I actually feel ‘Normal’ is when I’m on that treatment. The gynae is reluctant to let me have it, but I need some relief. Its so hard trying to hold down a full time job and be a mummy to a young child when living with daily pain. I’ve tried to resist taking cocodamols, but todays I’ve had to succumb and dosed myself up.
The fatigue is bloody awful too – most mornings my head is mushy til about 10am. I don’t know how I manage in work. I cant even string a conversation together.
Fingers crossed my gynae lets me have the zoladex. Bev x
I have got fibroids the biggest is 5.5cms and 3at 1cm i had lapo in feb had depo injections for 6months and fibroid did shrink now grown 1.5cm in 5months in so much pain on naproxen twice a day effecting daily life had enough i work 6days a week and had to reduce my hrs due to pain also had a accident had a torn achilles still worked for a month before hospital put me in boot so have a high pain barrier but this pain is affecting me getting me down
I have endometriosis and I’ve had laparoscopy surgery 6 times for it. I’ve not had any relief with my last surgery and my pain is mainly on my left side. I was wondering if just removing the left ovary would help any or at all??
Went to hospital yesterday doubled over in pain.they did blood work,pee in a cupand also ct scan with dye..came back to me and told me that can find nothing wrong with me..so im at home in pain..missed 2 days of work so far..this article helps alot..dr.appt soon will discuss with her..thanks
I am so mad for you!!! That happened to me THREE times!! I know what you’re going through! Make an apt with your gyno and ask the dr to treat you for endo!!
Just curious. I have a been an endo sufferer for many years. I’ve been through the laparoscopy, ablation, etc…I’m now scheduled for hysterectomy in 2 months. I’m having what I believe is an endo flare. Although, I can’t believe endo can cause this much pain. It has subsided, thankfully, but it is still there. Is anyone’s endo ever painful to palpatate? I can barely push down on my left side. Nor, if my laying down can I just sit up. It is so painful. I have to roll to the side and sit up. Does anyone else experience this?
As I read through these comments I am becoming more and more sure this is my problem. Just picked up my Rx for birth control. Hopefully it helps. I’m 37 and have 4 kids. No actual diagnosis yet, mostly cause I have put off going to the doctor. Finally doing something about it now! But, my question is, can someone describe the back pain? Where and how bad… Mine is mid back and horrible. I also get the hot stabbing pain in the rectum area and pelvic area. The pain is so bad I just curl up in a ball and wait. I can’t function when the pain hits. Thanks for the comments above!
I have back pain. Very deep in the middle of my lower back generates out to my hips. Constant sharp pain. No position relieves it. Too deep to get relief from massaging it. I get stabbing shooting pains in the rectum area too. The endo behaves very similar to ibs. I also have chronic diarrhea and fatigue. Took 10 years to get a diagnosis. I had everything removed but my ovaries and the pain came back in less then a year. Gyno said the endo grew back. Still in pain. I am currently 43 and debating if I should remove the ovaries and go through menopause just to try and get my life back. I am always in pain and tired and am currently suffering with depression now.
This was more than helpful. I have never read anything that describes endomitrios so well and eloquently. I have been suffering for more years then I can remember and have never really understood this weird disease. I would like to thank you so much for having this website that explaining everything so well without any medical rubbish. Thank you thank you
Ladies, I’ve just been diagnosed with adenomyosis which is where the endo grows into the wall of the uterus. This explains my worsened and 24/7 pain. Maybe some of you may have this too. I had an ultrasound which diagnosed mine. Sometimes its tricky to diagnose though until after a hysterectomy.
It is something my surgeon also suggested to me as the cause of my enrelenting pain. I also have fibroids within the wall, and no bleeding. Still waiting for my surgery date and trying to find something positive each day so that I can find a way to cope.
Wow. Love this. I don’t feel so alone. It’s not even something I can easily explain to my husband.
I have found two ways to deal with the very advanced endometriosis that I’ve lived with for 15 years. Aspirin based pain killers as soon as the pain starts. Dr says it works by cutting inflammation. I’m always cognizant that aspirin is hard on the stomach but so far so good.
The other one is Zoladex – absolute heaven! It puts you into a temporary chemical menopause apparently. After I took it I had no abdominal pain. Dr has warned about long term use ( I think risk of early osteoporosis) but I’m really thinking about it because my quality of life has improved so dramatically.
Obviously I’m not a Dr but thought maybe my experiences may help.
Thanks for the web page – very good!
Hello, I have just turned 22-years old and am on the way to seeing my THIRD doctor. The first set of doctors were an absolute joke, they told me the pain and excessive bleeding when trying intercourse was “normal” because I tested negative for all STD’s/STI’s of course. I eventually left them after two visits to the ER, when the pain became unbearable and so bad that I was running 102 degree fevers. The second emergency room visit happened during my cycle a few months ago, when I passed what looked like endometrium tissue (the doctors assumed that what it was because I obviously was not pregnant and didn’t read as having miscarried). The doctors at the emergency room were very gruff with me, and sent me home displeased and still crippled with pain.
I have had a few ultrasounds that didn’t register anything particularly “interesting”, but my family is starting to assume I have endo.
Is there any advice I should take when speaking to this third doctor?
My pain comes and goes, but when it is around, it can stick around for a very long period of time. I cannot leave the house when the pain decides to pay me a visit. Plus, my partner and I cannot do anything intimate because I bleed so much afterward (I’m talking about DAYS afterward). Not to mention to pain of attempting intimacy, that I didn’t have a year or so ago or the bowel trouble. It’s all recent and getting worse each month..
I just feel drained, and I’m hoping I will be taken seriously. I’m young so, the previous doctors spoke to me like I didn’t know what a period even was! That pain, that makes me so ill I nearly vomit, and run fevers is how it’s “supposed to be”. If that’s the case, then I don’t know how much more of this I can take?!
OMG!!!! This so explains my life! The pain has been getting worse the older I get. I’m 46 now not sure if it’s peri menopause or my endo getting worse. I have never had kids, pregnant once but miss carried after 13 weeks. Now I just want all my insides gone so I don’t have to live with this pain.
#update Hey ladies. I posted a couple ofweeks ago saying howi started with constant back ache and tum pain. I had an ultrasound and the sono suspects adenomyosis. I’m waiting to have zoladex. Can’t wAit x
Has anyone else had the pain and pressure when u sneeze, cough, laugh etc as one reader mentioned?
I think im getting endometriosis. My sister had it and took her like ten yrs to finally have her daughter. My sons four. Bt the past3 mths excluding december i had no period/chimical/mc, ive noticed pain during period for atleast first two days, always pain starting sex but may be because im not all opened up n lubed u kniw for sex. Anyway, ive noticed feeling the bubbley stuff n my belly and down by my c section scars habing that tiny tap bubble feeling. I thot it was a weird cryptic pregnancy and now im thinking after researching symptoms alongside bleeding, it may be onset of endometriosis. I already own evening primrose oil, as i sugfested it to my sis a bit before she found out she was pregnant. And now im taking it to try to help conceieve and possibly releive some pain…..
I’m 31.. suffering from Endo since I can remember. I finally switch GYN’s and had my first surgery in 2013 and then a second in 2014. I’m debating having another one. The pain during my periods is unreal. I’ve never given birth, but people laugh when I say it must feel like this. Nobody knows how awful the pain is during the month. Not to mention the flow. On top of that, my husband and I are trying to get pregnant and I Think the endo is affecting it. Does anyone have any experience with getting pregnant and endo? I wish much luck to everyone suffering from this awful disease.
Hi
I put in Google all my symptoms and it came up with this.
I’m in a piggle at mo it started with my lower back then to middle of back, I found it hard to breath, then I got constipated and will admit I tried all things going , sort of ok but got piles now inside .
The pain is only in lower back today.
I was just laid in bed and got lower abdominal pain and to say I’ve had my Fallopian tubes blocked as sterilised keep getting aching pains from them ,
And I’m going through early menapause and to top it of my smear test came back with cell changes so having a gynaecology this week
So my brain in over time mode
I have had this severe constant pain and 20 times worse around period time but no diagnosis! I’ve had a historic to my but left my ovaries! And still experience this constant pain I’m going crazy with all the meds and Dr I feel don’t think I have a pain problem I’m so exhausted! My gynecologist when did historic said she found no sign of endometriosis is it invisible because these are my exact symptoms? ??
In Excellence,
Kenzie Barrett, RDA Field Sales Consultant Cell: 760-715-6693 http://www.HenryScheinSanDiego.com
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I had crazy pain for months, one of the girls here said they switched to vegetarian and it helped with the pain. So I switched to pescetarian and with in 2 weeks I had a level “2” pain. With in the month NO PAIN!!!! I suggest you try it! I also started taking milk thistle and Tumerick to strengthen my liver, and that helps as well!!! I urge you to try it!!!
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I had a hyster totally. But I deal with a chronic pain with my lower back and hips it gets ubearble sometimes and worser than a tooth back that never stop a hurting. I’m 50 yrs now .I had my surgery around 32 yrs . I been lucking not to get hook on pain meds. But I’m at the point were I tried everything. I’ve go to have some relate
I had a total hysterectomy @ age 49 which was 5 years ago Ihad endo for approximately 34 years I was on birth control for my symptoms I had severe pain (my doctor described my pain as being as severe as labor pains) I usually felt relative good one week out of the month. I worked, went to college, helped my father approx 30 hours a week with his farm work. At 49 I started having severe pain in my rightside that would not go away. After testing it was found I had a huge cyst on my right ovary. After doctor viewed my film on Monday she immediately wanted to do surgery in Wed u asked for one week delay she allowed a one week delay. I had a huge ovarian cyst along with massive endo that took the doctor approx 45 minutes to read.ove from my body my endo had grown to my colon all if my doctors partners met me because they said that it was truly a .miracle that I was able to function all the years that I did they were truly amazed said that I must be very tough. Don’t mess around with endo or severe period pain I wanted a hysterectomy when I was 26 doctor would not do it because she said I was too young sometimes patient rybknows Best
Hi I’m.havine terrible pain in front of vagina it’s like something hanging down or stuck when I walk it’s also pain in anus constantly my doctor keeps putting it down to anxiety and consipation but I know it’s not on pill as well also bleeding this is a nightmare having to go round like this and no one believieves me
I feel like this too, I think the doc thinks I’m mad, have you been diagnosed with endo xx
Hi, I’ve had dreadful symptoms for the last 5-7 years which I pretty much gave up asking for help on and then finally after what I thought was a kidney infection and fatigue I couldn’t cope with any more that I stood my ground with my rubbish GP and was referred me for blood tests.
My CA125 blood tests came back high and this was enough to have me referred to Gynae consultants. Within 4 weeks I was on the operating table and had a laproscopy and Hystercopy. I was right about the pain on my left side, I had endo on my left ovary and a twisted Fallopian tube. I’m sitting her in a little bit of pain recovering ..the op was two days ago. They fixed the twist and did a D&C to get rid of the endo..well for now.
My question is, I’m 41, surely a hysterectomy would be cheaper in the long run and save me living with chronic fatigue? I am a endurance event, 5 days a week gym bunny with a sprinkling of yoga and I’ve lived this last 6 months like a pensioner because I can’t find the energy or deal with the days pain.
I’m not stopping here. At my next appointment I’ll be standing up for myself, yes a hysterectomy is a great deal of recovery but recovery it is, rather than living in endo limbo.
hi i have ibs and last few days pain is worse comes and goes in back stomach gases when burp helps a while not long it reached that i cantsleep or work stomac did go little but pain comes and goes to scared to eat please i need to know canit be anything else except ibs
I loved the description of the tugging feeling, like you’re snagged on something. It’s 100% how I can feel sometimes. I have to stand and push or lean against a wall with my arms. The pain won’t let me sit or lie down and I become extremely tired and just suffer in excruciating pain. I also had a pain that felt like a stitch. Anyhow the docs and nurses cdnt figure out what was wrong with me. A hundred tests later I finally know I have endo. Now to find pain management tips.
Pain can be insurmountable! I am on so many pain meds bc i have gotten so bad.. I love my dog but he is a service dog and he helps bring me my meds bag or waterbottle from the fridge. He picks up things on the floor bc i have a hard time bending over.. He is only two and still learning. I am trying to relearn how to deal w my life and having Jasper my dog is a huge help. I had nearly given up all hope when my dr told me to stop working (to many er visits) my husband said it was time to get a dog i always wanted and he would do most of the care but he wanted me happy and not at home alone. I dont have children but love jasper like he is one. He has saved my life for now… My liver is starting to shut down and i have a blotchy stomach that looks like stagnant blood … I am now getting scared for my life… I miss when i was able to go to kickboxing after work and hitting the groceries afterward.. But now i have a new life ..its so hard to get used to this
Another friend is slowly losing interest in me.. Not that i can blame then
I started my periods when I was 9/10 and I’ve been suffering from all of these symptoms + more since the age of 12. It’s been 10 years so far of putting up with the excruciating pain each month and having to take at least 1-2 days off work/uni every month. And the weird thing is, I have all this pain all the time, except it’s just there, dull, but once my period is about to hit then it’s totally unbearable 🙁 It’s also awful when nobody understands what you’re going through. Got a doctor’s consultation today and hopefully going to push them to refer me (again) to a gynecologist to have a laparoscopy done since they still haven’t done so yet. I really would like to know whether I have endometriosis or not even though I’ve always thought “yes I definitely have it”. I’ve tried everything. From hot water bottles to taking the pill. Nothing works. Hopefully I’ll get a diagnosis soon and some proper help.
I have lower back ache. Pressure on my bowel, lower abdominal pain, sharp pains down tops of my legs, groin/hip pain. Sharp pain inside my vagina, twinges all over my legs, clotted period, dark brown period, on the pill so not heavy nor to painful periods, occasional acid reflux, pain in my rectum. Im worried it’s pelvic inflammatory disease as I had chlamydia 9 years ago but been tested negative ever since had a ultrasound which showed nothing, painful sex and don’t want to have sex 🙁 awaiting a laproscopy but my gynea didn’t even give me any help 🙁 can anyone help reassure me or advise ?
Did anyone who said they have leg pain ever experience anything with their leg /hip being out of place? Having your leg constantly rotated and hip unable to rotate?
I am going through a bunch of medical issues. I previously worked in a high paced, manual labour job and ended up with bulging discs in my lower back (this has been ongoing for 13 years)
Recently in the last, say, 3-4 years my left hip and left leg have become affected also. My hip feels like it is out of place (causing the effect that I have one leg longer than the other and walk with a major limp) and my left leg is rotated outward. I have been seeing surgeon after surgeon (hip and back) who routinely look at me like I am a hypochondriac, but they will admit that I cannot rotate my hip or bring my leg into a normal resting position. Surgeon after surgeon “says I can’t help you”, until recently. I met a surgeon who says he has no idea what is causing the pain but he out loud admitted what’s going on is not normal and he can’t believe I have been dealing with it for 4 years. I am waiting to be booked for a scope.
During this time I have been asking to rule out all other options ( I am sick of being misunderstood and continually pointed in other directions) I have under gone ultra sounds, blood work, physio, Chiro, massage, diets. Ruling out things such as diabetes, thyroid, sleep apnea and nothing came back out of the ordinary. This is 3-4 years of tests and no answers.
During this time things are progressively getting worse. The pain is intensifying (Most days I can’t walk, sit or l lie down without excruciating pain). Now, the reason I am asking you ladies about endometriosis is that, although most days I am in severe pain, this pain triples when I have my period. The week before my period my leg begins to ache and throb, the second (and I’m not exaggerating) my period starts thats the second my leg becomes rotated outward and my hip feels like it is stuck. this last for the duration of my period and then almost 2 weeks after. I have gone for treatment to a chiropractor to alleviate some of the pain during this time and he eventually is able to reduce swelling/ rotate hip/ alleviate some discomfort but I have noticed lately that without seeing him these same things occur around the same time whether or not I go.
I recently (today) went to a gyno and explained all that is going on. Her first thought is this is endometriosis (which I have had other doctors tell me in the past when I was like 15 but never diagnosed). I have always had horrible periods and terrible cramps but I have always just passed it off as “a woman thing” and I was just being a wimp. The gyno has suggested I get An IUD which she says will “hopefully” cure all my issues. She basically said its a $400 experiment. That or she can give me a form of birth control ( which I have been off of for 8 years and don’t really plan on going back to )
I am 34 years old and my husband and I really want to have kids (haven’t been able to because my DRS advise me my body won’t handle it)
Wow, I am sorry for the novel!!! I guess I am just asking if anyone else ever had the issues I am dealing with. Not just leg and hip pain, but hip rotation and unable to turn your leg inward.
I would prefer to not have surgery on my hip if this could all be solved from being diagnosed with endometriosis. Any suggestions?
Women’s pain issues are often not listen to and brushed off as attention seeking, needy or just looking for pain medication and the older you are the less likely they are to listen to you…
I once had a doctor tell me they are actually taught this in school. He told me this after I was just diagnosed with a ruptured disk in my lower lumbar. He said if I was a man I would be lying in a hospital bed at that very moment on heavy medication…well he did lol…😏
I have lived with endometriosis for most of my life and it has drained the life right out of me….
Not knowing most of those years that it wasn’t just severe ministration cramps, since I had been told by many doctors..
In my case, my endo at its worst it feels like an intense heavy migraine..with a deep burning ache in and around my uterus and ovaries with tentacles encompassing my surrounding organs tugging, tearing then radiating out and affecting my whole body, and my body affecting it like its a living entity….👿👿👿
I have flare ups as well at any given moment it feels like a red hot fire poker is being push deep inside this can last for days…😭😭😭
…And Edno at its best it feels like the pain as you related it.
In addition I have two bulging disks and one ruptured disk in my lower lumbar.
My back on its own..the pain level is immense at times, and very debilitating…
In combination with this living Endo entity, I am racked with pain…and I literally feel that I am being tortured medieval style…😱😱😱
Much like a migraine the pain from endometriosis just makes me want to go in a dark corner curl up in a ball and shut the whole world out.
I also cope with clinical depression from my medical issues and I now realize that I have been living with chronic fatigue as well over all this, And on top of all of that I’m also ADHD so basically I can’t ever get anything done!!😟😟😟
I would always say to my husband there is only so much of me to go around, that I am trying. I realize that this can wear out the patience of a good man. And I have one with very little empathy and compassion. So I am all on my own with this at home.
Many times I have had to cancel out on friends and family events. It makes people think that they can’t depend on me. I feel guilty and I feel sad and it only compounds everything else that is going on with me. 😥😥😥
Thank you for validating the severity of the never ending pain, by posting this online and giving us a forum.
I feel you whole heartedly!!! I have had insane mind bending body reaching pain for 10 days!!! Meanwhile I work as a makeup artist and I am on my FEET for 8 hours a day!!! Walking around and trying to help customers is my living nightmare when my endo decides to kick my ass.
I called out to day because I physically just can’t do it any more! I am resting on the couch in the dark with my head pad on my back and my right ovary until I can get in to see my gyno! It sucks we have this crazy pain and no one really understands, or gives us real validation. 😖😖😖😖
When I told my manager I was taking today off. He said ” don’t do this to me” DONT DO THIS TO YOU!?!!’ What!!! I have been killing myself for you for over a week, and I’m putting you out by saying I can’t take it any more!!! 😳😡😡😡 what the hell. More people need to know about this disease
I feel you girl, praying for you hugs..
My First post was not complete so I updated it.
Women’s pain issues are often not listen to and brushed off as attention seeking, needy or just looking for pain medications, and the older you are the less likely they are to listen to you!… THIS TYPE THINKING IS SO BARBARIC AND NEEDS TO STOP!!😡
I once had a doctor tell me they are actually taught this in school. He told me this just after I was diagnosed with a ruptured disk in my back. He said if I was a man I would be lying in a hospital bed at that very moment on heavy medications. He also said that men do not deal with intense pain as well as women..well he did lol…😏
I have lived with endometriosis for most of my life and it has drained the life right out of me….😩
Not knowing most of those years what I was really dealing with. I was told by many doctors I was just dealing severe ministration cramps and that it was normal.
In my case, my endo at its very worst feels like an intense migraine throb, only it’s in my abdominal area with a constant deep burning ache in and around my uterus and ovaries, with it’s tentacles encompassing my surrounding organs causing the sensation of tissue tearing and tugging then radiating out and affecting my whole body, and my body affecting it like its a living entity….👿
I have flare ups as well…and on any given day of the month, this pain can feel like a red hot fire poker is being push deep inside my pelvis it radiates down my thighs and this can last for days…😰
This description is not exaggerated it’s exactly how it feels.
… I also have a very heavy flow with clotting and have sudden bouts of diarrhea and constant constipation.
In addition I have two bulging disks and one ruptured disk in my lower lumbar.
My back on its own?..Well the pain level is immense at times, my back pain is always present 24/7 and can be very debilitating… In combination with this living Endo entity, I am racked with pain…during a menstrual cycle and it can start well before and continue while after…I literally feel that I am being tortured medieval style!!…😱
Much like a migraine the pain and nausea from endometriosis just makes me want to go and find a dark corner curl up in a ball and shut the whole world out, because I feel so sensitized when I’m going through an episode.
I also cope with clinical depression from all my medical issues, and I now realize that I have been living with chronic fatigue as well over all this, And on top of all of that I’m also ADHD so basically I can’t ever get anything done!!😟
I would always say to my husband after he would get angry with me for not doing the things I need to, there is only so much of me to go around energy wise, that I am sorry and that I am trying, and he would still be angry with no understanding..😥
How can you tell someone you can’t, when you don’t even know what’s really wrong, it ends up sounding like excuses and in my case it pissed off my husband even more. How can you explain that you feel sick and you’re in pain all the time it sounds irrational right??
I realize that this can wear out the patience of a good man….And I have one with very little empathy for pain. Growing up he had a mother who was dealing with chronic painful lupus and she would complain about it to his dad, his dad also being very unsympathetic would get annoyed and ignore her. My husband said it made it so he could not be a very sympathetic person to others, So I am all on my own with this at home.
My lack of activity due to pain and my diagnosed hypothyroidism has sadly helped with being over weight, which doesn’t help anything either. The hypothyroidism also adds to my fatigue and lethargy 😰
Sex what’s that? No really it’s been over 10 years since I had a sex life. I am a very passionate woman, but when all you feel is pain from anything going inside and poking around why do it? I also have an rectocele, if you don’t know what is it’s a pocket between the rectum and the vaginal wall, it’s a nightmare every time I have a bowl movement, and it’s easy to have accidents and to leak after bowel movement OMG yuck..I know gross right? And it’s soo embarrassing..😳
I got the recto else from an emergency surgery moments after delivering my son, I had large distended thrombosed hemorrhoid that could rupture at any moment, along with that, I have a weakened perineum from the muscles being improperly sutured and tearing open soon after delivery and surgery soooo there is no support there either, …..and another reason why sex is painful. My my uterus has also dropped on my bladder and I leak very easy with any pressure, lifting, sneezing, coughing etc. all of this is the exact opposite of sexy so again sex is not on the table right now. I wish it was all gone and I could have a sex life. I would love to have an intimate relationship with my husband it breaks my heart and only magnifies the loneliness I feel. I know many of you out there have the same embarrassing problems as well…
Many times I have had to cancel out on friends and family events. It makes people think that they can’t depend on me. I feel guilty and I feel sad and it only compounds everything else that is going on with me.
Time has only compounded all my medical issues, and I don’t even have all them listed here, but more then enough said to say I am dealing with a lot. I used to be strong, confident and independent, I felt sexy and desired, where did it all go? I am now a shell of my former self and feel very much alone in my own personal hell. On a positive note I have a new doctor and I am praying that all my issues will each be addressed and surgeries will soon follow.
Thank you for validating the severity of the never ending pain of endometriosis and it’s complexity by posting this online and giving us a forum to communicate with each other. Please I would love to hear back from anyone. Send a reply.🤗
I love love love this article! I never know how to describe how I feel to someone and literally this sums it up for me! Thanks so much!
I have been goin through all of these symptoms to the point I shake and hyperventilate and my doctor wont listen to me and im struggling to make it through work each day.I am goin to a new doctor but have to wait I was advised to report to the e.r. but I cant afford a e.r. trip everyday for 9 days a month.
I have been dealing with endometriosis for the past 3 months and it has been hell. I have severe abdominal and back pains and my boyfriend said that I shake and shiver at night in my sleep. I have also had so many lab test and blood test done that could not indicate the disease. I also had to switch gynecologist because my first gynecologist did not want to check me for endometriosis even though I let him know that my mom had the disease and the same symptoms that I had. He just kept telling me it was period pain but I got a second opinion. I had a laparoscopy done to prove that I had endometriosis. This article shedded so much light on what we all are dealing with. I am trying to learn how to deal with this disease day by day. I have been out of work for weeks dealing with the chronic pains of endometriosis and it’s tough when you know what’s going on but your job request documentation from a doctors visits for everyday that you miss and if you miss a few hours I’m still in the process of working on my leave to be approved so that I can be ok.. I wish everyone we’ll because this is no joke
Story of my life! Had to eventually just quit my job
I’m sure this is what I have but my doctors havnt considered that. I have had lost off blood test done and scans for kidney as my back hurts and they have come back clear. I’m 55 I stopped my periods in my 40 I have been on HRT since then. The description off these pain r what I have been going through for the last six months pain every day I’m tired and now getting pissed off and getting very tearfull. My Doctors r now referring me to have my bowls checked and my intestines scanned but I really think there looking and testing for the wrong things.
I have been trying to find someone in the medical field to do something to help me. I have been in a living hell of constant physical sicknesses and pain from excruciating muscle spasms in different areas of my torso, lower abdomen and legs. Constant exhaustion. Have been repeatedly told I have lots of blood in my urine with no infection present. Loose and painful blowel motions. Sudden enlarged liver. Weight gain and acne that I can’t control. Lumps in my breast and back pains. I suffered severe painful periods with heavy bleeding since my early teens and only helped by the insertion of a mirena after uncontrollable bleeding after the birth of my kids. I was recently diagnosed with ovarian cycts. I have had Endometriosis removed three years ago from my cesarean scar. Every time I saw my G.P about my symptoms of painful lumps in my lower abdomen, I was told it was scar tissue and sent for numerous scans, only to be told its a large mass that is getting bigger with ni further action being taken. Finally after 3 scans and many visits with my G.P, with no diagnosis I demanded a biposy. I have always believed I have had Endometriosis. I had the biopsy and Endometriosis was confirmed. I had two very large masses of Endometriosis removed. This was after years of hell trying to get help from doctors. My symptoms now 3 years later are making my life a painful misery. Muscles spasm type pains that hit me suddenly in different parts of my torso. Chronic painful loose bowel motions especially after eating, blood in my urine, acne, weight gain, facial hair. Dull ache in lower abdomen that never goes away and extreme fatigue and exhaustion. After years of hopless doctors visits, I finally have found a gynecologist who has diagnosed enlarged ovaries with cysts on them. I was also told I would be having a laparoscopy and could potentially be facing a hysterectomy or surgery to remove what Endometriosis they can, along with Hornone treatment. Please forgive my essay long lifestory but I am scared and desperate as to what I should do, as I have read conflicting things. Any feed back would be greatly appreciated. I am 36 years old and feel so unhappy with this situation. Like all of you poor ladies who suffer from this hell I just want to be well and pain free.
I relate to all that u have said my Doctor has no idea I’v had so many blood test urine test scans. I’m now booked in for a MRI and a endoscopy. I have mentioned endometriosis but my Doctor said it wouldn’t b that because I havnt seen a period for 10 years and I have been on HRT. But every month I will sill get the period pains. I get pains every day some mild than others. It’s making me so depressed. I could do with a gynaecologist to have a look. I also suffer from fibromyalgia which can also cause pain but this pain is definitely a period like pain.
A hysterectomy does not cure endometriosis! You have to realize that you will go though menopause and the endo can still come back! I’m 35 now and had a hysterectomy 3 years ago but they left my ovaries and my endo came back! I have it on my bladder again and it sucks! I know how scared you are and how bad this disease sucks but everybody I talk to regrets having a hysto! At least they left my ovaries so I didn’t go into menopause! Goodluck and hope this helps a little!
Hope & Jenn
I chose to have a hysterectomy at 36. I have all the pain that Hope talks about. It starts at my rib cage and goes down to my feet. It seems a lot of people on this site have the same problems with leg & hip pain and I wonder if if its from the Endo growing into the muscles and nerves. I went to a reproductive oncologist and she told me if they left my ovaries I would have to have surgery again in a year and a half to two years because the hormones feed the endometriosis. I had all of it taken out and I’m not cured but I feel better than when I had it. Some days are better than others…. I started on progesterone a few months after & estrogen a year later to starve it out for a while. My dr said the meds don’t activate the endo as much as our natural hormones.
I wish u more better days💐
Paula
I had/have im sure endometriosis and ended up having a hysterectomy and was great for years. Best decision i made..
Hope , I have also been diagnosed with endo and your symptoms and story are very similar to mine, so I want to just share what I’ve learned in the last 18 months. Maybe it can help lead you toward better treatment. BTW- I use caps for emphasis, not yelling, okay. 🙂
1st, know that by definition, endo is endometrial-LIKE tissue found OUTSIDE the uterus, so removing the uterus, as your gyn suggested, will NOT cure endo. Removing the ovaries MAY help, because endo is stimulated by the release of hormones from the ovaries. However research has indicaed that endo glands and stroma can produce their own estrogen, so even a full hysterectomy will not guarantee freedom from endo. The ONLY way to come close is to remove ALL endo lesions completely, typically through careful excision, which most gyns are not trained to do. I wish a hysterectomy was the answer. I’m sorry.
Also, hormone therapy may only suspend endo proliferation temporarily, sometimes not at all. Regardless, if you find relief, there are many side effects with hormones or GRNH inhibitors, so please research a lot before committing to a long term treatment, for your own well being.
So, in the last few years, I had most of those symptoms you mentioned, plus a few others, like low back pain, abdominal lumps and pain, sciatica, migraines, etc They have actually been bothering me for much longer (decades – yup, I’m feeling old *sigh*), steadily increasing in intensity. Last year when I finally insisted on another laparoscopy, things went from bad to worse. Briefly, I learned that I likely have endo’s evil sister, adenomyosis, as well as Pelvic floor myalgia (PFM or sometimes PFD for Dysfunction) and Myofascial pain syndrome (MPS) – THIS equates to the muscle spasms you mentioned), Interstitial cystitis (IC) – this is a very painful chronic bladder disorder that is often comorbid with endo. Blood in the urine is common with it, as is a feeling very like a UTI that never goes away and is never helped by antibiotics.
Also, I was diagnosed with IBS because of similar bowel changes as you have mentioned. Although, bowel disruption is common when endo has found its way onto the bowels, basically imitating the symptoms of IBS, only with actual pathology. Unfortunately that pathology can only be seen through surgery, unless you are unfortunate enough to develop a bowel adhesion that causes a restriction. Otherwise it is invisible to TV ultrasounds, CT scans, and usually even MRI, unless the lesions are really big – heaven forbid. Still, it is a rather silent torturer, because clinicians can’t easily test for endo on the bowel (or elsewhere).
Since my last lap in April ’15, I have undergone 14 months of Physical therapy with both a pelvic floor physical therapist and another working on my low back and sacroiliac area, 6 weeks of bladder instillations, 2 other surgeries, nerve block injections, countless specialists and more meds than I want to even remember (because most had AWFUL side effects). And I’m still fighting.
The PFPT helps to loosen adhesions, work out muscle spasms (or trigger points) and stretching those muscles in an attempt to combat the PFM and MPS. This is also useful for IC, because after the body has undergone years of trauma (pain), the CNS often basically misfires, and the muscles near the source of trauma overreact by clenching constantly. It’s like having one or more endless charlie horses in your abdomen and pelvis. SO painful.
Of course I’m no doctor so I can’t give you any medical advice, but armed with knowledge hopefully you can go to your doctor and discuss these symptoms and diagnoses and see if they fit with you. A Urologist can help diagnose and treat IC. A certified women’s health physical therapist can help with the spasms and PFD. A well trained endometriosis specialist can help excise your endo (which is best before the PFPT). A pain management specialist can help determine if your CNS has centralized the trauma and treat you accordingly.
And finally, I have found that going to a mental health professional has also helped me immensely. The pain and trauma we suffer is no small thing. From doctors accusing us of it being “in our heads” or being pill-seekers to family pressuring us to have a baby or a hysterectomy (gah!) to the way our own minds and hearts punish ourselves for not living up to our own self-appointed expectations with guilt, anger, mental defeat, you name it…if you live with chronic, invisible pain like this, a psychologist or psychiatrist can be a real ally. And we, women with endo and its wicked comorbids, need all the allies we can get.
Speaking of…there are some fantastic support groups on FB too for endo, adeno, IC and more. Wonderful women going through much the same as you and I are, who are willing to listen and encourage you when you’re feeling down. You are not alone, sister. Best of luck.
I realize this is a few months late, have you read up on PCOS? You have many of the symptoms. Anyway, just a thought. I have endometriosis, diagnosed 9 years ago after a laparoscopy and slowly making its way back.
No that’s all Endo symptoms for sure I have them all
I feel for you. I truly get exactly what you’re going through to the t! I just got over one of the WORST periods I’ve ever had. I nearly had to check myself into the ER because the bleeding and pain was so bad. I’m sorry that the removal of the endometrial adhesions from your c-sections didn’t rectify the problem. I too have these darned adhesions and for 8 yrs I’ve dealt with it. It’s ridiculous how flipping awful this crap makes you feel.
Very good analysis. I’ve used the “toothache” pain to describe the inner nerve pain. Sometimes-in addition-my body will shiver and chill from pain. I know I’ve become so immune to the effects of the pain. I’m working on being more aware of what my body needs to mitigate the episodes.
Your article gave me much relief in knowing others understand. The mental impact, woah–it’s not going away is difficult to process; it can be very frustrating to go to sleep in pain & wake up in pain. Management is key- I got off heavy pain killers, only because of side effects- I’m now trying other methods.
An exhausting journey, but solace in knowing I’m not alone.
I found this help in trying to help my daughter understand that first of all she isn’t crazy. It is also helpful in explaining it to her boyfriend and teachers. It is very emotional living with this disease and feeling like you always have to explain yourself and apologize for how you are feeling. I have dealt with this all of my life and even before anyone had a name for it. Some doctors really don’t get just how much this disease controls your whole life. Thank you for this information.
Thank you so much for describing your pain as a “toothache pain” . I have been struggling with this for awhile now and it had finally gotten to a point where I couldn’t handle it anymore and I have a CT scan scheduled later today.
I thought I was going crazy when describing my pain as a toothache like pain and you are the only other person I have seen describe it as such, it’s a nice feeling to know that I’m not loosing my mind and this genuinely could be what’s wrong with me. So thank you, so much.
I don’t have insurance or doctor and with that said I have to rely on natural remedies or over the counter medications. Well my period felt today and yesterday as if i wanted to go so bad to the restroom and I coudlnt’ my insides feel like burning fire and knifes stabbing my abdomen they pain is so bad I fall to the ground and hardly could walk. My insides bellow my pelvis felt like fire. I have a feeling like going to the restroom but I cant’ it just bothers me, I hate for any women to ever go thru this.
I am currently scheduled to go to my gyno and see if I can find a resolution to all my pain because I did my own research and know from my symptoms that I am provably facing stage 4 endometriosis with bladder and bowel involvement due to the bleeding that I experience with each period. I bleed so badly from my rectum and bladder that I not only use tampons but also wear a maxi pad to contain it all. I have been dealing with the unbearable pain during my periods since I was a child. I have another complication to contend with though because I have hashimotos thyroid gland and I am going through trying to get that under control as well. I’m 45 and completely done having children because I learned after losing several pregnancies and barely carrying my daughter to term that my hashimotos disease causes infertility issues that are pretty much irreversible. My pain is so bad for the first two days of my period that it is difficult to function at all but I am a widow and must take care of my daughter on my own so I have no choice but to function without change when it comes to work. I so hope that if I am forceful enough in controlling my own treatment that I will be able to be pain free once I get through all the surgical repairs.
This has helped me to better understand endometriosis. I have always had terrible periods and hormonal imbalances since a very young age. These last 2 months have been the worst I have ever experienced and not just while on my period. I eventually had to go to the ER where they couldn’t find anything wrong with me but said there was blood in my urine. I go to the specialist this next week and am really hoping for a diagnosis and hopefully some treatment that will lessen my syptoms. I also get severe leg pains but I work on my feet all day and ride a bicycle to and from work. I am only 24 and although I have not had children this is without a doubt the worst pain I have ever experienced in my life. I was fortunate that my first visit with a new doctor her first assumption was that it may be endometriosis so I don’t have to waste anymore time wondering.
I was diagnosed with endometriosis 5 years ago and given the mirena coil to help with the prolonged heavy bleeding. This worked wonderfully until recently. Ive been suffering chronic groun pain, back pain, urine retention, blood in urine, pain on passing both urine and pooh. A visit to my GP has resulted in tests being carried out to check for cancer of the bladder and kidneys which thankfully its not. However, they have found a cyst in my pelvic area which is 66cm x 77cm…. let me say the pain i am living with while undergoing tests is unreal and the dragging pain, ache, shooting pain which is crippling at times is awful. Im hoping when i meet my gyne he can offer me a treatment that will bring relife. Can i ask is anyone else going through symptoms like me, any help and advice would be really appreciated.
Hi All,
I’ve not been diagnosed, waiting on a lap that my gynocoligist is REALLY hesitant to do. Back pain, lower abdominal pain, headaches, GI symptoms flare up during mentruation. Also suffering from colitis that was diagnosed about 5 years ago. It’s very difficult to be brushed aside because you look “fine”, but are suffering so badly most days of the week. I’m lucky to have a wonderful husband and toddler to keep me going, but as you all know, it gets really frustrating. My heating pad is my best friend most days. May we all find the answers, help, and understanding that we need from the medical community. This website and comments from others who are going through similar struggles is so comforting, thank you ✌
Hi ladies!
I have been in and out of hospitals and dr offices for 7 mo trying to deal with my endo pain.
I FINALLY got in to see s specialist and he is amazing!
He put me on LUPRON and I haven’t had any pain in a week!!! And this is coming from pain almost every day for 2 mo straight and on and off before that!!! 2 MONTHS OF PAIN EVERYDAY
I was placed on bed rest, I was bleeding BAD and hating my life!
We all know the mind, body, and soul ripping pain!
ITS GONE!
It
Is
Gone!!
I hope it stays this way!
Down side, I have muscle cramps in my back on the right side ( same side as my major endo pain)
But it’s not constant and the dr said it wil level out when my body adjusts to the meds!!
Seriously girls, I have been trying all kinds of homeopathic remedies, and anything the Drs suggested,
NOTHING
Has helped like this!
I am very happy, pain free (minus the muscle ache) and I STRONGLY urge you ladies to ask your gyno about LUPRON!!!!
-Tara
The systems that have been diagnosed is what I’m suffering with but I don’t understand if I have it cause I had operation about 4 years ago I had something burnt to stop the bleeding and only just started the bleeding and I’m so much pain and I have drank a lot of wine lately
Hi my name is Joanne and Im 25. its been almost a month since Im having this crazy pain its like something is ripping something in my pelvic area the pain start when im walking, sitting and get up or just active and then stays for days and it goes away but its start all over again. i have a 2 year old daughter and since shes born I have been in the DEPO so I have no periods but since this been happening I been having like periods pain, lower back pain and the doctors have not find anything I dont have any cyst or infections or anything like that so I dont know but this pain is driving me crazy is so annoying I dont know what to do.
I have always had bad cycles. I started my menstrual cycle at the age of 9 years old. I have read many articles saying your peroids should only last 3-7 days, ha.ha. I could only wish they were that short. Finally after years of pain I had an ablation. It did lessen my peroids to 7-10 days sometimes 12. But my right ovary ( every month) feels like someone is squeezing it until I think it will bust. Pain is so bad I can’t get out of bed. I to have pain ( bruised) feeling in my bottom. Oh yeah and the pain of having a bowl movement while on my peroids is unbearable. Sometimes I think I will passout on the pot. Lately my kneees feel as if all my energy has been sucked out through them, I rub muscle rub on them they throb. No one should have to endure this pain. Most men think we are being dramatic. I am only 38yrs old and would hate to have a hysterectomy but at this point its my only option. The one thing that has always eased the pain is hot bath. To bad I can’t take a tub to work. Now both my daughters have been diagnosed with PCOS and Endometriosis.
I had a partial hysterectomy 3 years ago removing a lot of endometriosis along with uterine fibroids. For the past year i have started having more symptoms that point to my endometriosis being back, especially the past six months. Pain is so severe it spreads from my groin to my lower back and hips. I walk with a limp at times, i can’t sleep, it hurts to sit for long periods of time.
My surgeon moved so i have not been back to the doctor, mainly because my deductible is so high.. i eat NSAID’s and that doesn’t help much. I am going to try Evening Primrose Oil to see if that helps.
I am single and 38 years old! I hate going through this! I feel like an old woman, I can’t get out and enjoy life because of the constant pain. I have so many things i want to do, so many hobbies and a 5 year old son that loves to keep me on my toes. By the end of the day i am in tears! I feel like i can’t even get a date.. and i am a very pretty woman! But how do you explain this to people?
I do have to say the hysterectomy was the best thing i have ever done though! I felt like a million dollars afterwards… at least until now.
Dear Doctor
I am a lady of 30year. I sometimes just randomly get electrical strike on my abdominal or womb like lightning. It comes just strikes from vigina to abdominal part of my stomach. I dont knw where i shud visit gneacologist or normal doctor.
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I’ve always had irregular periods and with those come painful cramps in my back, lower abdominal and a more embarrassing part, the anus. Recently though, I’ve been feeling that somethings just not right.
I can’t seem to find the strength at the gym I used to have, I’m tired, moody, nauseated, my stomach feels like I’ve been poisoned but I can’t throw up no matter how sick I feel. I fainted one morning or almost had a hard fall. Thank God my boyfriend arrived at the right time and caught me before I hit the floor. I was shaking and heating up.
I had a Pap smear and uterus test which came back clear. The doctor suggested that I get an ultra sound and blood work as I have symptoms of fibroids and/or cysts. After checking online, I have more the symptoms of endometriosis and still waiting to get an appointment with my doctor. I called to set kne up explaining my pain and symptom but they just won’t take me seriously as an urgent care patient. They told me to wait but I don’t think I can anymore.
I feel unmotivated to do anything and I don’t want to socialise which are two things opposites to my normal self.
As I write this now, I keep getting waves of sharp pain in my abdominal area all the way down and over to my anus and lower back. Earlier this morning, the pain was so bad and going down my leg through my hip and into my thigh muscle.
I’m usually not bad at handling pain but all of this with fainting, nausea, migraines and just fatigue are getting the best of me. I still try to get out and try to distract myself but the pain hits me in the middle of walking or anything and I have to pause and take a lot of deep breaths.
I feel the pain of every woman going through this and I hope you feel better. I am yet to figure out exactly what is wrong with me.
Everything here was so helpful,because my case is unexplainable.Worse than labour pain. I have faith, I will come out of it soon, my lap is coming up next month. This pain has made me feel like I have no life with my husband. Everything is possible with God.
We are all in this together. Let’s keep fighting we will one day get out of this.
That’s right!!! We’re stronger together
My diagnosed endometriosis is causing me great problems at the moment despite having had a hysterectomy and my right ovary removed. The problem now is from my left ovary. I have been in pain now for twelve days with only a couple of pain free hours x my high dose painkillers don’t work. I am having an injection today to shut down my ovary.
Such a great community of women helping each other out, loving this!
I’ve put off going to a gynecologist because I’m afraid they’ll misunderstand me and misdiagnose me. But I suspect I may have had endo this whole time. So here’s my deal:
I’ve had severe cramps ever since I started at 12. I’m thin (but not extremely thin) and been diagnosed as anemic. My flow is always heavy with clots. And when I was prescribed iron pills for anemia, I noticed it made me bleed more during my period. Anyways I notice I bleed a lot when I get those sharp stabbing pains. Generally, my cramps start about a week before my period starts, it’s a dull heavy ache with sharp pains that leave me breathless for a few minutes. It comes and goes. Ibuprofen stopped working a long time ago. Midol is starting to not want to take effect anymore as well. I get extremely bloated and some constipation. But the pain is more localized on the left side of where I guess the ovaries would be located. And then the pain goes towards the area where the uterine and lower stomach are… So like two or three inches below belly button. As I’m getting older the pain keeps getting worse. I have to lay down and literally feel disabled when on my period or before when I have those cramps. Also my breath get sore!!! I’m 20 now, never been sexually active so I know it has to be either endo or ovarian cysts.
I forgot to mention that when I get those sharp pains it’s so hard for me to stand up straight, I’m like literally half bending. And if I move too much it hurts a lot.
The interesting thing tho is at this month my period was one week late. ITS NEVER BEEN LATE..EVER. It’s always usually early by a week or a couple of days (aka irregular) I still had the severe cramp pain for a week before, bleeding is slightly different now.
Ok this isn’t about endo but it has to do with our lady areas. I was wearing a panty liner because I anticipated my period to begin any day now . And so I was sitting at work for I guess a really long time and when I got up something hurt extremely bad. I think it was the labia?? It’s gotten a little bit better but anything that touched one of the “lips” caused so much pain, like burning . Or even when I sit. Ironically I also started my period so I switched to a bigger pad and that rubs against it and causes discomfort. If I just be careful and cautious, will this soreness, irritation/burning go away on its own?
I read that putting lots of pressure down there can cause problems with the vulva… Like riding a bike, horseback riding, and sitting!! So I guess that’s the culprit.
My period cramps start before period and last during period, this month my period was late by one week… Making it a total of 37 days since the last one.
This sounds exactly like ENDO!! You should go get checked out by your gyno!!! I’m sorry you hurt. 🙁 I know the struggle, but once I got on Lupron it helped change my life
Also, r u supposed to feel lumps on your lower stomach, like just beginning he top of the uterus? I noticed that when I’m in pain I feel these lumps but go say when I lay down . You can especially feel them if I’m leaning forward
I found out today that I have endometriosis, and what drives me crazy is my family doesn’t understand a thing. They telling me to pray and I will be ok. I hsve been experiencing the pains for more then 5years now. And now the pains are getting worse, at times i can’t walk due to pains in my left leg. I have been dignosed with a disease that no one understands and it hurts me. Am emotionally tired. Last year when I had a miscarriage at 7 months no one knew what was wrong… I have this pains they are horrible and I experience them 24/7.
I am typing this in tears. I’ve had endo for years, im down to one ovary, but I am just now getting the radiating pain down my leg. I cant walk right now but am menstruating right now when all is at its worst. I had the leg pain a couple weeks ago and didnt relate it to the endi because its new for me. My symptoms have always affected my lower abdomen and back, and I just have to get through 2 or 3 days of excruciating pain for worse than when i delivered my 2 children all natural. Ive always had a very high tolerance for pain, hate it but can take it. I am beginning to not be able to take it. I turned 40 in April and though i dont want to admit defeat, I can feel myself breaking. At this point i feel like i need the help of strong pain killers. Is there doctors that will prescribe something in emergency if diagnosis can be provided by me? Its Sunday and i need help now!!
Hi Rebecca,
I’m sorry to hear about your pain. Trust me I know exactly how you feel I was diagnosed with Endometriosis in 2013 ( Laporoscopy Surgery) after suffering many years. I did find relief by eating gluten free & after taking the pill for a year with no sucess I’m now on IUD Mirena which has been Amazing! No periods at first I do have pain every once in awhile but never how I was before. I couldn’t get out of bed and suffered headaches with extreme fatigue. Although I am tired not as I was before. I wish you well! Get as many second opinions as possible don’t give up!
I have been where you are. I am typing in tears as well, and am ready to throw up everywhere. I used to go to urgent care to get something stronger when I had episodes where I felt as though I was being torn apart. Now, many doctors are hesitant to prescribe anything! And it sucks because we suffer in pain all day and all night. I have about no quality of life anymore and fear I may have to quit my job due to the endometriosis and adenomyosis. I just continue to pray for relief and continually do research on my own. I wish you the best of luck love.
Omg. This is exactly how Ive been feeling for months and unable to put into words!!! Very helpful. Thank you
I have had endomitriosis for 14 years, I have had it since I was 8 years old. It is more than a bad period. It has gotten to the point where I can’t eat, sleep, walk, talk, and even my hair becomes impaired. I bled so badly that I couldn’t go anywhere, I had to change my pad as soon as I put another one on. I had it for years and no doctor looked into it at all! Till I was 18 years old. I am on the depo shot, it did help for a while BUT as of now it causes more issues. I randomly bleed and the pains have come back just as bad. Still to this day my doctors haven’t done anything no matter how much I want something done. Thankfully I have a great partner who understands and supports me but STILL, it does affect me and my life every day. Hopefully soon something is done as I want children. To everyone else that suffers from this keep your head up, and keep up the good fight!!!
I’ve already described my typical endo suspected symptoms on here. But I just now started feeling lpain where the ovaries should be located and it goes into my groin and upper thighs like a radiating pain and I feel extremely tired. It’s been like that for about a week and a half… First started off on the right now it’s both sides. Never had this before!! I’ve put of going to a gyno, I’m 20 by the way
I’ve already described my symptoms as the usual endometriosis symptoms. But I’m experiencing something new. For a week and a half already I e had pain where the ovaries r located and it radiates in my groins and upper thighs… First it was on the right side then before I knew it.. On the left side. So yes both sides. And I feel extremely tired. I’m 20 by the way. I’ve put off going to a gyno to get myself checked out for endo… I just don’t want my symptoms to go ignored by yet another doctor
So helpful.
I’m 42, diagnosed surprising quickly with Endo after I demanded help (3 sets of anti bi’s to treat a UTI that never was) CT45 blood test was high and sent the cancer alarms ringing, it wasn’t but it got me seen and a Lappy. I had a twisted ovary and a left ovary with unwelcome Endo whichever as promptly removed. I was told a year free (I was shocked – just a year?) but then with 12 weeks later it’s back, I can feel it, the pain, the fatigue. I’ve asked for a gyne referral and luckily got one for the end of the month but how to move forward I’m not sure. I eat well and haven’t found any food triggers but it loves too much alcohol if I go on holiday or have a few celebrations in a short period of time which I’m learning to avoid. Learning to live with Endo is the best hope as otherwise you live with it which is no fun
I’ve suffered for 17 years on and off contraception , scan after scan till I told them I wanted to see a gyni ?? And told him if he didn’t remove everything I would , and I’d have to come in so he could sort out what I’d done !!!! I’m now waiting for a full hysterectomy cervix , uterus , womb tubes and ovaries , keep pushing guys because it’s no fun
8 Years of Endometriosis and part of family still doesn’t get it… heck I don’t even get it. I have realised a lot of people don’t know about it or understand the disease. What pains me is lack of emotional support from surrounding loved ones when the pain returns.
I am South African and was diagnosed with endometriosis in 2008 after my 1st lapscope.
I had my 2nd lapscope in 2012 and was scheduled for a 3rd one in 2014 which I chose not to have seeing that the more operations you go for, the more you decrease your chances of future fertility.
I’m 27, not in a relationship and I live at home for “parental & cultural” reasons I have chosen to understand and respect- which will change soon as they don’t accommodate my condition.
So I had a tiff with one of my parents for not going to work for the 3rd time this month because of the effects of the pain on my body and most especially my productivity at work.
What was not understood was why I didn’t soldier up and just go to work since everyone in the house has health issues but they keep living- the comparison of this disease to flu and stomach bugs is unfathomable, most especially since its almost been a decade struggling with endometriosis.
So I searched for “how to get loved ones to understand someone whose living with endometriosis ” on Google and came across this website which is incredibly informative and hopefully the information I retrieved from this page will assist my family, friends and probably my boss to understand the up & down experience of the pain and it’s impact on my life…
I got diagnosed with Endometriosis 18 years ago & ovarian cysts. For Afew years now I’ve suffered really bad shooting pains up my bum 🙈 Felt like I’m going to pass out, go really hot with a cold sweat (looks like I’ve just stepped out of the shower. Could this be symptoms that I have this in this area? Worried now.
I was just diagnosed in May through Laporoscopy. I am 30 now. But have had problems since I started my period at 13. I would have severe period pain. Throbbing pain in between my thighs and radiating down my legs and through to my back. I thought it was “normal period pain” but as I got older it got worse.
When I became sexually active (2004)my obgyn put me on a low estrogen Birth Control which I took for 2 years when I moved and stopped getting the perscription filled.
A few months later I got pregnant with my first (late 2006) breastfed for a year and immediately went back on birth control. And stayed on the same one until last year (Dec 2015) when I started aging bad anxiety from it.
So from 2006-2015 birth control really helped. But once i stopped taking it.. well.. That’s when all hell broke loose! And every month since then has been worse. My doctor finally started testing me and sending me for blood work and all that good stuff. They saw a large cyst on an ultrasound and then scheduled a laparoscopy.
The laparoscopy showed a large cyst on my left ovary and large amounts of endo. Yay.. what I expected all along. At least i knew it wasnt “all in my head”, though i wish it was.. I have a surgery scheduled for July 27th, 2016 for a laparotomy which is the larger incision on my abdomen.
I sit here now in the most pain I have ever been in in my life.. even worse than natural childbirth! I feel so helpless. It’s like I can feel everything moving through my intestines. And the pain when I have a full bladder is unbearable! I can only describe it like.. contractions, diarrhea cramps, constipation and the worst period cramps multiplied by 10! Like I sit on the toilet hoping that something will happen and bring me just a little bit of relief but nothing!
On top of all of this.. my doctor is treating me like i am exaggerating with the pain, as if im in it for the pain meds. He only perscribed me 14 low dose vicodin in the last month. And when I showed up at his office crying, he made a comment that made me feel guilty for being in pain. Like I was at fault. I can’t control it. I didn’t cause it and I have to suffer! it’s frustrating not being able to talk to anyone that can relate. I am sorry for rambling on. But I guess I just needed to vent.
This is how I feel. It hurts so bad! I do not have kids I couldn’t have them. I have a severe case of it. I’m having a hysterectomy in September. But I know what you are going through. I feel like everything is being ripped out of my body!
HERES AN UPDATE
After my surgery they found some chocolate cysts. And popped all the cysts on my ovaries (pcos). My doctor found that my uterus is shaped kind of funny so he thinks it’s adenomyosis. Which is pretty much endometriosis inside the uterus walls. And he took out everything he could find but here I am a month later and the pain is just as bad. So yay me.. I got diagnosed with 3 conditions. On top of having ovarian cyst. Next step is a hysterectomy. HAS ANYONE TRIED ENDOVAN?
I am 30 years old and I’ve had extremely painful periods for years. I was recently diagnosed with endometriosis. I’m having a hysterectomy in September. I was wondering if anyone has ever had side pain from it? My side will hurt so bad at the waist on my left side. I can’t handle the pain anymore! It’s slowly killing me.
Hi Elizabeth
Finally , somepne i can relate too! I do have pain on my left side. But it’s more like the inside of my left hip bone. But I have a large cyst there. It gets so painful that it’s hard to walk. Like a sharp stabbing and achy type of pain. But I have read that endo can grow anywhere in the abdomen. It can grow on the diaphragm and lungs in severe cases. I home this is not the case with you. My surgery is in 10 days ( yes I’m counting) I’m kind of freaking out because my doctor is older.. like about to retire in a few years. I wish you luck with your surgery!
Thank you for the insight. I went to the hospital this weekend due to my pain being so bad. They found a large 6 cm cyst on my right ovary after a CT scan. I was surprised they didn’t do the surgery that evening but has now sent me back to my gynaecologist and family physician for more tests. It’s now Monday and I’m still sick at home with severe pain but not as bad as Saturday. This affects my pooping as well and I feel very constipated during these episodes… My entire lower abdominal feels very swollen and when I move in my bed I get sharp pains (or when sitting up). This sucks!! For many years I have felt that my physicians have not wanted to do much about it and believe pain is subjective. I’m emotional basket case and I really wish I could get the support I need. This completely ruins my quality-of-life.
I feel the same way. It comes and goes in “flare ups” i get them 4 times a month on average an the last days! It’s horrible. I hope you find relief. I can recommend heating pads and ice packs!
You described my pain perfectly. So bad lmost feel suicidle at times. I had a stroke two years ago from the treatment for endometriosis. Gained weight from being in bed and lack of mobility during recovery. Now dr says I have to loose weight cause I’m high risk for hysterectomy. Completely ruined my life and I’m on disability now. Not living just existing. I hate my life and need a dr who can take this pain away.
Hi lisa,
I’m sorry you feel this way. It’s a horrible disease to have. But just know how strong you are! And how most people wouldn’t survive with this disease and you are! You just need to find an outlet. I started to workout. As hard as it is to get up and get there through the pain, once I start the pain goes away! Relief for a few hours at least! It’s like the endorphins or something.. idk I’m no a doctor. But I decided I will not let this disease knock me down. And as much as it hurts and through the depression I will fight it! I hope you can do the same. I hope you have better days and know that you are stronger than this. I’m sending my love your way! And wish you nothing but the best! 💕
After my last cesarean 4 1/2 years ago, I had a tubal ligation. Ever since then my cycle comes every 22 to 24 days (before came 28-30 days), my periods last 7 days (before were 4 days), heavy bleeding with a lot of clots for the first 4 days (before heavier flow was 1 or 2 days, hardly any clots), severe cramping (cramps before were mild and only for a day). Also in the last 10 months I started getting this pulled muscle feeling but very painful on my left lower side during my periods. Each month it got worse. So a few months ago I went to the ER because it lasted a week after my period and was extremely painful. They did a CT scan and basically found nothing but some constipation. I have suffered from constipation pretty much my whole life and knew this was something different. But really I didn’t expect an ER doc to help, just want to make sure it wasn’t some organ that ruptured. I couldn’t lay on my left side and sometimes it was hard to even move because the pain was so debilitating. Well its been a few months since then and sure enough every month during my period, that tearing pain returns. A few weeks ago I started taking a probiotic with 30 billion live cultures. I am currently on my menstrual and didnt have any cramps but I do still have the muscle pulled feeling in my lower left stomach but not as bad My flow was still a bit heavy first 2 days but no clots and its day four and it has lightened up. I am going to the doctor in a few days and will be addressing my concerns but unfortunately I am not hopeful anything will be done. I also have gained 19 pounds in 3 months and I am tired all the time despite getting 8 hours of sleep. Probiotic has helped with the tiredness, I do feel I have more energy since taking it. On one hand its good to know a lot of woman have the same problem but on the other hand seems like doctors just dismiss it.
I have a wierd crawling sensation in the right leg and during period the energy warbles from the back and front just above the hip down the leg. I have always had painful menstruation. Each month I take painkillers I’m 4s, 2 nurofen and 2 paracetamols. To combat pain. At night sometimes I take night nurse. The period pain is excruciating. However I find not even my mum understands or cares, and women don’t care,. In my work I work part time and pray that the period falls on a week end or day I am.not working. I am.always cold. Even in summer I use a Hotwater bottle I’m bed. England is not a warm place anyway but I need heat. I always feel like I am a lizard. I need heat to function. I find a hot bath helps, Hotwater bottles. A cat helps. My cat does not mind my moods
Were as my friends seem to notice my face and things get awkward. As I have got older it is the pain in my right leg which bothers me most
it is hard to walk.
I have had enough of been in so much pain like a depress all the time the doc think by taken painkillers is the answer but it’s not give us the proper treatment to help us need to back been happy again
I’m 25 I was finally diagnosed last year with stage 4 endo I have not had kids and now may be unable… My right ovary is twisted and scarred to my uterus with my Fillopian tube wrapped around it. I have had terrible periods to the point of almost passing out as long as I can remember with several visits to the ER and even more Drs. I was misdiagnosed with PCOS as well as “Painfull Periods” and told it was all in my head and I needed to see a psychiatrist by my general dr. I’m in constant pain, exhausted all the time I miss work, miss out on living, I’ve tried every birth control, the lupon depot shots that have miserable side effects, I had a DNC and he burned what he could off but I’m to young for him to take what he needed. I now have hip pain and radiating pain through my leg and am out of options and I’m pretty sure my dr. Who has been so understanding is even fed up with me… I wish there was more understanding around this disease. It has completely changed me and my path it determines if I have a good day or not, whether I go out or not, whether I make it to work. Im so frustrated.
This article is so good and very helpful. I was diagnosed with endo in 2006 and it was second stage on my bowel. It is now 2016 and I still have it. I am praying and seeking the Lord’s face of what treatment he desires for my body. He will never leave me or forsake me. He binds up my wounds and saves those who are crushed in spirit. If it was not for Jesus Christ and believing in him I could not find hope. Jesus died on the cross, shed his precious blood, was buried and rose again on the third day. Now there is an empty tomb with repentance and forgiveness of sins to save us from an awful place called HELL. This is a place with weeping and gnashing of teeth, eternal torment, outer darkness, separated from God forever, no peace or rest day or night. Jesus wants us to believe on his name and be saved. Cry out or call out to him for mercy. Today is the day of Salvation. We are not even guaranteed the next 5 minutes or tomorrow. Be reconciled to God.
I have endometriosis which causes lower back pain and pelvic pain on my left side. This pain will sometimes travel down my leg and causes extreme fatigue during the day. I am considering a hysterectomy and a laporascopy to gain back my quality of life. Currently an on continuos hormone therapy but that’s not helping too much. Any feedback would be much appreciated.
I was diagnosed after suffering for 10+ years.I was formally diagnosed in Feb and had major surgery two months later. During surgery u was told that my adhesions and growths literally had my organs webbed together. It could have caused major issues and could have even caused death if left untreated. Sadly, many women get the “shoulder shrug” when they describe the symptoms to their doctors. I hope more gynecologist start taking this more serious. Best if luck to all women dealing with this.
This is so scary! I have been fighting fr to dr trying to get taken care of, no one seems to really care. And it’s wrong
Yes i did i have all this ! Because i have spinal problems and either have ra or fibromagism it gets over looked and no one listens or understands
Thanks thats was very helpful and feel like am not the only one. So iften when am in pain I just feel like no one can undesrtand and that you pretending. I can’t drive my kids to school when i have my period. My legs feel heavy. The pain is like a stabbing in my right constant. Feel depressed with constant pain. Try to stop painkiller but did not work. Some months are worst. Feel like am pregnant and having milk.. The body seems disfunctional. All I know they haven’t find anything yet to alleviste the pain. Women emotions may cause more psin. Be aware and do not let emotions take over.
Thank you
I found this to be very helpful and informative, this is the way I’m starting to feel every day.No substance to life.
Just had mine confirmed im in a lot of pain as u have been for years i was told it was in my head by my gp dr premnath dover gp
I’ve been having a stabbing pain in the right side of my tummy/abdomen. It came and went randomly. And the past 2 days the pain has become constant. The top of my legs (thighs) keep going numb every now and again, and the pain has just started to spread to the right side of my back. I’ve just started with constipation but I really don’t know what to do. The doctors don’t seem to know why I’m getting this pain. I’ve had 2 laparoscopys to have a look for endometriosis but they havent seen it and they have found cysts instead.
I found out i have this on friday. They said there are malignant cells, in an early stage. Four years ago i started having a lot of pain during my periods, I’ve always had bad periods, but they became nearly unbearable. Severe ovary pain, nausea, vomiting, dizziness and debilitating headaches. I was diagnosed after lots of testing that i had polyps and they removed them. I was 34. That happened 2 years ago. Not long after surgery i had the pain a d symptoms come back. My doctor hold me to lose weight and get healthier and in dome months we would review. Lost dome weight but symptoms persisted and i was getting my period 2 times a month and ot would last up to 2 weeks so i basically just slways had my period. In oct 2015 i was referred to a specialist gynocologist, finally in feb 2016 i got in and was prescribed birth control and in 6 months they would review. In sept 2016 i saw them and nothing had changed to they took a biopsy. Well… 2 weeks later i get a call to cone in immediately and then they told me i have malignant cells on my uterus. So monday i am seeing another specialist to do further testing and my options . Im 37 and always dreamed of a second child and been trying for 6 years. But more than likely my uterus will be removed and end of that dream. I have had a lot more symptoms just this past month. Severe piching feeling in the right side of my waist, a lot of stabbing pain in pelvic area, headaches, nausea, fatigue. I want to know if i keep my ovaries is there any hope at a second child through surrogacy or something???
I was diagnosed with endometriosis 7 yrs ago. I have very heavy periods. They are irregular and last anywhere between 7- 11 days. First 3 are the worst. It feels like contractions during labor. Or charlie horse pain in ovary area. Lower back pain too. I lay in bed and cry with a heating pad on for days. I cant function unless i have pain meds for those 3 days a month. Alot of doctors treat me like a druggie. I only need meds a few days a month but those days i truly need them. Looking to get laparoscopy done or hysterectomy. Very big decision but living in pain is not one.
You are not alone this is me to to t. I have been depressed cause I am always stressed when it with come five hours on the floor crying or eventually giving up and just sitting in the bathtub knowing I might have to miss work again… it’s tough . I try not to think about the kids portion because I want kids so much.good luck!
Well I know feeling but with God helping us and part about kids would luv have at least one but don’t know yet have Endometriosis stage 4
I know this is an old post but just wanted to say… please don’t give up on the thought of having children. I know everyone’s body is different but I have endometriosis, PCOS (since I was 11), and was extremely overweight and still conceived and gave birth to my son 3 years ago. It can happen even when all the odds are against you <3
Thank you for this article this disease makes me so lonely and I try so hard to keep everything together – sometimes I wonder if I am just a wimp – but knowing someone else really knows what it’s like makes me both sad and relieved – so just thanks bothering to write about something that is so over looked and covering things like the memory loss / cognitive function ( I thought that was just me ). The way this can affect a woman’s whole life is never really appreciated and I just hope with more raised awareness more will be done. All the best x
My pain is like spasms in my hip joints. Sometimes it feels like im about to give birth. Its hard to stand and when i do stand immediately after 10 mins im in pain. Im a painter in the construction field and i have to work. I just want to cry cause i dont know what to do
Hi there I feel sorry for you because I am a plumber and our jobs are quite physical and it’s so hard to keep up appearances in front of our customers – it’s difficult to be a woman in what were more traditionally male roles – then for our bodies to let us down is so frustrating. At the moment I have turned to herbal medicine and am already waiting for another operation so I really wish you all the best x
I’m a rigger and I definitely know how you ladies feel. I’m just over here feeling like my uterus and ovaries are trying to kill me.
I deal with this on a daily basis and with No Insurance I mostly suffer waiting on someone to help
Finally, I can understand what’s going on. I already had arthritis, in my spine and joints. I have thrombosis, and I’ve had leg, and both hands operated on. I’m 42, and not that old, but my regular meds. didn’t even touch the pain i have on a menstrual cycle. I was diagnosed with Endometriosis today, and P. M. S. D…. I KNEW SOMETHING ELSE WAS GOING ON. Right now, i guess it just helps to know, I was not loosing my mind. My hips, colon, stomach, all that, hurts me all the time. Especially, on a cycle. Hope to get treatment of some kind soon. Not sure what vitamin b-6 will do though.
Becky once I was diagnosed after an iffy blood test, a good gynae DR and a subsequent laparoscopy (im exactly the same age as you) it was all systems go. They took away the growth at the lappy and I was PAIN FREE for 3 months which proved to me that something can be done with endometriosis and we can be pain free.
Unfortunately its back and my DR decided to try shutting down my left ovary (the site of my Endo) with 6 x monthly injections. This forces your body into temporary menopause (I prob was peri-menopausal anyway) so he put me on Livial HRT at the same time. No issues at all with it and once again I’m pain free.
I’m 4 months in and so far so good. I’m
Worried what will happen at the end of my temporary menopause which could be either it comes back or it stays away for some time. Coming back eventually though is a likely outcome. Should it come back straight away then I have to consider with my DR whether I have an operation to remove my ovary. This means 3 months off work and some real
Recovery but time will tell and I’m
Ruling nothing out.
I hope you get a good Dr please don’t settle for less. Pain free is so good, you start to feel Hunan again and actually living! Not surviving.
Best of luck Becky x
I ran across this page (diagnosed w/ endometriosis) while trying to figure out why I am almost 2 weeks late, and not pregnant. I’m 38, and have experienced hot flashes, light night sweats, and typical “hormonal” issues for over 4 years now (day h. flashes have started), and am due for blood work (testosterone/estrogen) after showing neg. for pre-meno. 3 yrs. ago. I have suffered with chronic back/neck pain for over 10 yrs. & had no idea that endometriosis could cause so many things I have experienced. Yes, MRI’s have shown degeneration of discs, as well as other things, but there was never a cause/reason for such pain (i.e.-major trauma, etc.) I’m concerned that I might be starting menopause, but it just seems so early! Needless to say, on top of all the neck (causing migraines)/back pain, early/reg. cramping (even during sex), I deal with the hot flashes & extreme fatigue. I believe all of this has caused a bit of depression. I have always been outgoing, never met a stranger & full of life! Now I don’t find interest in things that I used to, & feel down. I apologize for going on about all of this, but I never knew it could be a possibility, since Dr.’S have never mentioned it. This article is very informative, and don’t feel so alone when reading all of the feedback. I guess I’m just wondering if this can all be caused by endometriosis…it’s a bit of hell on Earth! Thanks so much!
Thank you for the article. I was diagnosis when in late twenties or early 30 was not able to have children, I did have a beautiful child who us an adult and 2 miscarriages was put on hormone Med. I am 69. I would get the pains once or twice a year like someone hit me gorin double up can’t breathe and woukd continual off and on for a day. When I went into real menopause I would get three to four times a year but only last a few hrs. Now in late 60. Comes more often last longer and pain is even worse I would think this woukd not be a normal thing. Any suggestions to head me in the right direction before I kill someone when they hit when I am driving?
Ive been reading lots of these articles having recently diagnosed (provisionally) with endo, having had symptoms since I was a teenager. I am now 31, dealing with pain and fatigue every day. I thought it would feel reassuring to understand my illness better, but I actually feel extremely isolated and deeply aggrieved. This blog has been very useful to me, thank you so much for sharing.
I am 19 and have been struggling with the pain since I was 16,recently I recieved a laproscopy in hope that they would find the cause of the pain,and the results were that I have endometriosis and polysistic ovaries but it cannot be removed as I am too young,I get so much pain around my lower back,lower abdomen and even joints such as wrists,ankles and hips on a bad cycle. I do believe that people should be aware of endometriosis,and this page is a great way to describe it.
I have not been diagnosed with “endo” but I believe I have it. My stomach pain is exactly as described above and it brings me such relief to be able to actually put that pain into words. I DO HAVE A QUESTION. Could you just have the stomach pain and not any other pain? My menstrual cycles are normal and somewhat painful but nothing extreme. I have been gaining lots of weight but I am not sure if that is caused by this or if something else is the cause. I have gone to multiple doctors who say it could possibly be constipation (but that is not the same pain I am feeling) my OB-GYN says that it “might possibly” be endo but he would have to do surgery to confirm. Thank you for writing this article and giving me some sign that someone understands how I feel.
Im 22 years old this started happeningv3-4 days ago. I thought the symtoms were pregnancy but i got scared. I exspierence headaches,lower abdomial pain which leads groin, sleepin is sometimes inpossible, i get chills, lower back pain, hurts to go to the bathroom,hard to walk, the pain always comes around when i goto bed or when i wake up, im spotting not having a full period, dizziness,and dont what or why this is happening.
I battled endometriosis for years and I am currently taking vitalyzyme . I heard it gets rid of adhesions and scar tissue. It’s been e weeks and so far I am feeling so.e relief.
My name is Jane and I just want to share my experience with Endo. I am 34. I had period pains since my teenage years. I was diagnosed with Endo back in 2011. It was a chocolate cyst in my right ovary the size of a golf ball. I went thru my first lap. The surgeon drained the cyst and remove most of the Endo scars and lesions in my uterus and other areas in my abdomen that they were able to see from the lap camera. I felt better after that. My OB recommended BC pills to regulate my hormones so I took that and it helped me get thru period pains until me and my husband tried to conceive in 2014. I did conceive 2 months after going off the pill but I lost the baby. It was the most emotionally painful experience I had to go thru. The doctors couldn’t tell me the reason why I lost the baby. I’m thinking my Endo may have contributed to it. I went back to the BC pill because the period pains came back and I felt like it’s worst than before. After a year and a half on the pill, I went off the pill again to try to conceive again. I haven’t been able to conceive yet but it’s been 7 months since I got off the pill and every period pain is getting worst. I tried to change my diet trying gluten free, vegan and i think that helps a little bit but it’s hard to get on a strict diet because of our busy lives so sometimes I eat gluten and meat. Evening primrose oil helped my other symptoms like lower back and leg pains. I just recently tried acupuncture and castor oil so I don’t know if that will eventually help me. Sometimes, i just breakdown and cry but I’m trying to be strong and I wish you all the best ladies.
You hang in there…ive had 2 miscarriages since being diagnosed and i am now pregnant yet again..its bittersweet because i cant help but think I’ll miscarry again but have the highest hopes that this one will carry through. I suffered through my pain for the last year because i was so determined. It drains you i know but dont give up! Have you tried fertility pills to help with your ovulation?
Thanks Jess! It’s great to know that there are people out there who can relate to my situation. I’m praying for you and your baby!!! Keep the faith! I haven’t tried fertility pills yet but I will look into that.
Hi, Could someone please confirm whether diagnosis of endo can only be done by undergoing surgery?
I have had a constant struggle for the past 14 years, I have been told to wait until I want to fall pregnant in order to determine whether or not I do in fact have endo.
Am I seriously supposed to just wait in agony until the day I want to conceive? And when that day comes, I wouldn’t want to then only start treatment if I do in fact have endo as I am already 30 and such diagnosis and treatment could take up to a year (so I have heard?)
I would appreciate advice in this regard.
Oh my, I am so sorry someone has told you this. You need to find another doctor! I don’t know what their reasoning would be. Yes. The only way to diagnose endometriosis is through laparoscopic surgery. There is no other way although it can be suspected through symptoms. I don’t know why they would say you need to wait until wanting to conceive… while the leading cause for infertility is endometriosis it doesn’t mean all people with endometriosis cannot fall pregnant this doesn’t make sense as a diagnostic “tool”. However, following the removal of endometriosis growths many women have improved fertility. But really, it all shouldn’t centre around your plans to have babies that is stupid I hate when doctors ignore the pain we experience which unfortunately is all too common. It is not unreasonable for you to want the surgery for diagnostic purposes and to relieve pain. Sadly it is something we all have to fight for time and again and it’s not easy but well worth it. My advice is to go through all the doctors you have to (I know it is not easy) until you find one who is listening to you and compassionate to your painful experience. Best of luck!
Hello everyone. Sue I agree with Brenna. I to suffer from both Endo and PCOS. I started having pain at 13 when I first got my period. My mistake was I never told anyone about what I was going through. I bleed for 8 days heavy. The first three days were horrible. I was diagnosed with PCOS at the age of 23 and Endo at 26. I just turned 37 last Wednesday, and sadly I need to say I still suffer every single day.
I stumbled on this site by accident this morning while having an episode. And while it makes me sad to see that most women suffer from either or both diseases, it’s good that we can share and educate others about these diseases. And yes every story is mostly the same, but different as well. I won’t bore anyone, but it feels like I’m being held captive in my body and tortuted every single day by my own body. It seems the pain/ epidoes get worse as i get older.
Sue please don’t wait. I was told I couldn’t have children. I did get pregnant in ’08 but had a miscarriage. It damn near destroyed me. It a stuff pill to swallow to be told you can’t get pregnant finally excepting it, to find out you are pregnant just to miscarry 3 months later. Anyway I did become pregnant again in ’09 a high risk pregnancy, but we made it through. I gave birth to my daughter in 2010 at the age of 30.
She’ll be 7 next month, so even though the doctors tell us one thing, god has the last word on it at the end. I do want another child, but I think I get one miracle a lifetime lol. It’s just not happening for me and I’ve been trying for the last 3yr😢 Sue don’t you give up, please. Best of luck to all of you women who are suffering from either Endo, PCOS, or both. Something will help us, we just gotta keep strong and keep fighting to find a permanent solution. Ladies please don’t give up…..let’s keep fighting!!!! Miracles and blessings to us all!!
I had my first laparoscopy yesterday and they found endometriosis. It’s a relief to finally have a diagnosis. Thank you to everyone who shared their experience and encouraged me to go and have it done. At times I thought I must be over reacting and that I am wasting everyone’s time by going in. My family however pushed me to go and do the surgery and thank goodness I did. All of the best to the rest of you!
You just need a good gyne consultant. Are you still going through your GP? If yes then demand a referral into specialist clinics. I had bloods taken in my GP surgery which prompted a referral .. from that day my endorsed was diagnosed, surgery took it away but then it creeped back and I’m currently on an enforced menopause which has made my endo symptoms completely disappear.
Be pushy, ask for what you need and stop suffering.
Kind regards, Kelly
I was told the only way is through exploratory surgery, I went through 10 years of pure hell before a doctor suspected it and referred me for exploratory surgery! Even then the stupid doctor said ” well I don’t think you have it and dr so and so does so I’ll I’ll take a look ect!” I said ” why are you so definitive that I don’t have it when you haven’t looked and I’ve been dying so sick and in pain for years and the medical field just can’t leave me like that!” When I awoke she says ” well ok Dr Moore was right we will schedule surgery!” But of course I know now from being in endo groups laser laps are useless, the gold standard for any chance at a normal life or relief is excision!
Sue, to answer your question yes only diagnosed through laparoscopic surgery. Mine was.😢
Sue, I have endometriosis and was diagnosed when I was 29 thru a lap surgery. My doctor said it can only be formally diagnosed with the laparoscopic surgery. Plain film radiography, computed tomography (CT) scanning, and MRI are not sensitive for the diagnosis of endometriosis.
However, there are symptoms (look it up online) that will make you think it is definitely endometriosis. If you have most of the symptoms, then, it’s probably endo. You do not have to wait until you get pregnant. Please get a second opinion if your doctor is not listening to you. There are other doctors who care and are more competent.
I had a hysterectomy due to a huge cysts on one ovart then they doing another one smaller (softball sized) my ovaries and uterus were all removed along with my appendix because endometriosis was found all over… I am still having one symptom.. I call it “burning back” my lower back feels like it’s on fire.. it’s the only way I can describe it.. whether I sit stand or lay down this will not go away.. even my norco pain medicine doesn’t take it away.. is it possible that this is endometriosis somewhere the doctors didn’t check when they did my laparoscopic surgery? I am not asking because I think my doctor lacked in any way.. I am asking because I was told endometriosis could have spread to parts unknown. And if that’s the case I need to know so it could possibly be treated. My doctor says no hormones because he’s worried the endometriosis could spread.. I just would like an opinion not a diagnosis.. thank you
Hi Betsy, I just saw your comment and had to respond because what you described is so similar to my pain. I also experience “burning back”. I was recently diagnosed with endometriosis and we’re thinking that these episodes of fiery back pain are linked to my endo pain and severe cramping. Heat has helped me more than anything, and some stretches/yoga ease the worst of it. Would love to hear if you have found any other kinds of pain relief.
I am 27 years old and I’m going for a laparoscopy in 2 weeks I am in agony about 1-2 week before my periods due i get Serious Achy legs and back to the point I have to lie in a really hot bath to ease me a sharp needle type pain as if something’s stuck in my womb and serious headaches and when my period comes I get serious heavy periods and the last one I was on for 20 days does this sound like endometriosis????
I’ve read several articles about endometriosis and ovarian cysts in hopes to find some emotional relief with my struggle with the disease. This article I find very well written, not overly descriptive and most importantly, accurate. I’m 25 years old and I was diagnosed with extensive endometriosis two years ago. I suffered with horrendous periods for years and just assumed it was biological. I finally was referred to a specialist after being hospitalized with severe dismenorriagh. While seeing the specialist, an internal exam was done and there was no visible sign of endometriosis. But to be sure, I was advised to have an exploratory laparoscopy. Fast forwarding to my surgery, not only was as described “extensive” endometriosis found, but cysts both on my ovaries and not. My surgery was on August 18th, 2015. The recovery took about 3 months as there were a few complications afterwards, but once healed I felt relieved as I was assured by my doctors that it was unlikely for it to reoccur as he was extremely thorough. And in the event that it did, it would likely be a few years. Yet, that unfortunately has not been the case. I recently underwent another surgery this past November. I went without pain for 10 months before it came back and I suspected I had endometriosis again due to the horrific pain I was once again experiencing. As it turned out, not only did I have endo and cysts again, but I was also pregnant. My partner and I had been trying to conceive for 5 months prior to this last surgery. However due to adhesions fromy first surgery and a cyst blocking my Fallopian tube, it was eptopic. In pre-op just minutes before seeing the anesthesiologist was I tested for pregnancy via urine test, but it was apparently negative. Only after I awoke from surgery did I learn that I was pregnant. It was not only shocking, but devastating along with angering. My surgeon, who has now operated on me twice did multiple surgeries in one. Endometriosis removal, cystomectomy, cauterization, hydrotubation, D&C, they removed my one tube and half of my ovary. I would have thought that my surgery would have stopped the moment an eptopic pregnancy was evident and I would have been advised of the situation before they continued on with removing some of my insides. I’m still affected by it as it’s only been 3 months since, and I’m still enraged with knowing that my chances of having a family have vastly declined since. After this last surgery, I also experienced temporary atrophy, along with nasty post op infection for which I was hospitalized for 2 weeks on IV antibiotics 5 times a day. With all the antibiotics I was on, I also developed a UTI, BV infection, and a yeast infection at the same time which was horrendous. Finally just after Christmas I felt like the worst was over as I was finally out of the hospital and had minimal pain and started feeling normal again you could say, then my time of the month came or so I thought, but extremely heavy, and then I hemmoraged so severely I had to have a blood transfusion. Thankfully that has been the last Issue my body has gone through since the surgery, but I certainly still do not feel the same. Furthermore, I find myself thinking often that I’m kidding myself to think that this is the last of it. On the bright side, I have wonderful and thorough doctors that I see a few times a month. And since my surgery I have had monthly ultrasounds to make sure I’m healing properly. So far so good, but none the less it is still very frusterating. I see a fertility specialist this coming Wednesday to discuss my options and I am really hoping for some good news.
I’d like to add that this is the first time I’ve commented on any public forum, and I am generally not one to share my personal info. So I apologize for the ramble, but the few who are close to me I find hard to talk about my experience with the disease, because they themselves are unable to relate. Hence my desicion to post about my experience with it on here to others who can relate.
As someone who has only knowingly had this disease for a few short years, I’m finding that it’s already taken a significant toll on my life. I’m aware many woman have knowingly had the disease for many years and suffered significantly, and I would like to ask suggestions on coping mechanisms from dealing with the despressed and fear of being unable to have children, as know I’m not alone in that.
To every woman suffering with this disease, my heart truly does go out to you. I’m sure all of us wish that it was better understood and there was more support in place for the hardships that come along with it. It is indeed a seemingly lonely, depressing and misunderstood disease that truly lessens our qualitys of life significantly.
Thank you for taking the time to read this. If any of you have questions about surgeries as I see some of you are considering having it, feel free to ask me and I will do my best to answer with my knowledge and experience. I feel the need to add that my complications after surgeries is not a common occurrence from what I’m aware of, and that after recovering from my first surgery until reoccursnce, my quality of life did improve significantly.
I had 6 kids with Endometriosis and my sister cannot have any. Every woman in my family has it and had lost children. Thank you for sharing. I will be praying for you all. God bless.😚
To everyone here my name is Melissa. I am a 37 year old mother of 6 and suffer Endometriosis. My story is somewhere on this page. I’m writing to you again not only to let you know there’s hope in Jesus. He gave me 6 precious children with this condition. Also, I can’t stress to enough the benefits of ” Endovan”. Please everyone research Endovan especially if you want to reverse symptoms, lose weight, feel great, and get pregnant. My last baby was conceived on Endovan ( his twin didn’t make it sadly). He is one now. Please, please listen! What do you have to lose? It worked for me. Read the stories. Go to Endovan . God bless. Jesus is our ultimate healer. Have faith. I’m a miracle and so are you. Remember Endovan. I don’t sell it, just tried it! It works or money back cause it’s a little spendy but worth every penny!
Hi my names Sarah and I’m 27 years old. I go for a laparoscopy in 2 weeks time and I’m quite scared :(. My first ever period was great and then my second I was on 18 days in total and ever since I have been getting very heavy long periods with pain that’s horrendous but I’ve noticed before I am due on my period I get pains in my legs that ache like toothache a sharp stabbing pain in my womb that feels like it’s clipped onto another organ along with serious migraine that bad I’m sick my lower back hurts all the time and sometimes I get a tugging feeling in my groin 🙁 does this sound like endometriosis as I’m starting to think will it be worth me going for a laparoscopy??? And advice would be appreciated
That is a possibility. The laparoscopy will answer it all and if it is endometriosis they can clear some of it up while in there. I have 2 laproscopic surgeries to clear up mine with in a 4 yr span.
Hey how u doing?Think so go to doctor see what’s going on with body.I was having problems with mine alot finally found out had Endometriosis stage 4 but with God glad know what’s going
I had weird experience with my period ,s hurt so bad and then all of studded it stop for 1are almost 2years and when it came back it was worse then ever blood clots heavy tampons couldn’t hold it I just lose my job I felt very bad
I am terrified of doctors so I do not have an official diagnosis but so many of these symptoms sound like me. I’ve had painful periods since I started at 12 years old (I’m 28 now). I get charlie horse feeling cramps randomly in the rectum and along the left side of my vaginal wall. They can hurt for a few moments or hours! They will even wake me up at night and it is misery. Recently my back and hip on the left side hurt and almost feel like torn muscles burning. I can barely make a bowel movement when I’m ovulating or on my period, the pain is too much to push through. It hurts to sit down, feels like stabbing pains in my pelvis. Please someone advice if this sounds like endometriosis?! I don’t want to go to a doctor unless this sounds like it. My insurance in minimal so that makes it all even worse thinking I’m going to go into debt. Thanks for any help.
This does sound like endo or even cycsts. I have both I was up all night because my legs had this asleep feeling. I am in pain with cramping and aching like 70 percent of everyday with pson ranging from 5 on the Spain scale to a 13. It’d so frustrating! I hope you find answers. Even though there is no cure
. I found food is responsible for a lot of my flare ups. I can’t eat red meat or drink alcohol or eat beans or anything they hives me gas. It causes excruciating pain
I will look at my diet thank you bc I have major acid reflux issues.
Yes. Same symptoms as me. I lost right ovary… left tube… had tons of endo…. and had my appendix removed at my laparoscopy last week. Im so upset a week later because everything that hurt now hurts worse than ever. Call me impatient i guess. It takes at least 12 weeks to feel better from excision… but im so tired of hurting in my back im severely depressed that i didnt get any instant relief from the surgery. Please go to a gyn dr. …. i tried to figure out what was wrong with me for 3 years. .. because it took so long to find a good gyn dr to look into my pain…. i really am gonna have a long recovery… if i have one. So so depressed
i understand how you feel Carrie i had a partial hystectomy i only have 1 in half ovarys left i thought all my pain will be gone now my pain is worth and this is 8 months since i had the hysterectomy now its all starting again with having tests and I’m 45 years old had endo since i was 13 years old all my life have been in pain theres no ending
I have suffered from endometriosis as well as ovarian cysts for the past 4 yrs. My doctor said the absolute permanent relief of pain would be for me to have a hysterectomy but because I still wanted children she (I believe) did all she could do to avoid that. I began with just the simple pain management but didnt like the way the drugs made feel. I had laparoscopic surgery to clear some of it up and then went on to Lupron injections which is considered a chemical menopause. That alone shrunk down my cysts and made my pain non existent. There were hot flash and mood swings but i was also prescribed
estrogen to minimize those symptoms. I finally became pregnant in january 2015 but shortly after miscarried. I then went on birth control pills to stop my cycles for a few konths as i still wanted to try and concieve. Dec. 2016 i had to have an emergency surgery due to ovarian torsion where they again cleared up some of my endometriosis. I am now 11wks pregnant..hoping to go all the way with this pregnancy so i can finally have that hysterectomy…At 28 it’s starting to take a toll on me.
Ladies I just want to tell you I am so with you on this. I have had Endometriosis for about 6 years atleast that I know of. My story is very long, so I will try to keep it short. My name d Melissa and I am a 37 year old married mother of 6. At age 34 I was set up to have a hysterectomy, but my insurance denied me and wanted me to go to mental health because to them it was ” all in my head”. Month after month for years I’ve gone into ER nearly bleeding to death. The pain of Endometriosis is so unbearable I cry feeling like I’m repeatedly in labor over and over. The sciatic pain, hip pain, body aches, headaches, back pain, horrifying cramps, etc. Absolute nightmare. Not to mention your family thinking you are nuts or a crybaby. Major physical and emotional damage women suffer and trying to explain it just sucks. I finally got tired of it and prayed. Was was to an herbal supplement called Endovan. It was a miracle. I got off all prescription meds. I became pregnant with twins on the first bottle and lost one soon after in ER when I started bleeding. I had prayed for twins. Of course we were devastated. I was sent to Maternal Fetal medicine for complicated pregnancy and being over 35 ( high risk). Constant monitoring. February 8th 2016, I delivered a beautiful little boy Elijah. Thank God I didn’t have that hysterectomy. I am currently still breastfeeding and just tore my rotator cuff. I sit here in no medication suffering to put my children first. Today I am suffering a really bad Endometriosis period. What you all described as labor. Yep! I feel like I’m dying. I’m debating ER again but can’t take any meds as the baby is still feeding from me. Also, don’t forget the tendonitis and calcification in my rotator cuff, fibromyalgia, and Lupus. Ugh…nightmare! Ladies I feel your pain. I wanted to let you know as soon as I can I will get back on Endovan. It reverses these symptoms and that of PCOS and other things and helps infertility. If you want relief please look it up. You lose weight on it as well. All natural supplement. Be blessed ladies. Prayers for you. My heart goes out to you.💋❤
I’m only 19 but I think I’ve been suffering from this I’m currently on day 1 of my period and I can’t tell you the pain I’m experiencing I have hip pain that shoots in my leg my back is in terrible pain I have right inner vaginal pain. The head aches are keeping from sleeping my family had thought this whole time I hurt my back but then I find out about this. I can’t get into the gynno till march 30th and even then I feeel like they won’t do much to help me
Hi there. I am 24. I have endometriosis. I still haven’t exactly found a solution yet. But my doctor proscribed me a shot. I have to take it every three months… and I think that I missed several periods because of it. Thank God. My luck didn’t extend into this month, but the doc did say that bleeding inbetween the first several shots can happen but that it can eventually eliminate periods (while still having the chance of having kids when the meds cycle out of my system.) Nice thing is that my insurance totally covered it.
The shot is called medroxyprogesterone acetate injectable suspension, USP 150 mg per mL. Something worth asking your doctor about.
Also, if one doctor isn’t the right fit, try another. Keep on going. It sucks. But eventually I was able to successfully transition away from a doctor (who w/ every visit would make me take urine tests–to make sure that I wasn’t pregnant because apparently my word isn’t enough and apparently teenagers are (or were) lawless sex fiends–to a doctor who would listen, be understanding, and did everything within her skills wheelhouse to give me a diagnosis. To give me a diagnosis there was a small surgery. Endometriosis doesn’t show up in a ultrasound.
The shot is a new thing that I am trying. Next thing on my list is too try to change my diet. And maybe try Evening Rose Oil capsules…. just saw that bit while I was reading thru the comment section.
If one doctor can’t help you. Try another. And then another. Some doctors aren’t the right fit. But things can be done. Its not perfect. Nor it is certain or foolproof. And God knows that I wish that I had access to morphine during my really bad days (800 mg motrin REALLY doesn’t do the trick for me, sometimes it works, sometimes it doesn’t) But the nice thing about this day and age is that technical and medical advancements happen all the time. Things have slightly changed since the last time that I visited my OBGYN, ie. the shot. And the maybe hopeful elimination of my periods for several years. And hopefully during those several yrs, medical advancements will have been made. And hopefully I will be able to find a way to work even on those
This was a very well written article.
I suffer with endometriosis. It took about 3 years to come to a conclusive diagnosis, they tested me for gluten intolerance, lactose intolerance, and a whole bunch of other things. I had chronic pain daily thinking it was from foods, so I ate very little and lost a lot of weight. I had an ultrasound and they found I had excess fluids in my uterus, so they did a laparoscopy and found I had endometriosis. They removed some of the fluid and scarring on my uterus and I was okay for about 5-6 years.
But now I am laying in SEVERE period pain and terrified that it’s the endometriosis coming back to haunt me again.
Hopefully they can find a cure so women don’t have to suffer anymore.
I have had for about 3 yrs now this on going pain in my lower abdomen.
The only way to explain it is a serrated knife scraping my uterus it feels that bad and it will hit me all at once for about 3 weeks of every month my legs ache my back is hurting so bad(feels like back labor) when I try to sleep the pain is horrible I even have been having to sleep setting up I’ve been to the hospital countless times they always come up with some excuses.. Mid-Cycle ovulation, or it’s your period, and I never start my period I have the nexplanon so my periods are pretty much gone unless I’m around someone on theirs then we sync together
Past 2 years I’ve maybe had 5-6 periods. But it’s not like blood it’s a pasty brownish/red color and I dong even need a pad or tampon just pee and wipe and its there… the Drs won’t listen to me idk what to do!
I’ve told them I need checked for Endometriosis but they ignore me😭 Like I can’t even play with my kids cause I’m always hurting and to touch my stomach or put pressure on it makes me cry…
could it be Endometriosis?
I’m so scared cause for one they won’t listen but not only that I want more kids
You ABSOLUTELY need to see a specialist.
I have NO IDEA why our health care is so messed up!! It took me 2 years!! JUST TO SEE A SPECIALIST everyone had excuses or try this BC try this shot.. but no one really wanted to help me.
or there were insurance issues. The Dr that. Oils help didn’t take my insurance.. so I would switch, then I would have to wait for the insurance to kick in. Then 2 weeks to see the dr. Then 2 weeks for a rA referral to see a specialist
FINALKY I FOUND AN AMAZING DR
Names Dr. Paul Buzad.
I urge you to look him up, and try and make an apt with him. I had my surgery 11 days ago, and he didn’t make me jump through hoops!!
LOOK HIM UP
Try and make An apt with him
I am 29 years old and I’m preparing to have a total hysterectomy in May. They also are taking my ovaries and cervix. I have tried every birth control known to man and Lupron depot injections. I was diagnosed when I was 16 and I am ready to be removed from this pain. I am excited to be away from morphine and I am even more excited about regaining my freedom.
I do have acute back pain that is unbearable. I have been diagnosed with stage 4 and suffered for years until my insurance changed and I was forced to see another Dr and she took the time and finally figured it out. I feel a pulling sensation in my lower back that does not allow me to stand up straight and it last about 7-10 days and happens about 1 or 2 times a year. This time I had to cancel my cruise I planned for months and the boat leaves tomorrow and I am sitting on a heating pad looking at my packed suitcase. I am glad I purchased the travel protection bc I will get all my money back after a couple weeks and paperwork to prove I’m not up to part (irritating) but necessary to get my money. Any last minute things I should try so I can maybe still go I welcome all suggestions.
Thanks for listening.
Sincerely,
Pain w endometriosis ruined my trip
Ive been ongoing with heavy painful periods since i had my son last may and i had retained placenta for 2 weeks. My son had anencephaly so he was still born. I had 2 D and Cs. One manual and one operation. Since then ive been in agonising pain and really heavy bleeding. Im worried the infection has caused me to have endo?? Ive been fertility clinic as we have been trying to conceive for nearly a year and nothing. Ive had 3 previous pregnancies only one child out of it. Shes 7. Im getting no answers about whats going on with my body. Each month is a struggle with stress of not getting pregnant and the pain im in constantly. Can you help me to as why? Thank you
I am 57 years old have had endometriosis for years work as a cook it involves a lot of lifting running all day long back and forth I had my last period in Jan 2017 I supplement with sea buck thorn oil omega 7 for uterine health however as of the past two days I am experiencing twinning on and off in the groun in addition to my perpetual siactia and neuroma of the foot that the dr tells me is coming from the sciatic nerve into the pelvic region and help u can offer will be appreciated thank u
I think this is what I am experiencing…it feels like a knife is jabbing up into my vagina & into my pelvic area even my rectum & it just keeps stabbing….even when the sharp stabbing stops I feel sore as if I have been punched in the stomach & pelvic area repeatedly. It takes my breath & I use a heating pad ALOT but even it can’t completely ease the pain. It is not constant but can b from 2 to 3 stabs to hours & hours….not to mention my body temperature slightly rises due to the pain & it is effecting my heart rate & BP….basically it’s Hell.
I have a sharp pain in my right side two times within a week and a half and sharper the pain gets I feel like I am going to pass out.
I HAVENT BEEN DIAGNOSED WITH ENDOMETRIOSIS, BUT I AM HERE ASKING FOR ANSWERS I HAVE BEEN TO EVERY DOCTOR AND HOSPITAL I CAN THINK OF AND THEY ALL JUST SEND ME AWAY WITH SOME PAIN PILLS AND ANTIBIOTICS BUT THE PAIN NEVER GOES AWAY I AM ALWAYS HURTING IN MY LOWER BACK AND MY ABDOMINAL, I FEEL LIKE SOMEONE IS SCRAPING MY INSIDES RIGHT ABOVE MY VAGINA, AND I FEEL ALOT OF PRESSURE ON MY OVAREA WHEN I SIT DOWN IT SENDS PAIN SHOOTING DOWN MY LEGS AND HIP IT HURTS SO BAD AND I HAVE BEEN BLEEDING FOR ABOUT 6 MONTHS NOW AND IT HASNT LET UP AT ALL. HAS ANYONE ELSE EVER FELT LIKE THIS BEFORE I FEEL LIKE IT IS DRAINING ME I HAVE NO ENERGY LEFT WHAT SO EVER IT HURTS TO WALK AND STAND FOR A LONG PERIOD OF TIME AND I AM ALWAYS SO BLOATED MY STOMACH IS ALWAYS SWOLLEN LIKE I AM ABOUT 5 MONTHS PREGNANT. PLEASE ANYONE HELPL ME
I’ve had painful and heavy flow periods for almost all my life, I am 27 years old now and although the flow has decreased I still get the pains. What I have noticed is a pattern, I get these needle pains on my lower right side or middle upper side of my stomach. I also get it when not on my period. I’ve gotten tested, but nothing. I wondered if it could be Endometriosis? Could you give me some advice on it? I can’t lay on my side I will feel nauseous or get needle pain or feel pressure.
Hi iam khanyisile I have this symptoms of back pain leg hip BT my problem I don’t go to period because I am using injection so my problem I don’t understand what going or it will decrease the chance of having baby iam confused plz help
This is me to. I had the pain from the age of 13 when i first started getting my periods with no answers intell i was 17 almost 18 i have had two surgerys and im still in pain the firat two to three days of my period are hell as i wright this im in a ball trying to get the pain to go away it’s hard. Even more so when your other half ( boyfriend ) does not understand that sex hurts. Im at a loss for what to do im really thinking about another surgery and having them just take everything out but im not sure
Hey I’m 25 I’ve been having this leg,ovary and lower back pain for more then 2years getting up in the morning is even work the pain hits me like crazy and it’s all on my right side sometimes my leg don’t want to move I don’t know what this is but I’m getting scared now …
Sounds like my symptoms. I had a lot of endo… lost right ovary… left tube… had my appendix almost burst during surgery and had it taken out. …. get to a gyn please
I dont know what this is i had a pain that went across the left side of my hrad then .y legs and arms gave out after that i started having problems with a bad smel in my peorid then i started having bacteria in my vagina every month i had this they put me on flagual my body was already having muscle ache really bad ones my nerves in my legs got bad i started sweating or havi g bad chil my ears srated to ring with tbis i could sometirs tazte it in my mouth my eyesite is bad im always feel faint i have hit tbe ground from tbis ireally need help when i take my meds it makes it 10 times worst im in pain every day i stop taking my meds to see if i would feel better not teally but i dont hurt as bad but its still tnere all day it starts around 10am and stops around 7pm help me
I just got my laparoscopy operation two days ago and I wished I knew this was a treatment option many years ago. For years I was told by doctors to just take an increase of Motrin. But at some point you are just drugging yourself because my tolerance for the pain was so low I had to over medicate just to get through the day of school or work. I was fortunate to get pregnant twice but it took a lot of planning. One pregnancy was successful and he’s now 14. The same age I was when I began getting terrible endometrial pain unknowingly. So as the years went by I just accepted this was My fate as unfair as it made me feel. Fast forward many years I tried herbs, acupuncture, massage, chiropractic treatment- nothing worked. Not even a vegetarian diet helped. So at age 38 my doctor informed me about laparoscopy and ablation. I chose to put it off why I don’t know, but two years later I had it done. I’m looking forward to the relief. I can’t speak of it now, but I am hopeful that it will give me many years of needed physical relief and emotional relief. I cannot stress enough that you have to advocate for yourself. If it is unbearable for you to move, work, or use the bathroom, then chances are you have it and it’s not regular menstrual pain. It’s abnormal to go through this monthly in a vicious cycle of widespread pain throughout your body. I listened to my body and followed my instinct instead of ignore this silent illness. Infections and genetics are common causes of endometriosis, so it is not a thing you can do but perhaps seek an experts treatment. Do yourself a favor and get the laparoscopy performed to rule it out, but based on what I’m reading most women probably have something going on whether it be cysts, fibroids, polyps, endometriosis scar tissue, POCM. If you can afford it get it done. Spread the word tell someone. My nearly twenty five years of suffering were unnecessary.
In August of 2016 I had a baby the doctor ended up leaving some of the placenta inside me and ended up doubled over in pain well I went and had a d &c procedure done and after that my pain in my stomach was worse they did a scope amd colonoscopy trying to figure put what was wrong I had adhesions in my liver well my pain gets worse and worse I have shooting pains that have me doubled over my period last from a month to two months and I have tissue come out of me continuously now I have cyst forming on my ovaries my Dr blames it on my birth control but the problems started way before the birth control I need help any advice
Am 42 years old with 3 kids and was diagnosed when I was 35. The first time I experienced it I was awaken by extreme abdominal pain to the point I passed out and ended up in the ER.
Every month since then the pain and my symptoms are different. During ovulation I experience cramps like symptoms then 10 days leading up to my period is the worst. I suffer from fatigue, extreme back pain only when am sleeping at nights and getting out of bed in the morning. Sometimes high appetite, leg pain in the upper thigh area and headache. Every month it’s different and gets worst. Sex can be very painful also. When I actually have my period I hardly bleed and only for 2 days and after my period I get this annoying pain that just comes and goes on my left side below my stomach. It’s very frustrating and am grateful to have such understanding family cause during that time on days my body feels like I’ve been run over by a truck so I stay in bed. I exercise daily try to eat healthy but it helps as I lost some weight also. It is a disease that I just don’t understand and my doctor said it’s only gonna get worst as I get older and it is.
45 year old, 2 kids (age 24 and 22) but I’ve had endometriosis since i was a teenager….nothing touches my pain (constant pain every day in my back, left hip and lower abdomen)…endo is on left side but scans have shown cysts on my right ovary and in 2012 they found a fibroid in my uterus….I bleed for 2 weeks straight, stop for 2 weeks then bleed for 30+ days stop for 2 weeks and start the whole thing over again….I guess I’m looking for advice.,..I don’t have health insurance so I can’t go to the doctor (most around here won’t even talk to you if you don’t have insurance). I have no family history as all the females (besides myself) on my moms side all had hysterectomies before age 35…I figured menopause would kick in soon but here lately, the last 4-5 months, the bleeding is getting worse and more painful. I am tired of being in pain every day
Have you tried your state health insurance? If you do enroll, I’d look immediately seek a endometriosis specialists did possibly getting a laparoscopic procedure, ablation, or a hysterectomy. I know how you feel. It seems like it never ends but there is relief out here. I wished I had looked into it sooner.
My daughters has been dealing with horrible pains throughout the month prior to her period and just as bad for the first three days of her period. A doctor finally told us he is pretty sure this is what she has and put her on birth control which helped at first but now month 4 and the pains before her period are back. She has been dealing with this for years and she just turned 16 and ends up missing a lot of school and going when she just can’t miss anymore and suffering all day long. Extra strength Tylenol and Ibuprophen sometimes help but take a while before they start to work. I’m trying to get her back for more tests and just found out that my doctor is booked till Christmas so I’m hoping they get her into see a gynec. soon. I’d hate for her to have a hysterectomy since she is so young. I am so frustrated and worried about this being something else but all of the symptoms point to this and didn’t start till her first period at the young age of 10.
Have you tried changing their diets? Going gluten free and vegetarian diet helped me a lot. I’m pretty sure going completely vegan will help me a lot more but i’m not ready to give up meat completely yet. I try to avoid red meat though. Also, I’ve been taking Endovan for 7 months now. It helped with all the pain associated with endo like lower back, hip and leg pain. It’s a little expensive but for me, it’s worth it. I’m not completely pain free yet but it’s way better now and I only have pain (milder pain than before) during the first 3 days of period. It’s tolerable pain. I take pain meds only during my period. I can still go to work also unlike before that I have to miss usually the first 2-3 days of work.
Hello All! I’ve been struggling with these symptoms and , probably not surprisingly, no doctor really hears my cry. My MAIN symptom, besides feeling increasingly depressed, moody, and bloated as my period approaches is stomach PAIN, that also increases significantly the week before my period. It seems like I can’t eat anything. I was diagnosed with “gastritis” nine years ago. (How non-specific that diagnosis is) My question is: Do any of you suffer from extreme stomach pain with eating? Drinking? I have varied my diet so much and tried every elimination, combination diet. I thought I could possibly be sensitive to wheat or dairy, so I have eliminated those. Had all food allergy tests done. STILL stomach pain. I don’t really see it written anywhere, but is this connected?!? Thank you for your responses 🙂
Endo feels like disapointment,It feel’s lonely and depressing. It hurt’s in way’s i often can not describe. It feels like being in full on labor at it’s worst.
Example of a bad day:
My spine feels like it want’s to just fold up and collapse.
My hips feel like my legs have been smashed deep inside them by my legs. Like a hammer just keeps smashing them deeper and deeper in. My stomach get’s so much pain i feel like vomiting. It hurt’s so bad standing up straight feels impossible. My legs hurt so bad i lay restlessly in bed rubbing them with eachother all day when i get up one kinda drags because my legs are so weak. My vagina feels actual contractions labor contractions.
My good day’s are often spent crying because i know the bad day is coming.
*I am alive but not living.
*Endo is depression.
*Everyone thinks your lying about your pain.
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Your blog is really helpful! I am 20 years old, going to college and working. I have been struggling with endometriosis for the past three years but haven’t found anything that seems to help with the constant pain that i get every day. No one really believes that I’m in pain all the time because i try to hide it but it’s constantly there. I loose friends because i can never hangout because I’m either really exhausted or in to much pain to hangout. I just don’t know what to do anymore.
I have had chronic back, hip and abdominal pain for 9 months. Scans say i have slight thickening of the endometrial lining. Im tired and sad with no relief in sight. Ive had every scan and blood test known, been to chiro, physio, massage. Could it be endometriosis?
This is so well written, thank you ❤️
Im seeing a gynae for the first time tomorrow to determine how bad the girly bits are. Im 48 but am happy to have a full hysto if the pain will go away. Had severe back and stomach ache for a year, every test under the sun. MRI, CT, ultrasounds, bloods, endocope, colonoscopy, now the gynae. 12 months of constant pain ranging from mid to high.
Oh wow this is the best piece of written work on endometriosis I’ve found relating to what is going on with me at the moment and no one is taking an notice of my condition.
I’ve had endometriosis for twenty years. I’ve had many medications and surgeries nine of which lasted unfortunately. I was very lucky to not have my fertility effected and have three children. My pregnancies were very difficult and I then was diagnosed with adenomyosis after having my last child by c-section. I decided to fight for a hysterectomy at 33. I knew it wasn’t a cure but hoped would make it more manageable. The endo is now everywhere including my bladder, bowel, kidney, sciatic nerves and hysterectomy site. I have been on zoladex for 2 years this time and it’s no longer working. I’m so fatigued that I miss appointments, I can’t work so am struggling financially, I’m getting divorced and my ability to care for my children is severely effected. They are reluctant to operate again because it will be the tenth time and adhesions are a major concern. So now codeine and morphine are my options until something new comes up. I’ve always been able to muddle through knowing it would get better. Now it isn’t and I am out of options.
Jess I hear you. I’m so sorry you are going through this and I hope you have gotten some relief since you posted this. I too have endometriosis and found out I had adenomyosis from MRI. I too recently had a hysterectomy (I’m 38). I knew it wasn’t a cure but hoped it would help. I think I have adhesions in abdomen (or endo still) which started about 3 months post-op. I’m trying chinese acupuncture and same guy is trying to break up fascia in that area (painful to get done but think it might be worth a try. Just please know you are not alone in this. It consumes me most everyday and I try to get through the day and feel blessed when I get a pinch of relief even when its short lasting. Nobody would know what we go through daily and I hope no one ever has to. I really feel stress exacerbates this disease and I’m still trying to find ways to make sure I’m rested and reduce stress if possible. I will pray for you.
Is this pain everyday or only during pms? Should I ignore it if it’s only during my pms and just keep treating with pain killers? I’m confused
I have had ‘stage 4’ endometriosis since 1991, and every medical ‘procedure’ i have had done has made things a lot worse. I went in for a laparoscopy in 2003 after my right ovary was protruding from my abdomen, the size of a softball, and woke up with the ovary gone and the doctor trying to give me hormones that I specifically said I didn’t want. Then Lupron caused me to go into menopause at age 26, which was horrible. Finally, my PCP began treating my pain with opioids that really worked. I could get up and go surfing like I used to as a teen again. After all the hype about opioids, the AMA doesn’t consider the number of chronic pain sufferers who really need them to function. i have tried every endo diet out there, every hormone available (14 in all with awful side effects), and have been to 29 ob-gyns. None of them helped me except one who worked with a nutritionist from Korea. I was diagnosed with candida and the treatment of taking nystatin with diflucan for a month really cleared it up. I just don’t eat bread anymore and it doesn’t come back. Now am going through perimenopause symptoms and the pain is unbearable without opioids. I bulk up on them when I have ‘ghost periods’ and horrid lower back pain from bowel endo. Remember that there is no medical cure for this disease and that doctors who only go by the book won’t help the condition.
Knowing the general symptoms as well as the fact that it’s different for different people can help people recognize the possibility that they have endometriosis and get help. But yep, Jess and Margrath seem to represent opposite ends of the spectrum between moderate pain during pms and a multi-decade struggle that defies common treatments.
Hello Michelle,
Thank you for this blog and some personal experience on your end. I haven’t been officially diagnosed yet but I am certain the pain and symtpoms I deal with is Endometriosis! My obgyn has sent me to a gastrologist and for all sorts of other tests (which check out fine) but has never recommended the laparoscopy. Did you seek out a specialist for that or did your obgyn move forward with that test/surgery?
Any insight would be helpful! Thank you!
-Ashley S.
Hi
Search for a specialist in endo please don’t go to a regular gynaecologist I have seen that many , they don’t listen to you they will try anything to pass you around fobbing you off . Have you joined Nancy Nook on face book . I payed to see a specialist then the op was done on the NHS as he did treatment on NSH and privately and I got in quicker .
Hope this helps
OMG!!! I’m literally in tears right now. I’m 37 4kids and all my life has been a painful battle. From painful periods, pregnancy stopped having intercourse it hurts so bad to losing jobs not being able to proceed with everyday life. I’ve suffered rectal pain only to be sent home from numerous ER visits and doctors visits like I’m making this stuff up. Being told so many different things are wrong with me to it’s just being a woman and deal with it. Many times the pain and emotional damage was so bad I thought of ending my life!! This article has revealed what’s been my problem all my life. Now I know how and where to get treatment. Thank you guys so much you’ve changed my life as well as my family.
Hi Keiauna isn’t it insane that we are passed off as being hypochondriacs? I’ve too have suffered with Endometriosis since I started my periods at age 12 I was told it’s normal. I didn’t conceive for 8 years of trying I finally had 2 boys one of the labors I almost hemorrhaged to death! It was awful it all made sense when I finally got diagnosed from a specialist dr in San Francisco everyone other dr I saw wanted to do a hysterectomy but she actually knew that wasn’t a cure, there’s no cure just pain management. I too have worked many jobs because of being sick every month to feeling fatigued. I know what you’ve experienced I understand you sending 🤗 hugs.