Endometriosis: what does the pain feel like?

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:

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.

804 responses to “Endometriosis: what does the pain feel like?

  1. Kerri

    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 !!

    • Stephanie

      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.

  2. Mary

    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

    • Joy

      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.

      • kisha

        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.

    • Britt

      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 🙂

      • Britt

        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.

    • Carissa

      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.

      • robyn chapman

        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.

    • Mikki

      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.

    • Hannah

      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.

  3. Christine

    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

  4. Stephanie

    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.

    • Brooke

      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.

  5. sam

    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.

  6. Sophie Hughes

    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?

  7. jacqui

    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.

  8. Brittany

    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???

    • Brittany

      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.

      • Brittany

        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.

  9. Eilleen

    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.

  10. Carissa

    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…

  11. kenzi

    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.

  12. yomila

    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

  13. Jenn

    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?

    • Jenn

      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!

  14. tawnya

    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 🙁

  15. Zara Pemberton

    Had first lap today been diagnosed with endo. They removed it all that they find.

  16. Brooke

    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?

    • Kerri

      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.

  17. Sandra

    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.

  18. Emma Davies.

    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.

  19. mona

    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?

    • Nicole

      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!!! 🙂

  20. Nicole

    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

  21. Carissa

    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.

  22. A

    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!

  23. shelley

    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,

    • Nicole

      Alo)(a Shelly! Only you know what your body is calling or asking for. Listen to your body and give it what it wants 😉

  24. NW1

    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 🙁

    • Nicole

      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.

  25. Lauren

    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.

  26. Christy

    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.

  27. Elly

    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.

  28. Katie

    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?

  29. Jessica

    Hi Sophie. I Have The Same Exact SYmptoms. Curious if You Have Found Anything Out? HoPe All Is Well.


  30. josee

    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 !

  31. Priscilla

    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.


  32. Juanita Ortiz

    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?

  33. 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 🙂

  34. Sarah

    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

  35. Kim Kell

    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

  36. Mikki

    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.

  37. Rachel

    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!

  38. Amy

    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. 🙁

    • Amy

      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.

      • Amy

        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.

      • Amy

        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!!

  39. Yam

    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

  40. Martha

    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

    • shelley

      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

  41. 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.

    • Amy

      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!

  42. Kelly

    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?

  43. Kelly

    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?

  44. Kelly Taylor

    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.

  45. jennifer

    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…

  46. Joana Nieves

    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.

    • Leanne

      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!

  47. Leanne

    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!

  48. Andrea Burkhart

    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!!

  49. Madalyn

    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 😖😰😣

  50. Emily-Jade

    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

    • Aneila

      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

    • Kay

      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

      • Lisa

        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 🙂

    • Brenna

      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.

    • Kayla

      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

    • Melissa

      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….

  51. Beth

    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

    • shelley

      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

      • Beth

        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

    • Tina

      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.

      • Beth

        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.

    • Paula

      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?

  52. nikki

    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

    • Beth

      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

    • sinead

      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..

    • Paula

      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…

  53. Melissa

    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!

    • Tina

      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

  54. Tina

    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).

    • shelley

      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

      • Dawn

        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.

        • Claire Rennie

          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

  55. Christina


    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!

  56. Tina

    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.


  57. 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.

    • Beth

      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,


  58. TracyWoon

    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

    • lisa carroll

      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

  59. Beth M

    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

    • TracyWoon

      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

  60. Carmen *

    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.

  61. Chasity

    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.

  62. Gloria

    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

  63. 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

  64. Sinead

    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 🙁

  65. Krista

    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.

  66. Amy

    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

  67. Alieya

    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.

  68. Claire Rennie

    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 🙁

    • shelley

      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

    • shelley

      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

    • Amy

      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!!

    • Paula

      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.

  69. Jess may

    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

    • shelley

      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

      • Jess may

        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

        • shelley

          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

      • Alaina

        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,

      • Julie Harrison

        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?

  70. Jess may

    Gyno* not gunk

  71. Marisa

    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.

    • shelley

      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

      • Marisa

        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?

        • shelley

          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

    • amanda

      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.

      • Marisa

        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 🙂

    • Marcie

      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!!

  72. Jasmyne

    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?

    • Marcie

      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!!

  73. Wendy

    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.

  74. Kelly

    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.

  75. Kirsty

    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 🙁

  76. Tina

    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.

  77. Marcie

    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.

  78. Julie McVey

    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 !

  79. Lori vliet

    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

  80. Cassie

    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?

  81. Megan

    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

    • lisa carroll

      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

  82. Jazalle

    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.

  83. Jeanine

    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???

    • Cassie

      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.

  84. Tessa

    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!

    • Marisa

      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.

  85. Jeanine

    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.

  86. sam

    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

  87. Alima

    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.

    • sammie

      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!

    • sammie

      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

  88. Ali

    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.

    • Lisa

      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 ..

  89. badgirl

    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?

    • sammie

      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.

    • paige

      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.

    • 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?

      • Nikki Woodall

        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.

    • Nikki Woodall

      My husband has sat outside the restroom and listened helplessly as I scream and cry on the toilet. I understand competely.

  90. sammie

    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.

  91. Tina

    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.

  92. 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!

  93. Nikia webster

    Pain caused by Endometriosis has completely shut me down

  94. ym

    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

    • shelley

      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

  95. paige

    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.

    • shelley

      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

      • paige

        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?

        • shelley

          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

  96. 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!

  97. Nikki Woodall

    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.

  98. donarae dunwoody

    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

    • shelley

      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

  99. Tina

    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.

  100. Ang

    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.

  101. 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

  102. sarah

    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.

    • Isabel SavaraIn


      • 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 .

  103. paige

    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

  104. Jenny

    This was incredibly helpful. It gave a voice to the last 20 years of pain associated with Endo. Thank you!

  105. paige

    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?

    • Ang

      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.

  106. Cara

    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.

    • Lauren

      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!

  107. jessyca suner

    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?

  108. Melissa

    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.

    • crisy003

      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!

    • Paula

      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

  109. sian

    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.

    • Paula

      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….

  110. Alison

    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!

  111. jo

    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

  112. Paige

    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.

    • Lilly

      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

  113. Mag

    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.

  114. mommyinpain

    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!

    • Mumoffourd

      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.

      • Dani

        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.

      • Shonda

        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?

        • Ashley Garcia

          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

  115. Beth


    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?

    • shelley

      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

      • Beth

        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

    • Paula

      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…

      • Beth

        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

  116. edyth

    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

  117. L

    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?

    • K

      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

    • Ashley Garcia

      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

  118. Natalie

    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.

  119. 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 🙁

    • KKcards

      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.

  120. Dani

    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.

  121. Chelsea

    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!

  122. Caitlin

    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?

    • paige

      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?

      • Caitlin

        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!

      • Caitlin

        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!

        • Paige

          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.

    • paige

      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.

  123. matshediso

    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

    • paige

      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.

    • Paula

      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:(

  124. Janet

    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 🙁

    • Paula

      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…

    • Rxnidia

      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.

      • Paige

        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.

        • Paula

          Did u get ur first shot. Mine is on order. How is it going if so?

          • Paige

            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.

          • Paula

            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.

  125. Täna

    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!!

    • Paula

      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.

  126. Paige

    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.

    • Caitlin

      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.

  127. Paige

    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?

    • Paula

      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

      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….


  128. tosha

    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

    • Paula

      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

      • matshediso

        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

  129. becky

    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

    • tiffanykraha


      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.

  130. Sonya Miller

    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?

  131. tiffanykraha

    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.

  132. Miriam Daniels

    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

  133. Jessica

    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.

  134. Madalyn

    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☺️

  135. Sue

    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

  136. 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.

      • Paige

        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.

    • tiffanykraha


      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.

    • Carrie

      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.

      • paige

        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

  137. Did you see an endo specialist and was it helpful? I’m considering one in NY but they don’t take insurance.

    • tiffanykraha

      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.

      • Paige

        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.

        • Paige

          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. :((

          • Paula

            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.

    • tiffanykraha

      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.

  138. Stacey Easter

    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.

    • tiffanykraha


      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!!

      • Stacey Easter

        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.

  139. paige

    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.

  140. Marcy Vaughn

    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.

  141. Karen Abrahams

    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.

  142. paige

    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.

  143. Joy

    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

  144. Monica

    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!

    • Milan

      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.

    • Paula

      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!! 😡

      • Kerri

        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

  145. 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.

  146. Adaris Ortiz

    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.

  147. Caitlin

    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?

    • Paula


      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!

      • Caitlin

        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?

      • Paula

        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.

  148. lucy

    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.

  149. Pamela Anderson

    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!

  150. Tannya

    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.

    • Sam

      Have you ever tried Reiki? Maybe it will help! And that really sounds awful. I hope it gets better for you! <3

    • Sam

      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.

      • nikki

        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.

  151. Milan

    Have you tried endovan? Haven’t tried it but heard it works.

  152. Stacy

    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

    • Milan

      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

    • Katie

      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

    • Estelle Mulcahy

      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

  153. Where can u purchase endovan??

    • Milan

      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

      • Beth


        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.

        Beth x

  154. Denise

    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!

  155. Meredith

    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.

    • Sofia

      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.

    • Katie

      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!

  156. Paige

    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?

    • Paula


      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?

  157. paige

    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? 🙁

    • Paula

      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…

      • Paige

        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.

      • Paige

        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.

  158. 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.

  159. Paula

    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

  160. Nichola

    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!!

  161. 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!

  162. karenzxdc

    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?

  163. Erin smith

    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.

  164. Tracey Hurst

    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!

  165. crystal

    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??

  166. paige

    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 🙁

    • Paula k


      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:)

      • Paige

        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

        • Paula k


          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:)

          • Paige

            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.

  167. Lisa

    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?

  168. ruth

    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

    • Elle

      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!

    • Paula k

      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 )

      • ruth

        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

    • Paula k

      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?

  169. Amy

    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 !!

    • ruth

      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

  170. Deshania Ferguson

    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.

  171. Elle

    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.

  172. Jan M

    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.

    • Tricia S.

      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!

      • Jan M

        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.

  173. Alison

    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?

  174. Paige

    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.

  175. kelly

    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.

  176. Pingback: Living with the Pain of Endometriosis - Dr. Deborah Simmons, PhD, LMFT | Dr. Deborah Simmons, PhD, LMFT

  177. Sol

    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.

  178. Wen

    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!

  179. Nicky

    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.


    • Wen

      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.

      • Nicky

        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?


  180. Only found out I have this and what to know do the injection help? Or should I get them?

  181. nancy mitchell

    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

  182. Christine

    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

  183. Christine

    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

  184. fara patel

    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

  185. 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.

    • Paige

      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!!

  186. Maty Trainor

    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.

  187. Kenzie

    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!

    • Paige

      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.

  188. Tammy

    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!

  189. TL

    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.

  190. MF

    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.

    • Beth

      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…..

      Beth x

  191. 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.

  192. Stacy

    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.

  193. Lindsay

    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!

  194. Shatyrra Reid

    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

  195. cjwaterfield

    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.

  196. paige

    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.

  197. Seoh Oxcani

    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.

  198. Gordon

    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.

  199. Emily

    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.

      • kayley

        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.

    • Tyisha

      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?

  200. Georgina

    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?

      • sarah

        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

  201. Pingback: Does Back Pain Affect Pregnancy

  202. Rachel

    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

    • Eve

      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.

      • Erin

        I was diagnosed and treated in 2009 and thought I was cured but it’s back with vengeance.

      • Gracie

        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!

    • Brittany R

      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.

  203. Ashley

    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.

  204. aimee

    Hard living with condition so painfull and have depression and limited enjoyment with walking with the pain

    • nat

      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

  205. christine

    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 .

    • Paige

      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.

    • Megan

      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!

      • Dollie

        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!!!

  206. sharna

    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 🙂

    • sharna

      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

      • Dollie

        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.

    • Nat

      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

      • Nat

        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.

    • Brittany R

      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!!

  207. Paige

    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.

    • nat

      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.

  208. Jo

    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!

    • Jada

      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…..

  209. CB

    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.

    • Laura

      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…

    • Nat

      I feel for you iv got loads wrong n just wish my daughter didn’t have to see me in the pain 🙁

  210. Jada

    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.

  211. TBanks

    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!

    • Mary

      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.

  212. Shai-ane Winstanley

    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.

  213. Christine

    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.

  214. Lynda

    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.

  215. 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

    • Humaira

      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! 🙂

  216. Sara

    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?

    • Paige

      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.

  217. Kumud

    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.

  218. Pamela Joy

    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.

  219. Lisa

    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.

  220. 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.

  221. Franchesca

    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?

  222. Christa

    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?

  223. Michelle

    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?

  224. Beth

    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

    • Paige

      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.

    • Kimberly

      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.

  225. miranda

    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!!

  226. Rebecca

    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!

    • Humaira

      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,

  227. Sharee

    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.

  228. Jenny c

    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?

  229. margaret whitaker