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.

About endohope

My name is Michelle B. I've lived with endometriosis for seven years and Joint Hypermobility Syndrome for three. Trying to live and work with both illnesses as best I can.

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

  1. Emmy

    I have been goin through all of these symptoms to the point I shake and hyperventilate and my doctor wont listen to me and im struggling to make it through work each day.I am goin to a new doctor but have to wait I was advised to report to the e.r. but I cant afford a e.r. trip everyday for 9 days a month.

    • Caneshia

      I have been dealing with endometriosis for the past 3 months and it has been hell. I have severe abdominal and back pains and my boyfriend said that I shake and shiver at night in my sleep. I have also had so many lab test and blood test done that could not indicate the disease. I also had to switch gynecologist because my first gynecologist did not want to check me for endometriosis even though I let him know that my mom had the disease and the same symptoms that I had. He just kept telling me it was period pain but I got a second opinion. I had a laparoscopy done to prove that I had endometriosis. This article shedded so much light on what we all are dealing with. I am trying to learn how to deal with this disease day by day. I have been out of work for weeks dealing with the chronic pains of endometriosis and it’s tough when you know what’s going on but your job request documentation from a doctors visits for everyday that you miss and if you miss a few hours I’m still in the process of working on my leave to be approved so that I can be ok.. I wish everyone we’ll because this is no joke

  2. Alison Minchin

    I’m sure this is what I have but my doctors havnt considered that. I have had lost off blood test done and scans for kidney as my back hurts and they have come back clear. I’m 55 I stopped my periods in my 40 I have been on HRT since then. The description off these pain r what I have been going through for the last six months pain every day I’m tired and now getting pissed off and getting very tearfull. My Doctors r now referring me to have my bowls checked and my intestines scanned but I really think there looking and testing for the wrong things.

  3. Hope

    I have been trying to find someone in the medical field to do something to help me. I have been in a living hell of constant physical sicknesses and pain from excruciating muscle spasms in different areas of my torso, lower abdomen and legs. Constant exhaustion. Have been repeatedly told I have lots of blood in my urine with no infection present. Loose and painful blowel motions. Sudden enlarged liver. Weight gain and acne that I can’t control. Lumps in my breast and back pains. I suffered severe painful periods with heavy bleeding since my early teens and only helped by the insertion of a mirena after uncontrollable bleeding after the birth of my kids. I was recently diagnosed with ovarian cycts. I have had Endometriosis removed three years ago from my cesarean scar. Every time I saw my G.P about my symptoms of painful lumps in my lower abdomen, I was told it was scar tissue and sent for numerous scans, only to be told its a large mass that is getting bigger with ni further action being taken. Finally after 3 scans and many visits with my G.P, with no diagnosis I demanded a biposy. I have always believed I have had Endometriosis. I had the biopsy and Endometriosis was confirmed. I had two very large masses of Endometriosis removed. This was after years of hell trying to get help from doctors. My symptoms now 3 years later are making my life a painful misery. Muscles spasm type pains that hit me suddenly in different parts of my torso. Chronic painful loose bowel motions especially after eating, blood in my urine, acne, weight gain, facial hair. Dull ache in lower abdomen that never goes away and extreme fatigue and exhaustion. After years of hopless doctors visits, I finally have found a gynecologist who has diagnosed enlarged ovaries with cysts on them. I was also told I would be having a laparoscopy and could potentially be facing a hysterectomy or surgery to remove what Endometriosis they can, along with Hornone treatment. Please forgive my essay long lifestory but I am scared and desperate as to what I should do, as I have read conflicting things. Any feed back would be greatly appreciated. I am 36 years old and feel so unhappy with this situation. Like all of you poor ladies who suffer from this hell I just want to be well and pain free.

    • Alison Minchin

      I relate to all that u have said my Doctor has no idea I’v had so many blood test urine test scans. I’m now booked in for a MRI and a endoscopy. I have mentioned endometriosis but my Doctor said it wouldn’t b that because I havnt seen a period for 10 years and I have been on HRT. But every month I will sill get the period pains. I get pains every day some mild than others. It’s making me so depressed. I could do with a gynaecologist to have a look. I also suffer from fibromyalgia which can also cause pain but this pain is definitely a period like pain.

    • Jenn

      A hysterectomy does not cure endometriosis! You have to realize that you will go though menopause and the endo can still come back! I’m 35 now and had a hysterectomy 3 years ago but they left my ovaries and my endo came back! I have it on my bladder again and it sucks! I know how scared you are and how bad this disease sucks but everybody I talk to regrets having a hysto! At least they left my ovaries so I didn’t go into menopause! Goodluck and hope this helps a little!

    • Paula

      Hope & Jenn
      I chose to have a hysterectomy at 36. I have all the pain that Hope talks about. It starts at my rib cage and goes down to my feet. It seems a lot of people on this site have the same problems with leg & hip pain and I wonder if if its from the Endo growing into the muscles and nerves. I went to a reproductive oncologist and she told me if they left my ovaries I would have to have surgery again in a year and a half to two years because the hormones feed the endometriosis. I had all of it taken out and I’m not cured but I feel better than when I had it. Some days are better than others…. I started on progesterone a few months after & estrogen a year later to starve it out for a while. My dr said the meds don’t activate the endo as much as our natural hormones.
      I wish u more better days💐

      Paula

    • Krystal hill

      I had/have im sure endometriosis and ended up having a hysterectomy and was great for years. Best decision i made..

    • Ruby

      Hope , I have also been diagnosed with endo and your symptoms and story are very similar to mine, so I want to just share what I’ve learned in the last 18 months. Maybe it can help lead you toward better treatment. BTW- I use caps for emphasis, not yelling, okay.🙂

      1st, know that by definition, endo is endometrial-LIKE tissue found OUTSIDE the uterus, so removing the uterus, as your gyn suggested, will NOT cure endo. Removing the ovaries MAY help, because endo is stimulated by the release of hormones from the ovaries. However research has indicaed that endo glands and stroma can produce their own estrogen, so even a full hysterectomy will not guarantee freedom from endo. The ONLY way to come close is to remove ALL endo lesions completely, typically through careful excision, which most gyns are not trained to do. I wish a hysterectomy was the answer. I’m sorry.

      Also, hormone therapy may only suspend endo proliferation temporarily, sometimes not at all. Regardless, if you find relief, there are many side effects with hormones or GRNH inhibitors, so please research a lot before committing to a long term treatment, for your own well being.

      So, in the last few years, I had most of those symptoms you mentioned, plus a few others, like low back pain, abdominal lumps and pain, sciatica, migraines, etc They have actually been bothering me for much longer (decades – yup, I’m feeling old *sigh*), steadily increasing in intensity. Last year when I finally insisted on another laparoscopy, things went from bad to worse. Briefly, I learned that I likely have endo’s evil sister, adenomyosis, as well as Pelvic floor myalgia (PFM or sometimes PFD for Dysfunction) and Myofascial pain syndrome (MPS) – THIS equates to the muscle spasms you mentioned), Interstitial cystitis (IC) – this is a very painful chronic bladder disorder that is often comorbid with endo. Blood in the urine is common with it, as is a feeling very like a UTI that never goes away and is never helped by antibiotics.

      Also, I was diagnosed with IBS because of similar bowel changes as you have mentioned. Although, bowel disruption is common when endo has found its way onto the bowels, basically imitating the symptoms of IBS, only with actual pathology. Unfortunately that pathology can only be seen through surgery, unless you are unfortunate enough to develop a bowel adhesion that causes a restriction. Otherwise it is invisible to TV ultrasounds, CT scans, and usually even MRI, unless the lesions are really big – heaven forbid. Still, it is a rather silent torturer, because clinicians can’t easily test for endo on the bowel (or elsewhere).

      Since my last lap in April ’15, I have undergone 14 months of Physical therapy with both a pelvic floor physical therapist and another working on my low back and sacroiliac area, 6 weeks of bladder instillations, 2 other surgeries, nerve block injections, countless specialists and more meds than I want to even remember (because most had AWFUL side effects). And I’m still fighting.

      The PFPT helps to loosen adhesions, work out muscle spasms (or trigger points) and stretching those muscles in an attempt to combat the PFM and MPS. This is also useful for IC, because after the body has undergone years of trauma (pain), the CNS often basically misfires, and the muscles near the source of trauma overreact by clenching constantly. It’s like having one or more endless charlie horses in your abdomen and pelvis. SO painful.

      Of course I’m no doctor so I can’t give you any medical advice, but armed with knowledge hopefully you can go to your doctor and discuss these symptoms and diagnoses and see if they fit with you. A Urologist can help diagnose and treat IC. A certified women’s health physical therapist can help with the spasms and PFD. A well trained endometriosis specialist can help excise your endo (which is best before the PFPT). A pain management specialist can help determine if your CNS has centralized the trauma and treat you accordingly.

      And finally, I have found that going to a mental health professional has also helped me immensely. The pain and trauma we suffer is no small thing. From doctors accusing us of it being “in our heads” or being pill-seekers to family pressuring us to have a baby or a hysterectomy (gah!) to the way our own minds and hearts punish ourselves for not living up to our own self-appointed expectations with guilt, anger, mental defeat, you name it…if you live with chronic, invisible pain like this, a psychologist or psychiatrist can be a real ally. And we, women with endo and its wicked comorbids, need all the allies we can get.

      Speaking of…there are some fantastic support groups on FB too for endo, adeno, IC and more. Wonderful women going through much the same as you and I are, who are willing to listen and encourage you when you’re feeling down. You are not alone, sister. Best of luck.

    • Idaly

      I realize this is a few months late, have you read up on PCOS? You have many of the symptoms. Anyway, just a thought. I have endometriosis, diagnosed 9 years ago after a laparoscopy and slowly making its way back.

    • Lacey

      I feel for you. I truly get exactly what you’re going through to the t! I just got over one of the WORST periods I’ve ever had. I nearly had to check myself into the ER because the bleeding and pain was so bad. I’m sorry that the removal of the endometrial adhesions from your c-sections didn’t rectify the problem. I too have these darned adhesions and for 8 yrs I’ve dealt with it. It’s ridiculous how flipping awful this crap makes you feel.

  4. Very good analysis. I’ve used the “toothache” pain to describe the inner nerve pain. Sometimes-in addition-my body will shiver and chill from pain. I know I’ve become so immune to the effects of the pain. I’m working on being more aware of what my body needs to mitigate the episodes.

    Your article gave me much relief in knowing others understand. The mental impact, woah–it’s not going away is difficult to process; it can be very frustrating to go to sleep in pain & wake up in pain. Management is key- I got off heavy pain killers, only because of side effects- I’m now trying other methods.

    An exhausting journey, but solace in knowing I’m not alone.

  5. Wanda

    I found this help in trying to help my daughter understand that first of all she isn’t crazy. It is also helpful in explaining it to her boyfriend and teachers. It is very emotional living with this disease and feeling like you always have to explain yourself and apologize for how you are feeling. I have dealt with this all of my life and even before anyone had a name for it. Some doctors really don’t get just how much this disease controls your whole life. Thank you for this information.

  6. A English

    Thank you so much for describing your pain as a “toothache pain” . I have been struggling with this for awhile now and it had finally gotten to a point where I couldn’t handle it anymore and I have a CT scan scheduled later today.

    I thought I was going crazy when describing my pain as a toothache like pain and you are the only other person I have seen describe it as such, it’s a nice feeling to know that I’m not loosing my mind and this genuinely could be what’s wrong with me. So thank you, so much.

  7. Karina Diaz

    I don’t have insurance or doctor and with that said I have to rely on natural remedies or over the counter medications. Well my period felt today and yesterday as if i wanted to go so bad to the restroom and I coudlnt’ my insides feel like burning fire and knifes stabbing my abdomen they pain is so bad I fall to the ground and hardly could walk. My insides bellow my pelvis felt like fire. I have a feeling like going to the restroom but I cant’ it just bothers me, I hate for any women to ever go thru this.

  8. Roweena

    I am currently scheduled to go to my gyno and see if I can find a resolution to all my pain because I did my own research and know from my symptoms that I am provably facing stage 4 endometriosis with bladder and bowel involvement due to the bleeding that I experience with each period. I bleed so badly from my rectum and bladder that I not only use tampons but also wear a maxi pad to contain it all. I have been dealing with the unbearable pain during my periods since I was a child. I have another complication to contend with though because I have hashimotos thyroid gland and I am going through trying to get that under control as well. I’m 45 and completely done having children because I learned after losing several pregnancies and barely carrying my daughter to term that my hashimotos disease causes infertility issues that are pretty much irreversible. My pain is so bad for the first two days of my period that it is difficult to function at all but I am a widow and must take care of my daughter on my own so I have no choice but to function without change when it comes to work. I so hope that if I am forceful enough in controlling my own treatment that I will be able to be pain free once I get through all the surgical repairs.

  9. Quyncee

    This has helped me to better understand endometriosis. I have always had terrible periods and hormonal imbalances since a very young age. These last 2 months have been the worst I have ever experienced and not just while on my period. I eventually had to go to the ER where they couldn’t find anything wrong with me but said there was blood in my urine. I go to the specialist this next week and am really hoping for a diagnosis and hopefully some treatment that will lessen my syptoms. I also get severe leg pains but I work on my feet all day and ride a bicycle to and from work. I am only 24 and although I have not had children this is without a doubt the worst pain I have ever experienced in my life. I was fortunate that my first visit with a new doctor her first assumption was that it may be endometriosis so I don’t have to waste anymore time wondering.

  10. Mikki Hames

    I was diagnosed with endometriosis 5 years ago and given the mirena coil to help with the prolonged heavy bleeding. This worked wonderfully until recently. Ive been suffering chronic groun pain, back pain, urine retention, blood in urine, pain on passing both urine and pooh. A visit to my GP has resulted in tests being carried out to check for cancer of the bladder and kidneys which thankfully its not. However, they have found a cyst in my pelvic area which is 66cm x 77cm…. let me say the pain i am living with while undergoing tests is unreal and the dragging pain, ache, shooting pain which is crippling at times is awful. Im hoping when i meet my gyne he can offer me a treatment that will bring relife. Can i ask is anyone else going through symptoms like me, any help and advice would be really appreciated.

  11. Rebecca

    Hi All,

    I’ve not been diagnosed, waiting on a lap that my gynocoligist is REALLY hesitant to do. Back pain, lower abdominal pain, headaches, GI symptoms flare up during mentruation. Also suffering from colitis that was diagnosed about 5 years ago. It’s very difficult to be brushed aside because you look “fine”, but are suffering so badly most days of the week. I’m lucky to have a wonderful husband and toddler to keep me going, but as you all know, it gets really frustrating. My heating pad is my best friend most days. May we all find the answers, help, and understanding that we need from the medical community. This website and comments from others who are going through similar struggles is so comforting, thank you ✌

    • Tara

      Hi ladies!
      I have been in and out of hospitals and dr offices for 7 mo trying to deal with my endo pain.
      I FINALLY got in to see s specialist and he is amazing!
      He put me on LUPRON and I haven’t had any pain in a week!!! And this is coming from pain almost every day for 2 mo straight and on and off before that!!! 2 MONTHS OF PAIN EVERYDAY
      I was placed on bed rest, I was bleeding BAD and hating my life!
      We all know the mind, body, and soul ripping pain!

      ITS GONE!
      It
      Is
      Gone!!

      I hope it stays this way!

      Down side, I have muscle cramps in my back on the right side ( same side as my major endo pain)
      But it’s not constant and the dr said it wil level out when my body adjusts to the meds!!

      Seriously girls, I have been trying all kinds of homeopathic remedies, and anything the Drs suggested,
      NOTHING
      Has helped like this!
      I am very happy, pain free (minus the muscle ache) and I STRONGLY urge you ladies to ask your gyno about LUPRON!!!!
      -Tara

  12. The systems that have been diagnosed is what I’m suffering with but I don’t understand if I have it cause I had operation about 4 years ago I had something burnt to stop the bleeding and only just started the bleeding and I’m so much pain and I have drank a lot of wine lately

  13. Joanne Walker

    Hi my name is Joanne and Im 25. its been almost a month since Im having this crazy pain its like something is ripping something in my pelvic area the pain start when im walking, sitting and get up or just active and then stays for days and it goes away but its start all over again. i have a 2 year old daughter and since shes born I have been in the DEPO so I have no periods but since this been happening I been having like periods pain, lower back pain and the doctors have not find anything I dont have any cyst or infections or anything like that so I dont know but this pain is driving me crazy is so annoying I dont know what to do.

  14. Tammy

    I have always had bad cycles. I started my menstrual cycle at the age of 9 years old. I have read many articles saying your peroids should only last 3-7 days, ha.ha. I could only wish they were that short. Finally after years of pain I had an ablation. It did lessen my peroids to 7-10 days sometimes 12. But my right ovary ( every month) feels like someone is squeezing it until I think it will bust. Pain is so bad I can’t get out of bed. I to have pain ( bruised) feeling in my bottom. Oh yeah and the pain of having a bowl movement while on my peroids is unbearable. Sometimes I think I will passout on the pot. Lately my kneees feel as if all my energy has been sucked out through them, I rub muscle rub on them they throb. No one should have to endure this pain. Most men think we are being dramatic. I am only 38yrs old and would hate to have a hysterectomy but at this point its my only option. The one thing that has always eased the pain is hot bath. To bad I can’t take a tub to work. Now both my daughters have been diagnosed with PCOS and Endometriosis.

  15. Jennifer

    I had a partial hysterectomy 3 years ago removing a lot of endometriosis along with uterine fibroids. For the past year i have started having more symptoms that point to my endometriosis being back, especially the past six months. Pain is so severe it spreads from my groin to my lower back and hips. I walk with a limp at times, i can’t sleep, it hurts to sit for long periods of time.
    My surgeon moved so i have not been back to the doctor, mainly because my deductible is so high.. i eat NSAID’s and that doesn’t help much. I am going to try Evening Primrose Oil to see if that helps.
    I am single and 38 years old! I hate going through this! I feel like an old woman, I can’t get out and enjoy life because of the constant pain. I have so many things i want to do, so many hobbies and a 5 year old son that loves to keep me on my toes. By the end of the day i am in tears! I feel like i can’t even get a date.. and i am a very pretty woman! But how do you explain this to people?
    I do have to say the hysterectomy was the best thing i have ever done though! I felt like a million dollars afterwards… at least until now.

  16. Ntombo

    Dear Doctor

    I am a lady of 30year. I sometimes just randomly get electrical strike on my abdominal or womb like lightning. It comes just strikes from vigina to abdominal part of my stomach. I dont knw where i shud visit gneacologist or normal doctor.

  17. Pingback: Emotional Pain | endo[me]triosis

  18. I’ve always had irregular periods and with those come painful cramps in my back, lower abdominal and a more embarrassing part, the anus. Recently though, I’ve been feeling that somethings just not right.

    I can’t seem to find the strength at the gym I used to have, I’m tired, moody, nauseated, my stomach feels like I’ve been poisoned but I can’t throw up no matter how sick I feel. I fainted one morning or almost had a hard fall. Thank God my boyfriend arrived at the right time and caught me before I hit the floor. I was shaking and heating up.

    I had a Pap smear and uterus test which came back clear. The doctor suggested that I get an ultra sound and blood work as I have symptoms of fibroids and/or cysts. After checking online, I have more the symptoms of endometriosis and still waiting to get an appointment with my doctor. I called to set kne up explaining my pain and symptom but they just won’t take me seriously as an urgent care patient. They told me to wait but I don’t think I can anymore.

    I feel unmotivated to do anything and I don’t want to socialise which are two things opposites to my normal self.

    As I write this now, I keep getting waves of sharp pain in my abdominal area all the way down and over to my anus and lower back. Earlier this morning, the pain was so bad and going down my leg through my hip and into my thigh muscle.

    I’m usually not bad at handling pain but all of this with fainting, nausea, migraines and just fatigue are getting the best of me. I still try to get out and try to distract myself but the pain hits me in the middle of walking or anything and I have to pause and take a lot of deep breaths.

    I feel the pain of every woman going through this and I hope you feel better. I am yet to figure out exactly what is wrong with me.

  19. Catherine Pyakawa Tendee Anoruo

    Everything here was so helpful,because my case is unexplainable.Worse than labour pain. I have faith, I will come out of it soon, my lap is coming up next month. This pain has made me feel like I have no life with my husband. Everything is possible with God.

  20. Catherine Pyakawa TendeeA Anoruo

    We are all in this together. Let’s keep fighting we will one day get out of this.

  21. Gill

    My diagnosed endometriosis is causing me great problems at the moment despite having had a hysterectomy and my right ovary removed. The problem now is from my left ovary. I have been in pain now for twelve days with only a couple of pain free hours x my high dose painkillers don’t work. I am having an injection today to shut down my ovary.

  22. Vanessa

    Such a great community of women helping each other out, loving this!

    I’ve put off going to a gynecologist because I’m afraid they’ll misunderstand me and misdiagnose me. But I suspect I may have had endo this whole time. So here’s my deal:

    I’ve had severe cramps ever since I started at 12. I’m thin (but not extremely thin) and been diagnosed as anemic. My flow is always heavy with clots. And when I was prescribed iron pills for anemia, I noticed it made me bleed more during my period. Anyways I notice I bleed a lot when I get those sharp stabbing pains. Generally, my cramps start about a week before my period starts, it’s a dull heavy ache with sharp pains that leave me breathless for a few minutes. It comes and goes. Ibuprofen stopped working a long time ago. Midol is starting to not want to take effect anymore as well. I get extremely bloated and some constipation. But the pain is more localized on the left side of where I guess the ovaries would be located. And then the pain goes towards the area where the uterine and lower stomach are… So like two or three inches below belly button. As I’m getting older the pain keeps getting worse. I have to lay down and literally feel disabled when on my period or before when I have those cramps. Also my breath get sore!!! I’m 20 now, never been sexually active so I know it has to be either endo or ovarian cysts.

    I forgot to mention that when I get those sharp pains it’s so hard for me to stand up straight, I’m like literally half bending. And if I move too much it hurts a lot.

    The interesting thing tho is at this month my period was one week late. ITS NEVER BEEN LATE..EVER. It’s always usually early by a week or a couple of days (aka irregular) I still had the severe cramp pain for a week before, bleeding is slightly different now.

  23. V

    Ok this isn’t about endo but it has to do with our lady areas. I was wearing a panty liner because I anticipated my period to begin any day now . And so I was sitting at work for I guess a really long time and when I got up something hurt extremely bad. I think it was the labia?? It’s gotten a little bit better but anything that touched one of the “lips” caused so much pain, like burning . Or even when I sit. Ironically I also started my period so I switched to a bigger pad and that rubs against it and causes discomfort. If I just be careful and cautious, will this soreness, irritation/burning go away on its own?

    I read that putting lots of pressure down there can cause problems with the vulva… Like riding a bike, horseback riding, and sitting!! So I guess that’s the culprit.

  24. N

    My period cramps start before period and last during period, this month my period was late by one week… Making it a total of 37 days since the last one.

  25. Tara

    This sounds exactly like ENDO!! You should go get checked out by your gyno!!! I’m sorry you hurt.😦 I know the struggle, but once I got on Lupron it helped change my life

    • Vanessa

      Also, r u supposed to feel lumps on your lower stomach, like just beginning he top of the uterus? I noticed that when I’m in pain I feel these lumps but go say when I lay down . You can especially feel them if I’m leaning forward

  26. Amanda Mthethwa

    I found out today that I have endometriosis, and what drives me crazy is my family doesn’t understand a thing. They telling me to pray and I will be ok. I hsve been experiencing the pains for more then 5years now. And now the pains are getting worse, at times i can’t walk due to pains in my left leg. I have been dignosed with a disease that no one understands and it hurts me. Am emotionally tired. Last year when I had a miscarriage at 7 months no one knew what was wrong… I have this pains they are horrible and I experience them 24/7.

  27. Rebecca Gordon

    I am typing this in tears. I’ve had endo for years, im down to one ovary, but I am just now getting the radiating pain down my leg. I cant walk right now but am menstruating right now when all is at its worst. I had the leg pain a couple weeks ago and didnt relate it to the endi because its new for me. My symptoms have always affected my lower abdomen and back, and I just have to get through 2 or 3 days of excruciating pain for worse than when i delivered my 2 children all natural. Ive always had a very high tolerance for pain, hate it but can take it. I am beginning to not be able to take it. I turned 40 in April and though i dont want to admit defeat, I can feel myself breaking. At this point i feel like i need the help of strong pain killers. Is there doctors that will prescribe something in emergency if diagnosis can be provided by me? Its Sunday and i need help now!!

    • Roxy Clark

      Hi Rebecca,

      I’m sorry to hear about your pain. Trust me I know exactly how you feel I was diagnosed with Endometriosis in 2013 ( Laporoscopy Surgery) after suffering many years. I did find relief by eating gluten free & after taking the pill for a year with no sucess I’m now on IUD Mirena which has been Amazing! No periods at first I do have pain every once in awhile but never how I was before. I couldn’t get out of bed and suffered headaches with extreme fatigue. Although I am tired not as I was before. I wish you well! Get as many second opinions as possible don’t give up!

    • Jae

      I have been where you are. I am typing in tears as well, and am ready to throw up everywhere. I used to go to urgent care to get something stronger when I had episodes where I felt as though I was being torn apart. Now, many doctors are hesitant to prescribe anything! And it sucks because we suffer in pain all day and all night. I have about no quality of life anymore and fear I may have to quit my job due to the endometriosis and adenomyosis. I just continue to pray for relief and continually do research on my own. I wish you the best of luck love.

  28. Crystal

    Omg. This is exactly how Ive been feeling for months and unable to put into words!!! Very helpful. Thank you

  29. vissh

    I have had endomitriosis for 14 years, I have had it since I was 8 years old. It is more than a bad period. It has gotten to the point where I can’t eat, sleep, walk, talk, and even my hair becomes impaired. I bled so badly that I couldn’t go anywhere, I had to change my pad as soon as I put another one on. I had it for years and no doctor looked into it at all! Till I was 18 years old. I am on the depo shot, it did help for a while BUT as of now it causes more issues. I randomly bleed and the pains have come back just as bad. Still to this day my doctors haven’t done anything no matter how much I want something done. Thankfully I have a great partner who understands and supports me but STILL, it does affect me and my life every day. Hopefully soon something is done as I want children. To everyone else that suffers from this keep your head up, and keep up the good fight!!!

    • V

      I’ve already described my typical endo suspected symptoms on here. But I just now started feeling lpain where the ovaries should be located and it goes into my groin and upper thighs like a radiating pain and I feel extremely tired. It’s been like that for about a week and a half… First started off on the right now it’s both sides. Never had this before!! I’ve put of going to a gyno, I’m 20 by the way

    • V

      I’ve already described my symptoms as the usual endometriosis symptoms. But I’m experiencing something new. For a week and a half already I e had pain where the ovaries r located and it radiates in my groins and upper thighs… First it was on the right side then before I knew it.. On the left side. So yes both sides. And I feel extremely tired. I’m 20 by the way. I’ve put off going to a gyno to get myself checked out for endo… I just don’t want my symptoms to go ignored by yet another doctor

  30. Kelly

    So helpful.

    I’m 42, diagnosed surprising quickly with Endo after I demanded help (3 sets of anti bi’s to treat a UTI that never was) CT45 blood test was high and sent the cancer alarms ringing, it wasn’t but it got me seen and a Lappy. I had a twisted ovary and a left ovary with unwelcome Endo whichever as promptly removed. I was told a year free (I was shocked – just a year?) but then with 12 weeks later it’s back, I can feel it, the pain, the fatigue. I’ve asked for a gyne referral and luckily got one for the end of the month but how to move forward I’m not sure. I eat well and haven’t found any food triggers but it loves too much alcohol if I go on holiday or have a few celebrations in a short period of time which I’m learning to avoid. Learning to live with Endo is the best hope as otherwise you live with it which is no fun

  31. Amy

    I’ve suffered for 17 years on and off contraception , scan after scan till I told them I wanted to see a gyni ?? And told him if he didn’t remove everything I would , and I’d have to come in so he could sort out what I’d done !!!! I’m now waiting for a full hysterectomy cervix , uterus , womb tubes and ovaries , keep pushing guys because it’s no fun

  32. Tshepi

    8 Years of Endometriosis and part of family still doesn’t get it… heck I don’t even get it. I have realised a lot of people don’t know about it or understand the disease. What pains me is lack of emotional support from surrounding loved ones when the pain returns.

    I am South African and was diagnosed with endometriosis in 2008 after my 1st lapscope.

    I had my 2nd lapscope in 2012 and was scheduled for a 3rd one in 2014 which I chose not to have seeing that the more operations you go for, the more you decrease your chances of future fertility.

    I’m 27, not in a relationship and I live at home for “parental & cultural” reasons I have chosen to understand and respect- which will change soon as they don’t accommodate my condition.

    So I had a tiff with one of my parents for not going to work for the 3rd time this month because of the effects of the pain on my body and most especially my productivity at work.

    What was not understood was why I didn’t soldier up and just go to work since everyone in the house has health issues but they keep living- the comparison of this disease to flu and stomach bugs is unfathomable, most especially since its almost been a decade struggling with endometriosis.

    So I searched for “how to get loved ones to understand someone whose living with endometriosis ” on Google and came across this website which is incredibly informative and hopefully the information I retrieved from this page will assist my family, friends and probably my boss to understand the up & down experience of the pain and it’s impact on my life…

  33. Melanie

    I got diagnosed with Endometriosis 18 years ago & ovarian cysts. For Afew years now I’ve suffered really bad shooting pains up my bum 🙈 Felt like I’m going to pass out, go really hot with a cold sweat (looks like I’ve just stepped out of the shower. Could this be symptoms that I have this in this area? Worried now.

  34. Ashley garcia

    I was just diagnosed in May through Laporoscopy. I am 30 now. But have had problems since I started my period at 13. I would have severe period pain. Throbbing pain in between my thighs and radiating down my legs and through to my back. I thought it was “normal period pain” but as I got older it got worse.
    When I became sexually active (2004)my obgyn put me on a low estrogen Birth Control which I took for 2 years when I moved and stopped getting the perscription filled.
    A few months later I got pregnant with my first (late 2006) breastfed for a year and immediately went back on birth control. And stayed on the same one until last year (Dec 2015) when I started aging bad anxiety from it.
    So from 2006-2015 birth control really helped. But once i stopped taking it.. well.. That’s when all hell broke loose! And every month since then has been worse. My doctor finally started testing me and sending me for blood work and all that good stuff. They saw a large cyst on an ultrasound and then scheduled a laparoscopy.
    The laparoscopy showed a large cyst on my left ovary and large amounts of endo. Yay.. what I expected all along. At least i knew it wasnt “all in my head”, though i wish it was.. I have a surgery scheduled for July 27th, 2016 for a laparotomy which is the larger incision on my abdomen.
    I sit here now in the most pain I have ever been in in my life.. even worse than natural childbirth! I feel so helpless. It’s like I can feel everything moving through my intestines. And the pain when I have a full bladder is unbearable! I can only describe it like.. contractions, diarrhea cramps, constipation and the worst period cramps multiplied by 10! Like I sit on the toilet hoping that something will happen and bring me just a little bit of relief but nothing!
    On top of all of this.. my doctor is treating me like i am exaggerating with the pain, as if im in it for the pain meds. He only perscribed me 14 low dose vicodin in the last month. And when I showed up at his office crying, he made a comment that made me feel guilty for being in pain. Like I was at fault. I can’t control it. I didn’t cause it and I have to suffer! it’s frustrating not being able to talk to anyone that can relate. I am sorry for rambling on. But I guess I just needed to vent.

    • Elizabeth

      This is how I feel. It hurts so bad! I do not have kids I couldn’t have them. I have a severe case of it. I’m having a hysterectomy in September. But I know what you are going through. I feel like everything is being ripped out of my body!

    • Ashley garcia

      HERES AN UPDATE
      After my surgery they found some chocolate cysts. And popped all the cysts on my ovaries (pcos). My doctor found that my uterus is shaped kind of funny so he thinks it’s adenomyosis. Which is pretty much endometriosis inside the uterus walls. And he took out everything he could find but here I am a month later and the pain is just as bad. So yay me.. I got diagnosed with 3 conditions. On top of having ovarian cyst. Next step is a hysterectomy. HAS ANYONE TRIED ENDOVAN?

  35. Elizabeth

    I am 30 years old and I’ve had extremely painful periods for years. I was recently diagnosed with endometriosis. I’m having a hysterectomy in September. I was wondering if anyone has ever had side pain from it? My side will hurt so bad at the waist on my left side. I can’t handle the pain anymore! It’s slowly killing me.

    • Ashley garcia

      Hi Elizabeth

      Finally , somepne i can relate too! I do have pain on my left side. But it’s more like the inside of my left hip bone. But I have a large cyst there. It gets so painful that it’s hard to walk. Like a sharp stabbing and achy type of pain. But I have read that endo can grow anywhere in the abdomen. It can grow on the diaphragm and lungs in severe cases. I home this is not the case with you. My surgery is in 10 days ( yes I’m counting) I’m kind of freaking out because my doctor is older.. like about to retire in a few years. I wish you luck with your surgery!

  36. Jenna C

    Thank you for the insight. I went to the hospital this weekend due to my pain being so bad. They found a large 6 cm cyst on my right ovary after a CT scan. I was surprised they didn’t do the surgery that evening but has now sent me back to my gynaecologist and family physician for more tests. It’s now Monday and I’m still sick at home with severe pain but not as bad as Saturday. This affects my pooping as well and I feel very constipated during these episodes… My entire lower abdominal feels very swollen and when I move in my bed I get sharp pains (or when sitting up). This sucks!! For many years I have felt that my physicians have not wanted to do much about it and believe pain is subjective. I’m emotional basket case and I really wish I could get the support I need. This completely ruins my quality-of-life.

    • Ashley garcia

      I feel the same way. It comes and goes in “flare ups” i get them 4 times a month on average an the last days! It’s horrible. I hope you find relief. I can recommend heating pads and ice packs!

  37. You described my pain perfectly. So bad lmost feel suicidle at times. I had a stroke two years ago from the treatment for endometriosis. Gained weight from being in bed and lack of mobility during recovery. Now dr says I have to loose weight cause I’m high risk for hysterectomy. Completely ruined my life and I’m on disability now. Not living just existing. I hate my life and need a dr who can take this pain away.

    • Ashley garcia

      Hi lisa,
      I’m sorry you feel this way. It’s a horrible disease to have. But just know how strong you are! And how most people wouldn’t survive with this disease and you are! You just need to find an outlet. I started to workout. As hard as it is to get up and get there through the pain, once I start the pain goes away! Relief for a few hours at least! It’s like the endorphins or something.. idk I’m no a doctor. But I decided I will not let this disease knock me down. And as much as it hurts and through the depression I will fight it! I hope you can do the same. I hope you have better days and know that you are stronger than this. I’m sending my love your way! And wish you nothing but the best! 💕

  38. Tori Guy

    After my last cesarean 4 1/2 years ago, I had a tubal ligation. Ever since then my cycle comes every 22 to 24 days (before came 28-30 days), my periods last 7 days (before were 4 days), heavy bleeding with a lot of clots for the first 4 days (before heavier flow was 1 or 2 days, hardly any clots), severe cramping (cramps before were mild and only for a day). Also in the last 10 months I started getting this pulled muscle feeling but very painful on my left lower side during my periods. Each month it got worse. So a few months ago I went to the ER because it lasted a week after my period and was extremely painful. They did a CT scan and basically found nothing but some constipation. I have suffered from constipation pretty much my whole life and knew this was something different. But really I didn’t expect an ER doc to help, just want to make sure it wasn’t some organ that ruptured. I couldn’t lay on my left side and sometimes it was hard to even move because the pain was so debilitating. Well its been a few months since then and sure enough every month during my period, that tearing pain returns. A few weeks ago I started taking a probiotic with 30 billion live cultures. I am currently on my menstrual and didnt have any cramps but I do still have the muscle pulled feeling in my lower left stomach but not as bad My flow was still a bit heavy first 2 days but no clots and its day four and it has lightened up. I am going to the doctor in a few days and will be addressing my concerns but unfortunately I am not hopeful anything will be done. I also have gained 19 pounds in 3 months and I am tired all the time despite getting 8 hours of sleep. Probiotic has helped with the tiredness, I do feel I have more energy since taking it. On one hand its good to know a lot of woman have the same problem but on the other hand seems like doctors just dismiss it.

  39. I have a wierd crawling sensation in the right leg and during period the energy warbles from the back and front just above the hip down the leg. I have always had painful menstruation. Each month I take painkillers I’m 4s, 2 nurofen and 2 paracetamols. To combat pain. At night sometimes I take night nurse. The period pain is excruciating. However I find not even my mum understands or cares, and women don’t care,. In my work I work part time and pray that the period falls on a week end or day I am.not working. I am.always cold. Even in summer I use a Hotwater bottle I’m bed. England is not a warm place anyway but I need heat. I always feel like I am a lizard. I need heat to function. I find a hot bath helps, Hotwater bottles. A cat helps. My cat does not mind my moods
    Were as my friends seem to notice my face and things get awkward. As I have got older it is the pain in my right leg which bothers me most
    it is hard to walk.

  40. Gillnelson

    I have had enough of been in so much pain like a depress all the time the doc think by taken painkillers is the answer but it’s not give us the proper treatment to help us need to back been happy again

  41. Katie Turner

    I’m 25 I was finally diagnosed last year with stage 4 endo I have not had kids and now may be unable… My right ovary is twisted and scarred to my uterus with my Fillopian tube wrapped around it. I have had terrible periods to the point of almost passing out as long as I can remember with several visits to the ER and even more Drs. I was misdiagnosed with PCOS as well as “Painfull Periods” and told it was all in my head and I needed to see a psychiatrist by my general dr. I’m in constant pain, exhausted all the time I miss work, miss out on living, I’ve tried every birth control, the lupon depot shots that have miserable side effects, I had a DNC and he burned what he could off but I’m to young for him to take what he needed. I now have hip pain and radiating pain through my leg and am out of options and I’m pretty sure my dr. Who has been so understanding is even fed up with me… I wish there was more understanding around this disease. It has completely changed me and my path it determines if I have a good day or not, whether I go out or not, whether I make it to work. Im so frustrated.

  42. Heather

    This article is so good and very helpful. I was diagnosed with endo in 2006 and it was second stage on my bowel. It is now 2016 and I still have it. I am praying and seeking the Lord’s face of what treatment he desires for my body. He will never leave me or forsake me. He binds up my wounds and saves those who are crushed in spirit. If it was not for Jesus Christ and believing in him I could not find hope. Jesus died on the cross, shed his precious blood, was buried and rose again on the third day. Now there is an empty tomb with repentance and forgiveness of sins to save us from an awful place called HELL. This is a place with weeping and gnashing of teeth, eternal torment, outer darkness, separated from God forever, no peace or rest day or night. Jesus wants us to believe on his name and be saved. Cry out or call out to him for mercy. Today is the day of Salvation. We are not even guaranteed the next 5 minutes or tomorrow. Be reconciled to God.

  43. Michelle

    I have endometriosis which causes lower back pain and pelvic pain on my left side. This pain will sometimes travel down my leg and causes extreme fatigue during the day. I am considering a hysterectomy and a laporascopy to gain back my quality of life. Currently an on continuos hormone therapy but that’s not helping too much. Any feedback would be much appreciated.

  44. MJ

    I was diagnosed after suffering for 10+ years.I was formally diagnosed in Feb and had major surgery two months later. During surgery u was told that my adhesions and growths literally had my organs webbed together. It could have caused major issues and could have even caused death if left untreated. Sadly, many women get the “shoulder shrug” when they describe the symptoms to their doctors. I hope more gynecologist start taking this more serious. Best if luck to all women dealing with this.

  45. Wendybeckford

    Yes i did i have all this ! Because i have spinal problems and either have ra or fibromagism it gets over looked and no one listens or understands

  46. Marie

    Thanks thats was very helpful and feel like am not the only one. So iften when am in pain I just feel like no one can undesrtand and that you pretending. I can’t drive my kids to school when i have my period. My legs feel heavy. The pain is like a stabbing in my right constant. Feel depressed with constant pain. Try to stop painkiller but did not work. Some months are worst. Feel like am pregnant and having milk.. The body seems disfunctional. All I know they haven’t find anything yet to alleviste the pain. Women emotions may cause more psin. Be aware and do not let emotions take over.
    Thank you

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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