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'm a endometriosis sufferer of five years. Trying to live and work with this disease as best I can.

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

  1. 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.

  2. 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

  3. 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

      THANK YOU FOR EXPLAINNING SO WELL EXACTLY HOW YOU FEEL!!!!!, I THOUGHT IT WAS ME WHO WROTE HOW I FELT IT MAKES ME REALIZED THAT I’M NOT IMAGENING I ALREADY BOOKED FOR A HYSTERECTOMY, I NEVER THOUGHT ENDOMETRIOSIS CAN BE SO EVIL AND NASTY!!!!!, I PRAY TO GOD THAT THEY FIND SOMETHING THAT CAN HELP US ALL :(

      • Hi Lady’s my name is Leticia Williamson and i have endometriosis to i have very bad pelvic pain it feels like a lot of hot needles are trying to shoot out of my stomach i have very bad pain in my right leg its like a stabbing kind of pain and also have pain in my lower back unfortunately like some of you guys have said no doctor seems to understand it and if you ask for any pain medicine they treat you like a criminal fortunately for me my pcp was able to reffer me to a pain specialist , but also told me something very scary about getting a hysterectomy to cure endometriosis well he told me that getting a hysterectomy doesnt always cure endometriosis because if you get it when youre so young youre going to have to be put on hormones wich could bring up the endometriosis again .

  4. 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

  5. Jenny

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

  6. 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.

  7. 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!

  8. 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?

  9. 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

  10. 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

      Sian,
      Yes I think u should do something. If u have endo and ur not taking anything to control it, it could be creating a lot of problems internally. I had a lap. in 2010 & they didn’t find endo but I was in tons of pain. My dr told me I may still have it & they just didn’t find it in that area. After more years of pain & period issues I decided to have a PLH hysterectomy because I have one child and dont want anymore. They found lots of endo in December 2014 & had to remove a bunch of it. Listen to yourself & push for what u feel u need!! At least you will have the peace of mind & maybe some answers and u can go from there….

  11. 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!

  12. 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

  13. 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

  14. 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.

  15. 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.

  16. Beth

    Hiya.

    I went back to the doctors last week after having had a smear, swab and transvaginal ultrasound last year. They all came back normal. However, I’m still in agony every month(last month I only had about four days without pain). She’s now sent off a referral and gave me Solpadol, I can’t work on tthese tablets though. I’ve been having shooting pains from the top of my bum/back travelling to the side of my left knee for weeks now when I kneel/cross my legsor stand for a while. Is this anything to do with endo or am I just suffering with my joints?
    Thanks,
    Beth

    • 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

      Beth,
      I have the same thing & have endo but doctors don’t seem to be able to tell me… Let me know if u find help w it & answers…
      Paula

      • 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

  17. 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

  18. 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

  19. 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.

  20. 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 :-(

  21. 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.

  22. 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!

  23. 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!

    • paige

      Caitlyn,
      I forgot to ask about the physical therapy that you said didn’t work for you..I was told by my general doctor to get it done but being only 18 I was embarrassed that I would be the youngest one there. I was also concerned it was going to be very invasive and awkward and uncomfortable. Is it stretches? breathing exercises? or was it biofeedback? I’ve read up on it and am even thinking after buying two books on pelvic pain I can do the relaxing on my own. However, if it doesn’t work I might call the specialist I’ve been recommended to see what she thinks.

  24. 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

      Matshediso
      Ur post didn’t pop up in my email….
      U need to go to a gyno & don’t take no for an answer if u really want the laparoscopy done. I had one done & they found no signs of endo in 2010. I was still have so much pain even when on the depo provera shot &no periods for years. They did another lap last December right after my period & found a bunch of endo fresh & old. I have since had a hysterectomy & still have pain but not as severe. Good luck to u!!! Sorry ur in so much pain. I know it’s really terrible:(

  25. 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…

  26. 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!!

  27. 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.

  28. 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

    • Paula

      Paige,
      I don’t have IC but my sister does. There is a new medication called elmiron that is out now. I’ve been tested for IC & had a couple cystoscopies but my gyno & urogyno never found it however the medication does help me sometimes. I have some endo that they couldn’t burn off cuz it was on my ureters. My dr was nice enough to give it to me to at least see if it would help. It doesn’t build up in your system so your supposed to take it 3 x daily. I just do it as needed….

      Paula

  29. 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

      Tosha,
      How rude that people tell u it’s in your head. If only they could be in our bodies!! It’s just despicable. U are not crazy. I had dr’s do the same thing to me. I went to a really good psychologist bc I moved & went through a divorce & just needed some support but I also went to deal with the pain. Living with chronic pain & not having anyone that understands can be really really tough. Not having a diagnosis or any tangeable evidence that your not crazy just makes it all that much worse. I’m sorry u have to go through this. U know in your heart when something is wrong sometimes the answers evade us. I hope u find them quickly
      Paula

      • 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

  30. 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

  31. 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?

  32. 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.

  33. Miriam Daniels

    Hi
    I am 23 and I got told I had endometriosis just October last year!
    Since then I’ve had 2 operations to try and remove it! Both being failures!
    Since I was 14 I have always suffered with period pains and heavy bleeding always being told I’ll be ok and to take pain killers!
    This is destroying my life in all aspects! Relationship, friendship and my work life.
    I am constantly down and feeling hormonal even when I am not on a period.
    I’ve had to make some decisions and only being 23 they have been hard I was offered a hysterectomy, early menopause. But as young as 23 I don’t feel I want to go down that road.
    Does anybody have any advice? I feel like I am going insane
    Thanks miriam

  34. 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.

  35. 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☺️

  36. 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

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Endohope

My name is Michelle and I've been living and working with endometriosis for five years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

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