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.

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

  1. Emily

    My name is Emily and I am currently 18 years old. For a while now everytime I get my period I have an ungodly painful pain tht happens in my vagina. It is very hard to describe. It feels as though someone is stabbing me in my vagina and it shoots through me. I have to grip something so right in order to not scream from pain. It usually happens te first couple of days of my period. It has lasted from as long as four hours to 24 hours. The gynecologist told me it was just period pains and put me on birth control to help control it. Does anyone have any idea what this is? To go to the restroom or even get out of bed when these pains occur is impossible.

    • Hi Emily, sounds exactly like what I have been through for the last few years. Get a second opinion. That is what I am doing at the moment; if you think something is not right, ask questions and demand answers.

      • kayley

        Hi Emily

        I have this pain aswell and I have only just recently found out that these shooting pains sometimes in the rectal area up through the back sometimes when you sit on the loo is linked to endometriosos, these can also be caused when going for a number 2 around the first few days of your period. Be persistent with your doctor, I was fobbed off for 7 years until I was diagnosed with endometriosis and I have the exact same pains you describe the first two days of my period.

    • Tyisha

      I have this same issue obviously that’s why I googled it lol. Dr says she doesn’t see anything wrong with my ovaries but the pain when it comes is excruciating. I too have to stop and grip whatever is close to not scream. I can not move when the pain comes. Bad thing is it’s random therefore I don’t know when it’s coming. It happened today at work and I was so embarrassed. How do you all determine when the pain is going to start?

  2. Georgina

    I’ve had endo since around 20 and I’m now 33. I’ve had multiple surgeries and drug treatments over the years, and the only comment I would make to anyone else with the condition is to keep pushing for treatment. I got told so many times nothing was wrong, it wasn’t endo, it was in my head… You know when there is something wrong so don’t give up!

    • Hi. My name is Melissa. was just wondering what all surgeries you have had done? i am 39 now and have four kids. had surgery two years ago for a cyst on my right ovary and had an ablation done as well. my doctor found endo on the backside of my uterus while she was doing the surgery. she removed all she found and i felt amazing for a year! no back pain, it was great! i have not had a period for two years now either. i still have the pain and symptoms of being on a period. so anyways after a year i noticed the back pain slowly coming back, and after a year and three months it was horrible again! went back to doctor and she did not really act like she would do surgery again and put me on birth control. took it for three months and stopped, really did not notice a difference and do not like taking medicine. so i was just wondering if you have had more than one surgery to take out endo?

      • sarah

        I have had 7 surgeries in 7 years for endo. I have had both alblation and exision by laparoscopy. Unfortunately the endo continues to grow and though the surgery definitely helps, I am always in pain again about a year later. I hate getting surgery every year but after trying birth control, diet, exercise, and pain meds, it’s the only thing that makes any difference for me. I haven’t had a period in 8 years (I’m on the IUD), which also hasn’t made any difference in the pain for me

  3. Pingback: Does Back Pain Affect Pregnancy

  4. Rachel

    I am now 25 and was diagnosed with endemetriosis at the age of 23, I had and endoscopy operation to clear away all the necessary from this diagnoses….however 15 months down the line I am now back to where I was before my operation. Amongst the agonising pain and discomfort its mainly frustrating to know that endemetriosis isn’t something that can be permanantly cured! Unless you have a baby I’ve been told :-S

    • Eve

      I was diagnosed with medium severity endometriosis about three years ago at 23 years old. I didn’t have heavy periods or many of the other symptoms, just a terrible burning and aching in my abdomen that came on quite quickly. I had a laparoscopy to remove the tissue, then went on the Zoely pill for three years on the recommendation of my (excellent) gynaecologist. After a few months, it COMPLETELY went away and has never come back. It certainly wasn’t an “uncurable” disease for me.

    • Brittany R

      Hey Rachel! I was told the same thing about having a baby being the only cure and I am living proof that’s not true. After being diagnosed and going through menopause with Lupron shots at age of 22 I had a child at 25 and now at age 29 I’m in the worst pain ever, im having a laparoscopic surgery on April 20th. It sucks but it seems there is no cure.

  5. Ashley

    Not diagnosed yet but now that I’m in “perimenopause” (also not official diagnosed) my periods start and end with undulating pain in my lower right abdomen, not in the hip crease, but just above and to the left of it (as me, not as looking at me). Lately it doesn’t “bookend” my period closely. It starts early and stays late. Have a dr. appt first week of January.

  6. aimee

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

    • nat

      Bless u hun. Dont give up im the same. I feel crazy.n sometimes csnt bare the thort of living out my life this same way. 2 days ago i went to my hosital appointment about my bladder incontinounce to only be at the wrong hospital n also i .wanted a referal to my gyne but my doctors didnt refer me cps hes so thick he doesnt understand endometriosis effect boel bladder ect like it has me in my past. So anyway i walked into A&E even tho i wasnt in pain n i just refused to leave untill some1 refered me to my gyne n i was took into a room by a lady nurse/doctor working with the A&E that day to help any1 that doesnt really need to be in the A&E. It must of been faite becos she knew exsacly what i was going through bcos she had been a suffer too alot of yrs ago.she listened to my tummy n could hear my bowls were very over active thdn she phoned the best gyne doctor in my town that had dealt with her in the past n luckily i have a referal. Onwards n upwards for me n in tge future im never going to my any doctors again

  7. christine

    Hi i have been living wth endo for 3 or 4 years i have tried many different birthcontrol and nothing.i have pain all the time day and night sometimes for weeks at a time.i am living in hell i am very active with 4 kids so having more is not a option.i just want to be able to go to work and not feel dead by the end of the 8 hrs.any sugesstions??
    I have even been taking natural herbs to help
    It was working but after a year it stoped.
    And having surgery i cant take off the time from work to have surgery.i am loosing out on so much in life .

    • Paige

      Birth control does not get rid of endo.. Surgery will. Birth control is used after surgery to stop periods altogether or make them lighter. Birth control itself does nothing to get rid of endo. Endo can stick your organs together and only a skilled surgeon can unstick it and cut out the endo. I know this because I tried birth control and it did nothing until after I had surgery and stopped getting my periods. The recovery is really only one week and all you need is a laparoscopy which is three barely seen incisions. Surgery was the best choice I ever made.

    • Megan

      Surgery works… but only for the moment for some people. I had surgery in Dec 2013 and when I went back into surgery September 2014 (almost exactly 9 months later) it was worse than what it looked like the first time. I am still looking for something long-term to help me. My doctor put me on Lupron after my surgery but I was not on it long enough so it is back again. During the time I was on Lupron, it was not nearly as painful and i had no periods. The concern with Lurpon is that if you have an estrogen sensitivity, it will probably make you really sick before you start feeling better (it did for me). I wish the best for you and hope you can find relief soon!

      • Dollie

        Have you tried changing your eating. I got the endometriosis book about natural health & have cut out wheat/sugars/caffeine & it has helped me by leaps & bounds! I didn’t even know I was getting my period the past 2 months because I had no symptoms!!!! I’ve never not had pains/fatigue/nauseau when period time!!!

  8. sharna

    thank you for sharing, i have not been diagnosed yet and my first gyno app is in february… I’m freaking out a little bit, i found your description very closely describes what I’ve been going through, although i have been diagnosed with IBS and was told to deal with it until i found my current GP and he took me more seriously, I’ve always had persistent period pain but I’ve never considered it chronic before, i take pain killers occasionally but mostly i just deal… its my seemingly random dull aches and stabbing pains that have me concerned i will be diagnosed with endo soon, also i have bowel symptoms and my cramps are worse around bathroom times, does anyone else have this issue? also i was wondering how long it generally takes for a confirmed diagnosis? I’m dying to know if I’m going to be able to become a mother in the future, infertility is my biggest fear at the moment…

    if anyone would like to share their experience with me i would really appreciate it :)

    • sharna

      oh! and i forgot to mention the painful sex (sometimes but not always) i always have had a once in a blue moon type of deep pain during sex but it has become a lot more frequent the past month, and the back pain!! i don’t know if mine is all connected because i have not been diagnosed for sure but I’ve always had lower back pain for the past few years but it is almost all the time now, especially after standing up for a long time

      does anyone else have these problems?

      i can’t decide if i want to brush all of this off as IBS or if i should really be concerned!!

      I’m always thinking I’ve over reacted because the pain disappears but then all of a sudden its back and not always in the same ways

      • Dollie

        Painful sex is a symptom of endometriosis. I would let your dr know. I found cutting wheat & other things have helped with my endometriosis symptoms but also I’ve read a lot about cutting wheat helps with IBS.

    • Nat

      Hi in my opinion being a sufferer myself chronically since the age of 10 now 29 yrs old your bowl may well be stuck to your ovary or even another organ. Iv been neglected time after time being told it’s ibs stress pains ect. To only end up at age 20 having an op n they found p.i.d, endometriosis, abnormal cervical cells that had to be burnt off court in time. Ovary stuck to bowl. Something wrong with bladder and Fallopian tubes stuck to my pelvis. That while removing my breathing wasn’t going so well so they clipped my tubes instead of removing and I led to have ivf. That I found even more sad news that my ovarys were dying pre mature ovary failer. But my story end with an ivf succes of a beautiful daughter :-) but now I’m back to scare 1 and my doctor is so thick he’s not refered me to my gyne he’s just been sending me for bowl camara n bladder scans ect so ill just end up going into the a.n.e n get a fast track referral to the gyne

      • Nat

        Also forgot to mention oval ring cyst they found they juring my ivf I grew a 6cm cyst on 1 ovary n a fibroid somewhere n it’s as if as soon as I became pregnant all was forgotten about.

    • Brittany R

      Hey! Yes I totally understand!! I have horrible pains 24/7 and when it comes to bowel movements it hurts so bad!! The only way to diagnose endometriosis is with laparoscopic surgery where the dr will go in a look and if dr sees endometriosis they will remove what they can. I had my first laparoscopic surgery diagnosing me at 21, went through hormone (Lupron) treatments and was told I couldn’t have kids but don’t let that scare you because I had a beautiful baby boy at age 25 and at age 29 am in the worst pain of my life and am headed into laparoscopic surgery in a couple weeks. Stay positive!!

  9. Paige

    Ibs wouldn’t really cause pain during sex in my opinion. I was diagnosed with Ibs but the pain still continued after that diagnosis. Your gyno may try to dismiss you because most gynos don’t know how to treat endo or even diagnose it. They usually look for “heavy periods and bad cramps” as a sign that you may have it which didn’t apply to me at all, and yet I still have endo. If this has been going on for a while, it wouldn’t hurt to get a laparoscopy to figure out what’s going on. Trust me, I’m mad I waited. I was bossed around by doctors and turned away for a few years before I couldn’t take it anymore. Infertility may be affected but find a good doctor who can take out the endo and keep it from coming back and you should be okay. My doctor actually shot blue dye through my Fallopian tubes or whatever and said that that was a good sign.. So don’t get upset about that until you truly know you can’t have kids.

    • nat

      Endomtriosis is so complicated. I have it. Iv also had adult colic.witch is pain full. I knw alot of people suffering with bowl bladder ect problems that have all turned out to endometriosis causing ther pain. And in most cases by the time they realise whats wrong, infertility is ther next problem. Dont give up. Speak out, shout if u have too.i wish everyone a pain free life.

  10. Jo

    I have had the lap done almost 2 years ago and have been pain free until the last month, the constant Pelvic/Lower Ab pain is back! I am on meds to treat a possible infection, but still in constant pain. I have been referred back to the Gyno doc and am awaiting my appt. I just want to cry all day every day!

    • Jada

      I feel you Jo. I started to cry the other night in bed because it felt like I had a hot poker jabbing me in my right ovary and back. I am SO over it and I just had surgery on December 19. I thought I would have some relief. It has been so long since i have had more than a few days pain free in the last year. I don’t know how I would react to being pain free. I guess cry tears of joy and pray that it lasts…..

  11. CB

    I have dealt with endometriosis and fibroids since I was about 20 and I’m now 33. I had an ovary removed at 22 and after the surgery i saw multiple doctors because I had terrible pain afterwards. They all acted as if I was crazy, I did my own research and diagnosed myself as having endometriosis. 2 years later I had to have a fibroid removed from my cervix, I was told I would never have a child through natural birth. I decided to have a child and got pregnant after only 1 month of trying, my daughter was delivered via c-section. After my c-section a lump started to form in my stomach, the lump was slowly getting bigger and was really painful during my period. Finally after all this time I was diagnosed as having endometriosis, but the bad news was during my c-section some of the scar tissue moved into my stomach and settled in the muscle area so another surgery to have the tissue removed. 3 years later and the pain is as worse as ever but I now have so much scar tissue that another surgery won’t help me. Constant pain has been the story of my life and now I just pray that my daughter will never have to deal with this.

    • Laura

      I have a lump near my C-section scar, too! I have endo and had surgery twice many years ago. Now 34, I’ve had this lump growing and the doctors are “watching” it. I am going to see a different doctor to see what we can do. The paid used to happen monthly but now its becoming continuous… Its hard to deal with…

    • Nat

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

  12. Jada

    Hello All,

    I am a new poster to this community and am so glad I found it! I’m 34 and just had my second surgery for fibroids. I had an open myomactomy over two years and the doctor couldn’t remove all of the fibroids. However, I began to have very painful periods again in the beginning of 2014. They would be so bad that I would take days of from work and lay in the fetal position. I found another doctor who had high ratings but she was just a regular in and I don’t believe she had much experience with fibroids. So after having multiple ultrasounds she still felt like it was just “regular” period pains and put me on birth control. My body does NOT do well on bc. I truly believe the hormones or whatever is in it makes my fibroids and periods worse. Anyway, I felt like she was not taking my concerns seriously so I found a fibroid specialist at GW. After the first visit, he confirmed not only go I have multiple fibroids, but also possibly endometriosis. No doctor ever mentioned that before. Long story short, I had a laparoscopic myomactomy in December. He said my case was one if the worst he ever saw. In fact he used the words “atomic bomb”. Not only did he gave to remove numbers of fibroids, but my bladder was twisted and connected to other organs and was above my belly button! He also had to remove endometriosis from my right ovary. I kept telling my old doctor how much pain I had on the right side too. Anyway, after surgery he put me in bc, which of course screwed me over but I stopped taking it yesterday. Bad news is after I started taking bc I had all the symptoms of a period but no period. My right side is killing me again and the hip pain hurts like hell. I pray after all the bc is out if my system, things will be better.

  13. TBanks

    My mother was diagnosed with endo in her early 30’s. She had a total hysterectomy at 35. I’ve always had painful, heavy periods since I first started having them. The pain has just gotten worse and evolved as I got older. I’m 31 now.

    I’ve taken birth control on and off for years to help ease the pain. Ibuprofen is my OTC pain med of choice since it deals with the inflammation along with the pain. I can’t find a doctor that will diagnose me with endo no matter what I do.

    A year ago I developed several DVTs (blood clots) in my right leg and PEs (Pulmonary Embolism) in my lungs. I was very close to death by the time I went to the hospital, but I didn’t know it at the time. I had been told for so many years that the pain I felt from my periods was normal, so when I started feeling pain in my leg, I figured it was just muscle pain and didn’t think much of it. The pain I feel during my periods is much worse than the pain I had it my leg at first, so I had no reason to think there was something wrong. Not until the pain crept up my leg and it felt like my hip was out of place. I couldn’t walk very well. My leg was also swelling. I was also losing my breath easier than normal. Of course, I just told myself I was out of shape. When I got the chest pain from the saddle clot that thankfully broke in half when it got to my lungs, I just explained that away as being brought on by anxiety because I was getting married and was nervous.

    3 days after my wedding, I decided I should go to urgent care because I wasn’t able to walk but a few steps at a time. They sent me straight to the hospital. Coincidentally, it was the same hospital I worked at. The ED doctor came in and said, “You work here, right?” I said, “Yes, in Transfusion Services.” He said, “You work in a hospital, been dealing with horrible pain for over a month now and you waited until now to get checked out?” He wasn’t saying anything in a mean way, more of a joking tone. So, I said back, “When I don’t take birth control and even sometimes when I do, I am in such severe pain during my period and anytime I went to the doctor or ED about it, I get told that it’s nothing and I’m wasting their time. Maybe, I waited so long to come because I was waiting for the pain to become worse that my period pain, so that I wouldn’t be called a whimp and to suck it up.” His response to that was that I must have really painful periods because my entire right leg was full of blood clots and the clots in my lungs caused one of my lungs to partially collapse. It also caused several infarctions in that lung as well, which did hurt pretty bad.

    The worst part of the whole experience is that I was on birth control when I got the clots and even though I was diagnosed with Lupus Anticoagulant, I can’t take hormone birth control any more. I can’t even go on hormone therapy if I ever have a hysterectomy or start menopause. I’m also on blood thinners for life because I was diagnosed with a new very large PE in my left lung last month. Being on blood thinners means I can’t take NSAIDs, so no more Ibuprofen. I am on prescription pain meds, but they don’t do much for my period pain at all. Luckily, I was recently told by my hematologist that as long as I’m careful and don’t take too much that I can take ibuprofen when the pain is unbearable. I had to do just that just a little while ago.

    The pain was so bad. It felt like I was being stabbed by a long, thin knife, in the middle, right above my groin. I imagined the knife going in slowly and then once it had gone all the way to my back, the knife started twisting. At the same time, it felt like there was a long needle being pushed in the same place as the knife, but pointed more upward and piercing my bladder over and over. It was so intense that pain was shooting down my legs and my entire body was shaking, even though I was sweating. Once the pain started to subside, my body was able to relax. It still hurts, but it’s bearable, for now.

    I have figured out a pattern with my pain and it depends on which side I ovulate on that month. When I ovulate on my right side, I get the pain I just described above. When I ovulate on my left side, my left ovary swells and is quite painful. It also causes pain in my back and down my left leg. I also get really bad pain in my neck and right shoulder almost where it connects to my neck. My joints in my hands and fingers also hurt.

    I don’t know why the pain is so different when I ovulate on my left side. It’s more of a achey soreness kind of pain that lingers and drains all my energy. When I ovulate on my right side it’s a shrap stabbing pain that comes in waves and intensifies with each wave and there’s not much relief in between at all. It also drains my energy and leaves me exhausted.

    I really wish to find a doctor that will listen to me about this. I want a hysterectomy. Now that I’m at a much higher right of dying from a blood clot to my heart, lung or brain after surgery, it’s now going to be so much harder to find a doctor willing to operate on me. I can’t live the rest of my life dealing with this debilitating pain every month. I’ve already been dealing with this for so many years. My teenage daughter doesn’t need to see her mother curled up in a ball crying because the pain is so bad. Living with this is a nightmare. If I didn’t have the people I love around me, I would swear I was in hell!

    • Mary

      My name is Mary and I have been going through abdominal pain for several years now. I first was diagnosed with ovarian cysts. The gyno I saw at the time said that the cysts wouldn’t necessarily cause any pain, that he had a patient in the past who had had one the size of the grapefruit, and she had no pain. That left me thinking…ok then what is the cause?? Fast forward a few years…there was a time when my abdominal pain was so bad I went to the emergency room…again nothing diagnosed. I was having horrible pain with some bleeding. New and improved gyno found I had a large fibroid just inside my cervix, which was removed. I started to have hot flashes…I was in my early 40s…stopped having my periods. Thought I was peri menopausal, but when the blood tests came back…the results showed post menopausal. I went a year with no periods. He has been keeping an eye on my ovarian cysts…I have had several internal ultrasounds. They said my ovaries were kissing…i.e. touching each other. He also said he saw endometrium within them. Now I have had bleeding again after being diagnosed as post menopausal. Diagnosis finally given as endometriosis. My Mom was also diagnosed with endo and had a total hysterectomy when she was in her 50s. I am now 46. I have had days where I feel completely exhausted. I have severe pain some days in my abdomen…but also in my right hip. I also have had lower back pain. The other pain more recently is with my sciatic nerve pain…like a literal pain in my butt…on the right side, that sometimes goes down my leg. This has been bothering me more recently due to all the driving I’ve been doing to take my husband to all his therapy/treatment appointments. (He was just diagnosed on Christmas Eve with brain cancer). I came to this site…I started crying as I was reading some of the posts…because I’m starting to realize…all my different pains throughout the years …they’re all interconnected. I’m not crazy.

  14. Shai-ane Winstanley

    Hi im shai-ane im 18 years old.
    I have been having cronich stomach pains also in my hips and where my overys and tubes are also just below my belly button. I’ve had them for about four years on and off. The only way I can describe the pain is it feels like my insides are tearing the only way to numb the pain Is by putting pressure on where it hurts. Ive been to the doctors and hospital had scans and everything has come back normal. I feel like no one wants to help me as they dont understand what’s wrong with my body. I get woken up by the pains that im experiencing. Lately its been every day. The pains have no relation to each other. Ive been trying to look into all the pains and I can’t seem to find that relates to them. im starting to get worried as it’s getting worse. Feel like no one can relate.

  15. Christine

    I Have been having symptoms since my second C-section and tubal ligation in 2001. Varying in severity over the years. Severe enough at some times that I ended up in the ER once because of the pain. I have had an ultrasound which of course was fine. Was told several times that It is IBS. Another Dr. Mentioned endometriosis but said it wasn’t bad enough to do any follow up because I hadn’t missed work because of it. Had to laugh at that. Pain doesn’t stop me from doing my job. I Would have tried going to work with a “broken” bone that required surgery if I hadn’t been talked in to going to the hospital to have it checked out the day before. I have gained a lot of weight over the years and started a diet . (A sensible one watching calories and trying to eat healthy and exercise) and I have lost a decent amount of weight. But I am noticing an increase in my symptoms. Has anyone else experienced this? At first I thought maybe the exercise, but haven’t done any for probably 2 weeks now and symptoms continue to worsen. Just wondering if there could be a connection or if it’s a coincidence or something else unrelated.

  16. Lynda

    I find these posts so helpful as I’ve been living with the disease since I first ovulated at 11 and am now 53. I don’t feel so “alone.” When I was 11, I began with these extremely painful ovulations, I said something to my parents and my father replied: :shut up and go to bed.” Obviously he thought I was just being whiny. I honestly thought my Appendix were bursting, and I would be dead by morning, that would sure show them! I have been peri-menopausal since 37, diagnosed with Endometriotis when I was 19.
    These last few years of peri-menopause I have been in pretty much a constant state of pain or discomfort, right now I’ve got the pain shooting down from the abdomen to my lower thigh.

  17. There are many causes of abdominal pain and it is actually important that your medical doctor determines what is the main cause. It can range from Endometriosis,Stomach virus and other conditions. usually, pain medications can ease the pain

    • Humaira

      Hi,
      Has anyone here tried Endovan? I’ve ordered it after trawling through forums and emailing them back and forth a few times and hopefully will let everyone know how I feel and if it helps. It seems almost too good to be true, but I’m only 23 and not interested in any surgical procedures and very against pumping additional hormones into my body. This is totally herbal and the only things that seriously convinced me to give it a to was they they have a money back guarantee. It’s quite pricey but you can’t put a price on health right?

      • You will have to let us know how it works for you please! I’m interested in trying something more natural. I’ve heard of it but turned away from it mostly because I thought “there’s no way you take pills to just make it stop.” I’ve had two laparoscopies and am now on Lupron but Lupron sucks for than anything. Don’t take it for anyone reading. The side effects are not worth it and it has not improved how I’ve felt. My doctor claims it’s the only thing that shrinks the lesions and endo. But again, I’m the patient and I’ve had very uncomfortable side effects that I cannot deal with anymore. So please keep us updated & let us know if it works for you! :)

  18. Sara

    Hello I am 20 years old and this is the first time I hear about endo. I don’t know if that’s what I have but my periods are very painful and the leg pain is just unbearable. It feels like something is dragging the insides of thighs. It’s usally always my right leg. My period is also usually heavy I change pads a lot during the day. I have always had painful periods but I thought it was normal. Should I see a doctor?

    • Paige

      Yes, the earlier the better. Pain is nothing to mess around with, especially endo. It wouldn’t hurt to get checked out but you really should explain your symptoms and say you are concerned It is endo. I’ve been turned away from gynos for the longest time even though I have endo. Not many of them understand it nor look for it so make sure you bring up your concerns.

  19. Kumud

    I am not really sure if the pain I am going through is because of endometriosis. I am yet to get it diagnosed by my gynae. I am 27 and feeling periods like cramps from almost a week while period for this month is not due so early. I had very painful and dreadful during initial phase but since 1 year pain is becoming bearable and I never experienced irregularity, they are always on time like 27-28 days of monthly cycle.

    But now, it’s been a week, I feel severe pain in my left lower abdomen, pain rushes to back and down to left leg. Experiencing mood swings, not feeling like to go anywhere, and today I realized some tough stone like stuff on the left side of the abdomen.

    Not sure what this problem is.

  20. Pamela Joy

    I was distressed when I read this page of all these women suffering. I have had endo and surgery and it is relieved. What is being discussed here is not endo but Pelvic Congestion syndrome!!! I know because I have it now. Get to a vascular surgeon not a gyn and not a general surgeon but vascular!!!!!
    I am praying for healing for all of us. And don’t give up and let some male doctor say oh it’s a woman thing probably endo. ( I so hate that attitude) I am praying for all of us! If you do have endo have laparoscopic surgery and be done with it. You can also have ablation (burning out the lining) if your not going to have kids any more. You have options!!! Don’t give up!!!! You are valuable, important and beautiful! Believe it and take care of yourself, your all you’ve got.

  21. Lisa

    I’m 46 years old. I have had painful periods since the very first one. I remember telling my mom during my first period that I wanted a hysterectomy. In 2012 I had a partial hysterectomy due to fibroids. My periods were so heavy and painful that I was severely anemic. My surgery was laproscopic. I never thought to ask my OBGYN if he found any endo while he was doing my surgery. About 10 months later I started having severe cramping every month and pain on my left side that felt like my ovary was in a vice. The pain is in my back and goes down my leg. It literally lays me out for a couple of days. I also have pain when having a bowel movement and constipation. Then a few months later I developed a large lump above my scar. Hernia was ruled out. Turns out it is a large mass of endo between my belly fat and muscle. Every month this lumb feels like an open wound, it is so painful. I also continue with the internal pain, the shooting nerve pain inside, ovary pain, low back pain which radiates into my leg. I have seen a general surgeon who agrees that the lumb is likely endo. He wants to remove and biopsy. My OBGYN will also be present to do the scope to find and remove any other lesions found internally.
    Have any of you had recurring endo after a hysterectomy. I have both of my ovaries and want to keep them. I don’t want to be thrown into menopause. I just want this pain to be gone. I thought that after i removed my uterus I would be done with all of this.

  22. very informative article. the few years that i have had endo have been terrible. there are more myths sorrounding the condition than facts. i hae learnt through experience that no pain kiler or hormone therapy will ever help. they are very temporary and will only worsen the condition in future. get to the net and google alternative herbal remedies.

  23. Franchesca

    I have been wondering for yrs if I was just crazy lol. I was always going to the ER all the time for really bad pain in my ovaries and back pain. I am pregnant right now so I can’t get checked for endo. Before I got pregnant my Obgyn checked my ovaries cause they were killing me so bad . she said after I’m done having kids I will prob need to have a historectomy but I’m only 25. So my question is should I get checked for endo first?

  24. Christa

    My pain usually starts about 2-3 days before my menstrual cycle and then last about a week or so after my cycle. Only on my right side directly between by belly button and csection scar and it feels like a burning, pulling sensation. Im fine when im sitting but going from a sitting to standing position hurts horribly. It also hurts when my pants rest on that area. Does this sound like endo to you all?

  25. Michelle

    So I have had the following going on for the last few years:
    – Really bad back pain the first few days of my period (every period)
    – Pain that radiates down to my legs
    – Sometimes an urge to urinate
    – Sometimes constipated
    – And just a feeling of pressure down in my pelvic area
    -Retaining water – swelling is mostly in my legs and ankles
    My OB just suggested surgery. I was kind surprised, he was so quick to suggest it. (Probably because I told him we wanted to try to have kids this year after our wedding.) I was shocked when he said surgery, so there was a lot I didn’t get to ask him.

    Does anyone else get the above symptoms?

  26. Beth

    Hi Everyone,

    Excuse me if I ramble but I had my laproscopy yesterday and have been up until 3am worrying.
    The consultant came to see me after the procedure and explained that I’ve got a significant amount if endometriosis. He showed me some photos of it but they made no sense and said that it has attached to both sides of my bowel, my bladder, pouch of douglas and there’s a small amount in my pelvis.
    He told me I’d need to have a bowel scan to see if it has gone into the bowel (the waiting list is 3 months for this) and following the bowel scan I will need a 4-5 hour operation to try and remove the endometriosis.
    My head is full of all sorts of worries and what if I need to have a colostomy bag because of it being on the bowel as well as the hard times ahead.
    I’d set myself up to think that they wouldn’t even find any endo and if they did it would be removed yesterday. Now I’m no better off but have to worry about more surgery in the near future. My mum is worrying about me too but she said that when I reach menopause I’ll be ok. Is this true? I’m only 31 now and menopause seems a long time away…
    Has anyone been affected by endo in their bowel and how did you get on?
    There was a nurse lady there who gave me her mobile number to text her with any worries but is there anything I should be asking her?
    Any advice is truly welcomed and I hope to hear from you soon.
    Take care,
    Beth x

    • Paige

      That is really unfortunate that they only diagnosed you during laparoscopy and weren’t prepared to treat it and get it out. Who did your surgery? As in what type of doctor? My doctor was a gyno and infertility specialist (she deals with endo because most of her patients can’t get pregnant) and both were able to diagnose and cut it out. Also, there was endo on my bowels or sticking to my bowels. Yeah menopause may help, hence why I’m on the drug Lupron which puts your body in menopause. The pain is much more tolerable and better however the side effects truly suck.

    • Kimberly

      I had the same thing happen. My laparoscopy was 6 weeks ago for a cyst removal. I asked if they found endo if they would remove it and she assured me they would. They found it and it’s widespread but removed none of it. Did your lymph nodes swell at all after your surgery? Mine are still swilled in my groin and armpits. I’m following up with that but was wondering if anyone else had that experience. I’m going to try to do some natural remedies. I will keep you posted.

  27. miranda

    I was diagnosed with endometriosis when I was 26 I am now 29. I went in countless times to the doctors office after having many ultrasounds done and each one showing signs of multiple cyst ruptures my doctor had finally come to the conclusion that I had endometriosis. We tried every birth control pill but each one made me worse so we tried the depo provera it worked for a little while but like the others it had stopped, we then decided after 9 months of failed attempts to do the laparoscopy. When I had woken from surgery she had told me that I was one of the worst cases she had seen, my endometriosis had spread up to my ribcage and had also attached itself to my stomach and ovaries. After removing the lesions they noticed my stomach and uterus had also been attached to each other I was told that everything had been removed and seperated and that the pain should now go away and that if it did come back it would take about a year. A month after the surgery the pain was back and was getting worse each month we then decided to try the lupron shot which I personally would not recommend as it had intensified my pain and just made me feel like I was hit by a bus constantly. I am now on pain management until we decide on which route would be best for me surgically but even with the pain meds I am constantly in pain from the time I wake up until the time I go to bed. I find it comforting to know that there are others out there that know how excruciating this pain is, there is pretty much no one around me that understands the pain I’m in and sometimes I just want to snap!!

  28. Rebecca

    I have been told by doctors that I have endometriosis, but never had the biopsy to be “officially” diagnosed. The doctors have said I have all the symptoms that mirror this horrid disease. My periods are awful and I cramp almost every single day no matter what. The pain radiates from the front to back or back to front, and it ALWAYS goes down my legs. I have been on both the birth control pill and shot, and was told it would help take away the pain. Birth control only made it worse, plus it made me feel like I was pregnant. I have been told the only way to escape this nightmare is to get a hysterectomy. If anyone has advice on how to manage the pain I would love to know what it is. Thanks!

    • Humaira

      Here is my Endovan update:
      I wanted to give it a good go before I posted.
      My verdict is please please try it, you have nothing at all to lose and I can’t stress how heart breaking it is to hear everyone’s stories and to know that someone else is having to suffer that level -or even worse- amount of pain.
      I know you don’t know me personally and it makes you skeptical and I have to admit I was the most skeptical person, even emailing them to ask why most of their reviews were on their webpage and why they weren’t more recognised, but please from one sufferer to another, for your own sanity and to be in control of your life give it a shot. I’m not even one to post things online but I know that if you’re reading this, it’s because you’ve suffered and you’ve had enough and are just looking for answers, for someone to just understand or even for some comfort.
      I will keep you all in my prayers. May God give you all a speedy recovery and strength to overcome this.

      I’ve been taking it for a few weeks, here’s what I found;
      -The killer pain I had in my right ovary area usually meant that my whole leg was in pain, I noticed in the first week that the leg pain started decreasing almost immediately.
      -in the second week I noticed that the pressure I always had on my hip was decreasing
      -I felt more energetic and I would usually have to crash out in the afternoon for a few hours because I felt lethargic, and it didn’t feel the overwhelming need
      -I used to always feel like I needed to use the bathroom because of pressure in the pelvic area, and although I still need to go because I’m drinking a lot of water, the pressure isn’t there anymore
      -I had nausea in the first week, not sure if it was a symptom of severe endo pain as I usually do or because of the capsules
      -in the third week, this is my first time coming on my periods after taking endovan and excuse the info but for the first time in years I don’t have clots which I had always thought as normal and imagined everyone got it
      -I also didn’t break out as I usually do which makes me wonder if endovan is cleaning my system or that breakouts are because of endo
      -for the first time in a while I didn’t have that severe pain on the first day where I can not even stand and am reduced to tears despite having an extremely high pain threshold
      -headaches have almost stopped
      -back pains considerably decreased
      -as of yesterday I noticed that I hadn’t been bloating much for this time of the month and overall bloating is starting to go down.

      I hope that’s thorough, please give it a shot. Ask me any questions if you have them and even if you’re like me and haven’t been diagnosed officially then give it a shot. It’s all herbal, there’s nothing to lose. And please my advice would be to try and stay off the drugs and hormones, they really mess up your system and wreak havoc internally.

      Take care,
      Sincerely
      Humaira

  29. Sharee

    Having kids does not cure endo.
    Post partum seven months and another endo nightmare.
    Diagnosed at 19 with superficial endo I had laparoscopy and ablation with hrt therapy for three years. Medroxyprogesterone or depo tablets 10mg × 3 times a day.
    First child 2003, various complications.
    Second child 2008, surgeries and awful issues with endo.
    Third child August 2014 chronic endo whilst pregnant, retained products, more surgery post six weeks.
    7 months on it’s been primolut hrt all my hair fell out in a short period of time and isn’t better yet only worse.
    Fourth period post hrt and not a candidate for further surgery as a risk of bleeding complications like birth and post birth outweigh the necessity to conduct surgery. Had more than two medical opinions from specialists.
    It’s put up with it, no more hrt or pills.
    I can’t even get my tubes tied because of risks. (Lost to much blood during c section and post rpoc correction and ablation surgeries.
    Knowing that staph infection has to be identified before classification of endo.
    Chronic endo has disruptive consequences. But after googling endometriosis pain and stumbling on this thread it makes more sense now.
    Hot poker stabs to the abdominal region, sciatica and hip issues, leg cramps, kidney and back pain. The intense feeling like someone is playing marionette with fishing line all over my abdomen, twinging and pulling.
    That’s every other day when I exercise, strenuous activities or deal with a bouncing crawling seven month old.
    It’s strangling my rationale about pain threshold and knowing it’s as gamble of good days and bad days.

  30. Jenny c

    I am 31 and hv been having surgery to blow and burn my uterus since I was 13. I currently hv no insurance and endometriosis is back from three years of no surgery angry as hell ! What do I do?

  31. margaret whitaker

    It’s always comforting to hear testimonials from fellow sufferers. I’ve found doctors and people who don’t have Endo cannot grasp the suffering and impact this has on your life. Painful ovulation that doubles you over, radiating leg and thigh pain, cramping that puts you in a fetal position for hours, chills, nausea. No one understands why you can’t go shopping because you flood so much you are chained to a restroom. Wearing the thickest pads with tampons that have to be changed every hour. Egg size blood clots that fall out when you stand up, sleeping with bath towels under you,having anemia. I welcomed the hysterectomy I got at age 50 only after going through 82 pads and tampons in one weekend, sometimes soaking through every 15 minutes. They found Endo, scarring, adhesions, congested fallopian tubes, fibroids. I found freedom when I had a hysterectomy.

  32. Jane

    I’m 29 and have been dealing with my endo pain for years. I’ve had 2 surgeries over the past five years. The most recent my left ovary was attached itself to my intestines from the scar tissue. Since the most recent surgery I have been in daily pain and was referred to a pain management doctor. I found a birthcontrol that keeps me from bleeding the goal is for me not to have my period so no more cyst grow. I’ve been seeing my pain management doctor for a year now and we are trying to find what works best for me. Even when taking 4 Narcos a day it just dulls the pain only for a short time. I can’t sit for longer than 30min or stand longer than 30 without a spike in my pain. I can’t go out and have to cancel plans with my friends all the time. My life is work, home then heating pad.

  33. Nicole

    Your article had me in tears because you were able to put into words exactly how I have been feeling since my first laparoscopy for Endo 10 years ago. I had hoped it would go away after my hysterectomy 12 weeks ago but the fatigue has returned with a vengeance. All I can do is make the most of the good days.

  34. Mika Gibbs

    My name is mika and I have had this illness since I was 13, my very first period was when I was tested and only because I was sent to the er from a local park in an ambulance. My parents told me I was just faking it, even with the doctors saying oh no she does have it until my mother recently was diagnosed with it. She apologized after she was treated and told me she wished there was something she could do to help me. I have what the doctors call “stage 4″ and I’ve been deemed basically infertal. The chances of me getting pregnant is like 1 in 893. Anyway it’s a pain every place of employment I have to tell them that once a month I am bed ridden for 2-3 days which usually causes me to lose my job or never get the job.

    The pain is the worst part, feels like I am paralyzed from the waste down but I can feel the pain. What sucks more is having my husband have to watch me turn and toss, roll in a hot bath for hours, or fetal position on the floor/couch/or bed.

    I am turning 26 this year and with the odds against me having children it has come to my attention that the only person I will have is my husband and friends until the day I die. And the scariest part about that is what if they all go first?

    More needs to be done about this because it doesn’t have the attention it should have. Millions of women have it I know that doesn’t seem like much world but we fiddle over things for much less.

  35. Phoebe

    Hi everyone I was diagnosed with PCOS (Right) teenage years. Im am now 30. I have had irregular period since then that I got used to it I just used a baby diaper that can hold my bleeding (probably 3 of it in a day) with big clots and Im much comfortable when moving. Sometimes my period would last for more than a month or so. But because of my profuse bleeding I had 2x dilatation and curetage and had 1 blood transfusion. My period before wasnt painful its just uncomfortable but recently year 2012 I experienced pain a sharp stabbing pain in my bottom like somewhere in my bum or my tail bone or my perineum its just hard to know where about is the pain but its really painful that I cant even sit, stand or lay properly. They were times that I cant walk because my leg where numb (Limping). Its annoying because the pain stay for more than a month. On and off pain. Been to a gyne gave pain killer I had scans like every week but didnt even help at all. 2013 I had my hysteroscopy done polyps found but nothing to worry about according to doctor. 2013 had my colonscopy they all think it might be just an IBS but its all normal. I jave changed my gyne by the way.
    Year 2014 of Dec I decided to go back home (Philippines) to seek treatment they scanned me again and to my surprised I am now diagnosed with PCOS left and right. I had my smear done as well no cancer only to tell me that I have cervicitis. Doctors in Philippines gave me pills and metformin to control my bleeding. Came back from holiday with my pills and metformin last Jan 2015.
    In Feb 2015 I have been to A&E twice the first visit they gave me pain killer still nothing for them to do just take the pain away. After 4 days the pain is still there and its even worse even the pain killer didnt help and because I was shivering the day before and nausea even though Ive already stopped taking metformin, we went back A&E and was confined for 4 days. They scanned me and they saw like a fluid like sac they told me that it might be a cyst that ruptured that causes my pain. I had course of antibiotic and pain killer while I was admitted and even when I got discharged I still continue to have that course of antibiotic. Up until now I havent been to work because of this annoying pain that I even cant explain what the h*ll is really happening to me. Doctors keep on telling me nothing to worry about might be infection *sigh* . I have my appointment this 24 of March I hope I can get a proper answer.

  36. Paige

    Ladies,
    What are we doing after we are diagnosed with endo? I would really like to know all the options out there. I’ve had 2 laparoscopies which have been great and have done birth control which worked pretty well but Lupron has been awful for me and I want off immediately. I am trying zoladex now which won’t be intramuscular which is supposed to be not as severe considering the lupron side effects have been awful. My doctor told me to take my last shot which will last 3 weeks but I’m being kinda stubborn and don’t want to take it because I hate Lupron that much.. I really can’t fanthom being on it anymore. My immune system is awful, headaches are an everyday thing, my mind is foggy and my energy is super low. I hope my period doesn’t come right away if I decide not to take this last shot and wait for the zoladex to come in. I’m not sure when my period is supposed to return. Please let me know how you are feeling after your treatments and what you are doing!! Thanks!

    • I’ve just been diagnosed having suffered for a good few years, whilst I was already taking birth control pills which thankfully helped keep things ‘at bay’. Had a laparoscopy purely for diagnosis and found pretty widespread endometriosis: bladder, ovaries, uterus etc. Started my first course of zoladex last week; no real side effects so far (apart from some headaches and burning pains) so I hope it will be effective and hopefully reasonably hassle-free for you.

      • Paige

        If you don’t mind me asking who is helping you with your endo? A specialist, or gyno? Also, did this person tell you birth control was bad for your endo? I’m just curious because I read so much and have been told that bc and estrogen is bad for endo but then you see that it’s used for endo and personally being on it, I felt fine.

      • Hi Paige my doc is a gynae No was never told bc is bad for endo in fact the opposite however I initially started using bc as I was suffering quite painful periods which was probably the beginning of endo.. Though I’ve heard bc don’t always work for everyone so I think that might have been the case for me. Bc is a very effective treatment for dome but the longer I was on bc the worse my pain seemed to become.

  37. Reblogged this on Invisible Pain Warriors and commented:
    This is a great post! Such an accurate and very relatable explanation of this disease and how it feels to live with it. 💞

  38. ashlea

    I need help….I was told when.I was about 18 that there was a possibility I had endo… bc mu periods where so painful and heavy….I have had three children since and had my tubes tied….I am now dealing with very painful periods again…..so bad im curled up in pain begging my fiance to massage my pelvic area…. the pain is going into my left hip and down the side of my leg….also a couple days before my period I will have low back pain and pain in my rectum….when I have a bowl movement or even sometimes sitting hurts….I was diagnosed with pelvic inflammatory disease at one point…. but now the pain is changing….. help me please has anyone fully diagnosed with endo dealt with this????

  39. Nicole

    Hi im nicole. Ive been suffering with what was recently diagnosed as endometriosis. 2 years I was pushed away “its just a cyst, cramps are normal” finally I was sent to see a specialist and 2 years later im 1 week away from having a laparoscopy. I have severe pain almost 3 weeks of each month. Painful sex I cant get out of bed easily and I fall to the ground in crippling pain. I wouldnt wish this disease on anyone.

  40. Rachael

    For the last 4-5 months I’ve had an extremely painful period, the pain would typically start two or so weeks before I started, and last a couple days after ending (I’ve never had painful periods before, so this is all new). The last two months I have had constant pain (before, during, and after my period) on my lower left side; I can only describe it as someone pulling, twisting, squeezing, and a stabbing pain constantly, some days are more painful than others. The pain got so bad I finally went to the doctor, they did x-Rays, as well as both abdominal and vaginal ultrasounds; I was told there were two cysts on my left ovary, and that they wouldn’t be causing my pain and were nothing to really be concerned about. I returned to the doctor about a week later still suffering from the constant pain, which happened to be getting worse. I started to get a pain shooting up and down my leg (it feels like someone is taking a saw from my lower left side down to my knee, then around to my lower back), headaches often turning into migraines accompany this daily pain; my doctor referred me to an OB which I went and saw today. The OB basically blew me off, didn’t listen to a word I said when describing my pain and how I had been feeling. She didn’t even do a pelvic exam; her nurse performed a quick two minute (if that) vaginal ultrasound, she assured me my “lady parts” were fine and in a few week my cramping would go away. I was baffled at how little she cared! Clearly if she were listening to me she would know my “cramping” is constant pain, which often gets so bad I double over, I walked out of that doctors office in tears; something is wrong, being in pain for almost two straight months is obviously not normal. I guess the reason I am writing on here is because I feel (unfortunately) I might be suffering from endometriosis; I’m not to sure where to go from here. Does what I’m describing sound relatively familiar to anyone suffering from endometreosis? Any comments and or suggestions would be so helpful to me!!

  41. Brittany R

    I am 29, 8 years ago I was diagnosed with endometriosis by laparoscopic surgery. It is in the back of my uterus and caused terrible groin, pelvic, hip, back, and bowel pain. I ended up having Lupron shot for 4 years and helped a little but does put your body through menopause. Years later I had a son, didn’t have endometriosis issues for about 3 years after having my son and now the endometriosis is back and worse than ever. The most frustrating part is when your in so much pain and you go to er or urgent care and they won’t do anything for you bc ct scans and blood work show nothing is wrong even after telling them you have endometriosis they don’t think pain is too serious. My pain is a stabbing, burning, cramp, ache in pelvic area, lower abdomen, groin, hip, inner thighs, vagina, and bowels. I’m not able to work very much due to pain which means I can’t pay bills which equals stress and seems to make pain worse. If you are going through endometriosis or what you think is endometriosis keep going to ob/gyn appts until someone does something. Ob/gyn seem to be very knowledgeable about endometriosis these days so don’t give up!!!

  42. I have had endo for many years but with little to no pain. Two laparoscopies in the past. A couple of days ago pain in the back started suddenly and it’s not going away. It’s strange pain and not like back pain. Can endometriosis cause such pain in the lower back on both sides just above buttocks

  43. CB

    Since I was seven have a fluid filled cyst on my L. Kidney go to the Urologist every year its been getting smaller which is better and one day can leave my body for good which is what the doctors etc want. However, my UTI’s or any kind of infection’s have increased and the pain has gotten worse. This past year it pain has become some days un-bearable to were have gone home from work went in to one doctor who he was like saying for months “its just probably your period is coming.” or “its all in your head.” the next day collapsed at work and couldn’t move my coworker rushed me to the Doctor was put in a wheel chair literally couldn’t walk at the time and another doctor asked me what my symptoms where and she said I possibly had a severe infection possibly long enough that it would’ve killed me. She sent me to the hospital and immediately got me on Hospital strength Antibotics and Iv’s and litearlly the pain was so bad my body was so toxic from a UTI that had been un-diagnosed that had for months that the nurses had to hold me down. After a few days my body was being flushed of toxins I was told that the other doctor how could that doctor seriously not see this? Two months after being Hospitalized I felt AMAZING but now the pain is back and WORSE I blacked out and then one day went blind for a few minutes so went into the doctor got stuck with the one never wanted to see again the one who for months could not see I had a very bad infection in my body well saw him he said “If the pain continues or gets worse and last after a few days come back” well came back twice and each time he keeps saying “come back in a few days” or “its in your head.” so made an appointment Tuesday with a different doctor a specialist doctor. The pain have tho as of lately for the past year is different from the pain from the pain get from period/pain my cyst causes.

    Here’s a break-down
    -Pain gets worse around menstrual cycle
    -Stools become very loose diarrhea or constipation only around then and then after cycle its normal again
    – Shooting pain in lower back, rib cage (esp with I breathe deep) pain gets worse when standing or sitting too long, pain radiates down back of legs and into neck/shoulders
    -Urge to pee a ton/burning/itching
    -Pain sometimes causes fainting, blurred vision, unable to move or concentrate at work/or think

  44. dana

    I have been struggling with endometriosis for about twenty years. I try to out on a happy face. And do normal things. I now have cysts on my ovaries as well. Most of my organs were attached to each other several times. My family cannot understand the pain nor do they want to. I do not lay around. I am the one who does it all around the house and yard. And works full time. It is now to the point I can hardly walk. The pain is amazing. I can hardly stand it. Three surgeries….years of lupron. Just feel so defeated. .

  45. Kimberly

    I recently was diagnosed with extensive endo during a laparoscopic surgery to remove a cyst on my left ovary. They found the cyst during an ultrasound after I had pain from another cyst rupturing. Before that cyst ruptured I had bad cramps and back pain during my periods but nothing 4 Advils couldn’t fix. They tried putting me on birth control first and I suddenly got anxiety and panic attacks also heartburn and indigestion. I took myself off them right before the surgery. I thought I would be better after the surgery but I lost 10 pounds, I’ve gained six back now:-). I had a bout with insomnia. I had to be put on protonix for indigestion and my lymph nodes in my groin and armpits swelled. My GYNO said she wasn’t concerned that it was normal after surgery. So I went to my family doctor and she is sending me to get ultrasounds. Has anyone had any experience like this? They didn’t remove any endo and suggested I try Lupron before we try to get pregnant. We had already started trying right before the first cyst ruptured. I want to try the natural route first. I have tried to start working out again and getting back to my routine but I get pain behind my knee and in my arms. My body feels completely out of wack. It’s been 6 weeks since my surgery. I have also started having horrible groin and hip pain and I’m not even on my cycle yet. I start in 2 weeks. I feel like the surgery turned the endo on. If anyone has had or heard of someone having any experience like this please let me know.

    • Paige

      The surgery was for a cyst which they removed but not the endo? Using Lupron may shrink the endo but definitely not get rid of it. I guess they weren’t prepared to find that? But still, they should set you up to have a surgery.. If they know what their doing. Also have you tried to get pregnant before? You may not need the help of Lupron and what not, so definitely try before you go down that route. Also I was on Lupron for the past 9 months and just switched to zoladex which is similar. I would not bother with Lupron. It was awful, even with added estrogen to help “relieve” symptoms.

  46. cindy

    I have had bad periods since I aS 14. I am 45 n now r having more painfully periods. For the last six months to year I have had two periods a month. I usually have bad cramps for first two days. I am currently in my fourth day with extreme pain fatigue. It hurts to even move or walk. Don’t know what to do.

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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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