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.

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About endohope

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

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

  1. Pam

    I was diagnosed with endometriosis 7 yrs ago. I have very heavy periods. They are irregular and last anywhere between 7- 11 days. First 3 are the worst. It feels like contractions during labor. Or charlie horse pain in ovary area. Lower back pain too. I lay in bed and cry with a heating pad on for days. I cant function unless i have pain meds for those 3 days a month. Alot of doctors treat me like a druggie. I only need meds a few days a month but those days i truly need them. Looking to get laparoscopy done or hysterectomy. Very big decision but living in pain is not one.

    • Kelly.dorweiler@yahoo.com

      You are not alone this is me to to t. I have been depressed cause I am always stressed when it with come five hours on the floor crying or eventually giving up and just sitting in the bathtub knowing I might have to miss work again… it’s tough . I try not to think about the kids portion because I want kids so much.good luck!

      • monekanicholson991@gmail.com

        Well I know feeling but with God helping us and part about kids would luv have at least one but don’t know yet have Endometriosis stage 4

      • Bre

        I know this is an old post but just wanted to say… please don’t give up on the thought of having children. I know everyone’s body is different but I have endometriosis, PCOS (since I was 11), and was extremely overweight and still conceived and gave birth to my son 3 years ago. It can happen even when all the odds are against you ❤

  2. Heather

    Thank you for this article this disease makes me so lonely and I try so hard to keep everything together – sometimes I wonder if I am just a wimp – but knowing someone else really knows what it’s like makes me both sad and relieved – so just thanks bothering to write about something that is so over looked and covering things like the memory loss / cognitive function ( I thought that was just me ). The way this can affect a woman’s whole life is never really appreciated and I just hope with more raised awareness more will be done. All the best x

  3. Romonda Massey

    My pain is like spasms in my hip joints. Sometimes it feels like im about to give birth. Its hard to stand and when i do stand immediately after 10 mins im in pain. Im a painter in the construction field and i have to work. I just want to cry cause i dont know what to do

    • Heather

      Hi there I feel sorry for you because I am a plumber and our jobs are quite physical and it’s so hard to keep up appearances in front of our customers – it’s difficult to be a woman in what were more traditionally male roles – then for our bodies to let us down is so frustrating. At the moment I have turned to herbal medicine and am already waiting for another operation so I really wish you all the best x

      • Allex

        I’m a rigger and I definitely know how you ladies feel. I’m just over here feeling like my uterus and ovaries are trying to kill me.

  4. Lashonna Gunn

    I deal with this on a daily basis and with No Insurance I mostly suffer waiting on someone to help

  5. Becky

    Finally, I can understand what’s going on. I already had arthritis, in my spine and joints. I have thrombosis, and I’ve had leg, and both hands operated on. I’m 42, and not that old, but my regular meds. didn’t even touch the pain i have on a menstrual cycle. I was diagnosed with Endometriosis today, and P. M. S. D…. I KNEW SOMETHING ELSE WAS GOING ON. Right now, i guess it just helps to know, I was not loosing my mind. My hips, colon, stomach, all that, hurts me all the time. Especially, on a cycle. Hope to get treatment of some kind soon. Not sure what vitamin b-6 will do though.

    • Kelly Herron

      Becky once I was diagnosed after an iffy blood test, a good gynae DR and a subsequent laparoscopy (im exactly the same age as you) it was all systems go. They took away the growth at the lappy and I was PAIN FREE for 3 months which proved to me that something can be done with endometriosis and we can be pain free.

      Unfortunately its back and my DR decided to try shutting down my left ovary (the site of my Endo) with 6 x monthly injections. This forces your body into temporary menopause (I prob was peri-menopausal anyway) so he put me on Livial HRT at the same time. No issues at all with it and once again I’m pain free.

      I’m 4 months in and so far so good. I’m
      Worried what will happen at the end of my temporary menopause which could be either it comes back or it stays away for some time. Coming back eventually though is a likely outcome. Should it come back straight away then I have to consider with my DR whether I have an operation to remove my ovary. This means 3 months off work and some real
      Recovery but time will tell and I’m
      Ruling nothing out.

      I hope you get a good Dr please don’t settle for less. Pain free is so good, you start to feel Hunan again and actually living! Not surviving.

      Best of luck Becky x

  6. Jean

    I ran across this page (diagnosed w/ endometriosis) while trying to figure out why I am almost 2 weeks late, and not pregnant. I’m 38, and have experienced hot flashes, light night sweats, and typical “hormonal” issues for over 4 years now (day h. flashes have started), and am due for blood work (testosterone/estrogen) after showing neg. for pre-meno. 3 yrs. ago. I have suffered with chronic back/neck pain for over 10 yrs. & had no idea that endometriosis could cause so many things I have experienced. Yes, MRI’s have shown degeneration of discs, as well as other things, but there was never a cause/reason for such pain (i.e.-major trauma, etc.) I’m concerned that I might be starting menopause, but it just seems so early! Needless to say, on top of all the neck (causing migraines)/back pain, early/reg. cramping (even during sex), I deal with the hot flashes & extreme fatigue. I believe all of this has caused a bit of depression. I have always been outgoing, never met a stranger & full of life! Now I don’t find interest in things that I used to, & feel down. I apologize for going on about all of this, but I never knew it could be a possibility, since Dr.’S have never mentioned it. This article is very informative, and don’t feel so alone when reading all of the feedback. I guess I’m just wondering if this can all be caused by endometriosis…it’s a bit of hell on Earth! Thanks so much!

  7. Beverly Hetndon

    Thank you for the article. I was diagnosis when in late twenties or early 30 was not able to have children, I did have a beautiful child who us an adult and 2 miscarriages was put on hormone Med. I am 69. I would get the pains once or twice a year like someone hit me gorin double up can’t breathe and woukd continual off and on for a day. When I went into real menopause I would get three to four times a year but only last a few hrs. Now in late 60. Comes more often last longer and pain is even worse I would think this woukd not be a normal thing. Any suggestions to head me in the right direction before I kill someone when they hit when I am driving?

  8. Ive been reading lots of these articles having recently diagnosed (provisionally) with endo, having had symptoms since I was a teenager. I am now 31, dealing with pain and fatigue every day. I thought it would feel reassuring to understand my illness better, but I actually feel extremely isolated and deeply aggrieved. This blog has been very useful to me, thank you so much for sharing.

  9. Heidi.L.Turner

    I am 19 and have been struggling with the pain since I was 16,recently I recieved a laproscopy in hope that they would find the cause of the pain,and the results were that I have endometriosis and polysistic ovaries but it cannot be removed as I am too young,I get so much pain around my lower back,lower abdomen and even joints such as wrists,ankles and hips on a bad cycle. I do believe that people should be aware of endometriosis,and this page is a great way to describe it.

  10. Morgan

    I have not been diagnosed with “endo” but I believe I have it. My stomach pain is exactly as described above and it brings me such relief to be able to actually put that pain into words. I DO HAVE A QUESTION. Could you just have the stomach pain and not any other pain? My menstrual cycles are normal and somewhat painful but nothing extreme. I have been gaining lots of weight but I am not sure if that is caused by this or if something else is the cause. I have gone to multiple doctors who say it could possibly be constipation (but that is not the same pain I am feeling) my OB-GYN says that it “might possibly” be endo but he would have to do surgery to confirm. Thank you for writing this article and giving me some sign that someone understands how I feel.

  11. jordan

    Im 22 years old this started happeningv3-4 days ago. I thought the symtoms were pregnancy but i got scared. I exspierence headaches,lower abdomial pain which leads groin, sleepin is sometimes inpossible, i get chills, lower back pain, hurts to go to the bathroom,hard to walk, the pain always comes around when i goto bed or when i wake up, im spotting not having a full period, dizziness,and dont what or why this is happening.

  12. linda

    I battled endometriosis for years and I am currently taking vitalyzyme . I heard it gets rid of adhesions and scar tissue. It’s been e weeks and so far I am feeling so.e relief.

  13. Jane

    My name is Jane and I just want to share my experience with Endo. I am 34. I had period pains since my teenage years. I was diagnosed with Endo back in 2011. It was a chocolate cyst in my right ovary the size of a golf ball. I went thru my first lap. The surgeon drained the cyst and remove most of the Endo scars and lesions in my uterus and other areas in my abdomen that they were able to see from the lap camera. I felt better after that. My OB recommended BC pills to regulate my hormones so I took that and it helped me get thru period pains until me and my husband tried to conceive in 2014. I did conceive 2 months after going off the pill but I lost the baby. It was the most emotionally painful experience I had to go thru. The doctors couldn’t tell me the reason why I lost the baby. I’m thinking my Endo may have contributed to it. I went back to the BC pill because the period pains came back and I felt like it’s worst than before. After a year and a half on the pill, I went off the pill again to try to conceive again. I haven’t been able to conceive yet but it’s been 7 months since I got off the pill and every period pain is getting worst. I tried to change my diet trying gluten free, vegan and i think that helps a little bit but it’s hard to get on a strict diet because of our busy lives so sometimes I eat gluten and meat. Evening primrose oil helped my other symptoms like lower back and leg pains. I just recently tried acupuncture and castor oil so I don’t know if that will eventually help me. Sometimes, i just breakdown and cry but I’m trying to be strong and I wish you all the best ladies.

    • Jess

      You hang in there…ive had 2 miscarriages since being diagnosed and i am now pregnant yet again..its bittersweet because i cant help but think I’ll miscarry again but have the highest hopes that this one will carry through. I suffered through my pain for the last year because i was so determined. It drains you i know but dont give up! Have you tried fertility pills to help with your ovulation?

      • Jane

        Thanks Jess! It’s great to know that there are people out there who can relate to my situation. I’m praying for you and your baby!!! Keep the faith! I haven’t tried fertility pills yet but I will look into that.

  14. Sue

    Hi, Could someone please confirm whether diagnosis of endo can only be done by undergoing surgery?
    I have had a constant struggle for the past 14 years, I have been told to wait until I want to fall pregnant in order to determine whether or not I do in fact have endo.

    Am I seriously supposed to just wait in agony until the day I want to conceive? And when that day comes, I wouldn’t want to then only start treatment if I do in fact have endo as I am already 30 and such diagnosis and treatment could take up to a year (so I have heard?)

    I would appreciate advice in this regard.

    • Brenna

      Oh my, I am so sorry someone has told you this. You need to find another doctor! I don’t know what their reasoning would be. Yes. The only way to diagnose endometriosis is through laparoscopic surgery. There is no other way although it can be suspected through symptoms. I don’t know why they would say you need to wait until wanting to conceive… while the leading cause for infertility is endometriosis it doesn’t mean all people with endometriosis cannot fall pregnant this doesn’t make sense as a diagnostic “tool”. However, following the removal of endometriosis growths many women have improved fertility. But really, it all shouldn’t centre around your plans to have babies that is stupid I hate when doctors ignore the pain we experience which unfortunately is all too common. It is not unreasonable for you to want the surgery for diagnostic purposes and to relieve pain. Sadly it is something we all have to fight for time and again and it’s not easy but well worth it. My advice is to go through all the doctors you have to (I know it is not easy) until you find one who is listening to you and compassionate to your painful experience. Best of luck!

      • Latoya

        Hello everyone. Sue I agree with Brenna. I to suffer from both Endo and PCOS. I started having pain at 13 when I first got my period. My mistake was I never told anyone about what I was going through. I bleed for 8 days heavy. The first three days were horrible. I was diagnosed with PCOS at the age of 23 and Endo at 26. I just turned 37 last Wednesday, and sadly I need to say I still suffer every single day.

        I stumbled on this site by accident this morning while having an episode. And while it makes me sad to see that most women suffer from either or both diseases, it’s good that we can share and educate others about these diseases. And yes every story is mostly the same, but different as well. I won’t bore anyone, but it feels like I’m being held captive in my body and tortuted every single day by my own body. It seems the pain/ epidoes get worse as i get older.

        Sue please don’t wait. I was told I couldn’t have children. I did get pregnant in ’08 but had a miscarriage. It damn near destroyed me. It a stuff pill to swallow to be told you can’t get pregnant finally excepting it, to find out you are pregnant just to miscarry 3 months later. Anyway I did become pregnant again in ’09 a high risk pregnancy, but we made it through. I gave birth to my daughter in 2010 at the age of 30.

        She’ll be 7 next month, so even though the doctors tell us one thing, god has the last word on it at the end. I do want another child, but I think I get one miracle a lifetime lol. It’s just not happening for me and I’ve been trying for the last 3yr😢 Sue don’t you give up, please. Best of luck to all of you women who are suffering from either Endo, PCOS, or both. Something will help us, we just gotta keep strong and keep fighting to find a permanent solution. Ladies please don’t give up…..let’s keep fighting!!!! Miracles and blessings to us all!!

      • lianahoddinott

        I had my first laparoscopy yesterday and they found endometriosis. It’s a relief to finally have a diagnosis. Thank you to everyone who shared their experience and encouraged me to go and have it done. At times I thought I must be over reacting and that I am wasting everyone’s time by going in. My family however pushed me to go and do the surgery and thank goodness I did. All of the best to the rest of you!

    • Kelly Herron

      You just need a good gyne consultant. Are you still going through your GP? If yes then demand a referral into specialist clinics. I had bloods taken in my GP surgery which prompted a referral .. from that day my endorsed was diagnosed, surgery took it away but then it creeped back and I’m currently on an enforced menopause which has made my endo symptoms completely disappear.

      Be pushy, ask for what you need and stop suffering.

      Kind regards, Kelly

    • Dani

      I was told the only way is through exploratory surgery, I went through 10 years of pure hell before a doctor suspected it and referred me for exploratory surgery! Even then the stupid doctor said ” well I don’t think you have it and dr so and so does so I’ll I’ll take a look ect!” I said ” why are you so definitive that I don’t have it when you haven’t looked and I’ve been dying so sick and in pain for years and the medical field just can’t leave me like that!” When I awoke she says ” well ok Dr Moore was right we will schedule surgery!” But of course I know now from being in endo groups laser laps are useless, the gold standard for any chance at a normal life or relief is excision!

    • Melissa

      Sue, to answer your question yes only diagnosed through laparoscopic surgery. Mine was.😢

    • Jane

      Sue, I have endometriosis and was diagnosed when I was 29 thru a lap surgery. My doctor said it can only be formally diagnosed with the laparoscopic surgery. Plain film radiography, computed tomography (CT) scanning, and MRI are not sensitive for the diagnosis of endometriosis.

      However, there are symptoms (look it up online) that will make you think it is definitely endometriosis. If you have most of the symptoms, then, it’s probably endo. You do not have to wait until you get pregnant. Please get a second opinion if your doctor is not listening to you. There are other doctors who care and are more competent.

  15. Betsy

    I had a hysterectomy due to a huge cysts on one ovart then they doing another one smaller (softball sized) my ovaries and uterus were all removed along with my appendix because endometriosis was found all over… I am still having one symptom.. I call it “burning back” my lower back feels like it’s on fire.. it’s the only way I can describe it.. whether I sit stand or lay down this will not go away.. even my norco pain medicine doesn’t take it away.. is it possible that this is endometriosis somewhere the doctors didn’t check when they did my laparoscopic surgery? I am not asking because I think my doctor lacked in any way.. I am asking because I was told endometriosis could have spread to parts unknown. And if that’s the case I need to know so it could possibly be treated. My doctor says no hormones because he’s worried the endometriosis could spread.. I just would like an opinion not a diagnosis.. thank you

    • Hi Betsy, I just saw your comment and had to respond because what you described is so similar to my pain. I also experience “burning back”. I was recently diagnosed with endometriosis and we’re thinking that these episodes of fiery back pain are linked to my endo pain and severe cramping. Heat has helped me more than anything, and some stretches/yoga ease the worst of it. Would love to hear if you have found any other kinds of pain relief.

  16. Sarah

    I am 27 years old and I’m going for a laparoscopy in 2 weeks I am in agony about 1-2 week before my periods due i get Serious Achy legs and back to the point I have to lie in a really hot bath to ease me a sharp needle type pain as if something’s stuck in my womb and serious headaches and when my period comes I get serious heavy periods and the last one I was on for 20 days does this sound like endometriosis????

  17. Natasha

    I’ve read several articles about endometriosis and ovarian cysts in hopes to find some emotional relief with my struggle with the disease. This article I find very well written, not overly descriptive and most importantly, accurate. I’m 25 years old and I was diagnosed with extensive endometriosis two years ago. I suffered with horrendous periods for years and just assumed it was biological. I finally was referred to a specialist after being hospitalized with severe dismenorriagh. While seeing the specialist, an internal exam was done and there was no visible sign of endometriosis. But to be sure, I was advised to have an exploratory laparoscopy. Fast forwarding to my surgery, not only was as described “extensive” endometriosis found, but cysts both on my ovaries and not. My surgery was on August 18th, 2015. The recovery took about 3 months as there were a few complications afterwards, but once healed I felt relieved as I was assured by my doctors that it was unlikely for it to reoccur as he was extremely thorough. And in the event that it did, it would likely be a few years. Yet, that unfortunately has not been the case. I recently underwent another surgery this past November. I went without pain for 10 months before it came back and I suspected I had endometriosis again due to the horrific pain I was once again experiencing. As it turned out, not only did I have endo and cysts again, but I was also pregnant. My partner and I had been trying to conceive for 5 months prior to this last surgery. However due to adhesions fromy first surgery and a cyst blocking my Fallopian tube, it was eptopic. In pre-op just minutes before seeing the anesthesiologist was I tested for pregnancy via urine test, but it was apparently negative. Only after I awoke from surgery did I learn that I was pregnant. It was not only shocking, but devastating along with angering. My surgeon, who has now operated on me twice did multiple surgeries in one. Endometriosis removal, cystomectomy, cauterization, hydrotubation, D&C, they removed my one tube and half of my ovary. I would have thought that my surgery would have stopped the moment an eptopic pregnancy was evident and I would have been advised of the situation before they continued on with removing some of my insides. I’m still affected by it as it’s only been 3 months since, and I’m still enraged with knowing that my chances of having a family have vastly declined since. After this last surgery, I also experienced temporary atrophy, along with nasty post op infection for which I was hospitalized for 2 weeks on IV antibiotics 5 times a day. With all the antibiotics I was on, I also developed a UTI, BV infection, and a yeast infection at the same time which was horrendous. Finally just after Christmas I felt like the worst was over as I was finally out of the hospital and had minimal pain and started feeling normal again you could say, then my time of the month came or so I thought, but extremely heavy, and then I hemmoraged so severely I had to have a blood transfusion. Thankfully that has been the last Issue my body has gone through since the surgery, but I certainly still do not feel the same. Furthermore, I find myself thinking often that I’m kidding myself to think that this is the last of it. On the bright side, I have wonderful and thorough doctors that I see a few times a month. And since my surgery I have had monthly ultrasounds to make sure I’m healing properly. So far so good, but none the less it is still very frusterating. I see a fertility specialist this coming Wednesday to discuss my options and I am really hoping for some good news.

    I’d like to add that this is the first time I’ve commented on any public forum, and I am generally not one to share my personal info. So I apologize for the ramble, but the few who are close to me I find hard to talk about my experience with the disease, because they themselves are unable to relate. Hence my desicion to post about my experience with it on here to others who can relate.

    As someone who has only knowingly had this disease for a few short years, I’m finding that it’s already taken a significant toll on my life. I’m aware many woman have knowingly had the disease for many years and suffered significantly, and I would like to ask suggestions on coping mechanisms from dealing with the despressed and fear of being unable to have children, as know I’m not alone in that.

    To every woman suffering with this disease, my heart truly does go out to you. I’m sure all of us wish that it was better understood and there was more support in place for the hardships that come along with it. It is indeed a seemingly lonely, depressing and misunderstood disease that truly lessens our qualitys of life significantly.

    Thank you for taking the time to read this. If any of you have questions about surgeries as I see some of you are considering having it, feel free to ask me and I will do my best to answer with my knowledge and experience. I feel the need to add that my complications after surgeries is not a common occurrence from what I’m aware of, and that after recovering from my first surgery until reoccursnce, my quality of life did improve significantly.

    • Melissa

      I had 6 kids with Endometriosis and my sister cannot have any. Every woman in my family has it and had lost children. Thank you for sharing. I will be praying for you all. God bless.😚

    • Melissa

      To everyone here my name is Melissa. I am a 37 year old mother of 6 and suffer Endometriosis. My story is somewhere on this page. I’m writing to you again not only to let you know there’s hope in Jesus. He gave me 6 precious children with this condition. Also, I can’t stress to enough the benefits of ” Endovan”. Please everyone research Endovan especially if you want to reverse symptoms, lose weight, feel great, and get pregnant. My last baby was conceived on Endovan ( his twin didn’t make it sadly). He is one now. Please, please listen! What do you have to lose? It worked for me. Read the stories. Go to Endovan . God bless. Jesus is our ultimate healer. Have faith. I’m a miracle and so are you. Remember Endovan. I don’t sell it, just tried it! It works or money back cause it’s a little spendy but worth every penny!

  18. Sarah

    Hi my names Sarah and I’m 27 years old. I go for a laparoscopy in 2 weeks time and I’m quite scared :(. My first ever period was great and then my second I was on 18 days in total and ever since I have been getting very heavy long periods with pain that’s horrendous but I’ve noticed before I am due on my period I get pains in my legs that ache like toothache a sharp stabbing pain in my womb that feels like it’s clipped onto another organ along with serious migraine that bad I’m sick my lower back hurts all the time and sometimes I get a tugging feeling in my groin 😦 does this sound like endometriosis as I’m starting to think will it be worth me going for a laparoscopy??? And advice would be appreciated

    • jess

      That is a possibility. The laparoscopy will answer it all and if it is endometriosis they can clear some of it up while in there. I have 2 laproscopic surgeries to clear up mine with in a 4 yr span.

    • monekanicholson991@gmail.com

      Hey how u doing?Think so go to doctor see what’s going on with body.I was having problems with mine alot finally found out had Endometriosis stage 4 but with God glad know what’s going

  19. Paula Harmon

    I had weird experience with my period ,s hurt so bad and then all of studded it stop for 1are almost 2years and when it came back it was worse then ever blood clots heavy tampons couldn’t hold it I just lose my job I felt very bad

  20. EL

    I am terrified of doctors so I do not have an official diagnosis but so many of these symptoms sound like me. I’ve had painful periods since I started at 12 years old (I’m 28 now). I get charlie horse feeling cramps randomly in the rectum and along the left side of my vaginal wall. They can hurt for a few moments or hours! They will even wake me up at night and it is misery. Recently my back and hip on the left side hurt and almost feel like torn muscles burning. I can barely make a bowel movement when I’m ovulating or on my period, the pain is too much to push through. It hurts to sit down, feels like stabbing pains in my pelvis. Please someone advice if this sounds like endometriosis?! I don’t want to go to a doctor unless this sounds like it. My insurance in minimal so that makes it all even worse thinking I’m going to go into debt. Thanks for any help.

    • Ashley Garcia

      This does sound like endo or even cycsts. I have both I was up all night because my legs had this asleep feeling. I am in pain with cramping and aching like 70 percent of everyday with pson ranging from 5 on the Spain scale to a 13. It’d so frustrating! I hope you find answers. Even though there is no cure
      . I found food is responsible for a lot of my flare ups. I can’t eat red meat or drink alcohol or eat beans or anything they hives me gas. It causes excruciating pain

    • Carrie

      Yes. Same symptoms as me. I lost right ovary… left tube… had tons of endo…. and had my appendix removed at my laparoscopy last week. Im so upset a week later because everything that hurt now hurts worse than ever. Call me impatient i guess. It takes at least 12 weeks to feel better from excision… but im so tired of hurting in my back im severely depressed that i didnt get any instant relief from the surgery. Please go to a gyn dr. …. i tried to figure out what was wrong with me for 3 years. .. because it took so long to find a good gyn dr to look into my pain…. i really am gonna have a long recovery… if i have one. So so depressed

  21. jess

    I have suffered from endometriosis as well as ovarian cysts for the past 4 yrs. My doctor said the absolute permanent relief of pain would be for me to have a hysterectomy but because I still wanted children she (I believe) did all she could do to avoid that. I began with just the simple pain management but didnt like the way the drugs made feel. I had laparoscopic surgery to clear some of it up and then went on to Lupron injections which is considered a chemical menopause. That alone shrunk down my cysts and made my pain non existent. There were hot flash and mood swings but i was also prescribed
    estrogen to minimize those symptoms. I finally became pregnant in january 2015 but shortly after miscarried. I then went on birth control pills to stop my cycles for a few konths as i still wanted to try and concieve. Dec. 2016 i had to have an emergency surgery due to ovarian torsion where they again cleared up some of my endometriosis. I am now 11wks pregnant..hoping to go all the way with this pregnancy so i can finally have that hysterectomy…At 28 it’s starting to take a toll on me.

  22. Melissa

    Ladies I just want to tell you I am so with you on this. I have had Endometriosis for about 6 years atleast that I know of. My story is very long, so I will try to keep it short. My name d Melissa and I am a 37 year old married mother of 6. At age 34 I was set up to have a hysterectomy, but my insurance denied me and wanted me to go to mental health because to them it was ” all in my head”. Month after month for years I’ve gone into ER nearly bleeding to death. The pain of Endometriosis is so unbearable I cry feeling like I’m repeatedly in labor over and over. The sciatic pain, hip pain, body aches, headaches, back pain, horrifying cramps, etc. Absolute nightmare. Not to mention your family thinking you are nuts or a crybaby. Major physical and emotional damage women suffer and trying to explain it just sucks. I finally got tired of it and prayed. Was was to an herbal supplement called Endovan. It was a miracle. I got off all prescription meds. I became pregnant with twins on the first bottle and lost one soon after in ER when I started bleeding. I had prayed for twins. Of course we were devastated. I was sent to Maternal Fetal medicine for complicated pregnancy and being over 35 ( high risk). Constant monitoring. February 8th 2016, I delivered a beautiful little boy Elijah. Thank God I didn’t have that hysterectomy. I am currently still breastfeeding and just tore my rotator cuff. I sit here in no medication suffering to put my children first. Today I am suffering a really bad Endometriosis period. What you all described as labor. Yep! I feel like I’m dying. I’m debating ER again but can’t take any meds as the baby is still feeding from me. Also, don’t forget the tendonitis and calcification in my rotator cuff, fibromyalgia, and Lupus. Ugh…nightmare! Ladies I feel your pain. I wanted to let you know as soon as I can I will get back on Endovan. It reverses these symptoms and that of PCOS and other things and helps infertility. If you want relief please look it up. You lose weight on it as well. All natural supplement. Be blessed ladies. Prayers for you. My heart goes out to you.💋❤

  23. Tay

    I’m only 19 but I think I’ve been suffering from this I’m currently on day 1 of my period and I can’t tell you the pain I’m experiencing I have hip pain that shoots in my leg my back is in terrible pain I have right inner vaginal pain. The head aches are keeping from sleeping my family had thought this whole time I hurt my back but then I find out about this. I can’t get into the gynno till march 30th and even then I feeel like they won’t do much to help me

    • Janie

      Hi there. I am 24. I have endometriosis. I still haven’t exactly found a solution yet. But my doctor proscribed me a shot. I have to take it every three months… and I think that I missed several periods because of it. Thank God. My luck didn’t extend into this month, but the doc did say that bleeding inbetween the first several shots can happen but that it can eventually eliminate periods (while still having the chance of having kids when the meds cycle out of my system.) Nice thing is that my insurance totally covered it.

      The shot is called medroxyprogesterone acetate injectable suspension, USP 150 mg per mL. Something worth asking your doctor about.

      Also, if one doctor isn’t the right fit, try another. Keep on going. It sucks. But eventually I was able to successfully transition away from a doctor (who w/ every visit would make me take urine tests–to make sure that I wasn’t pregnant because apparently my word isn’t enough and apparently teenagers are (or were) lawless sex fiends–to a doctor who would listen, be understanding, and did everything within her skills wheelhouse to give me a diagnosis. To give me a diagnosis there was a small surgery. Endometriosis doesn’t show up in a ultrasound.

      The shot is a new thing that I am trying. Next thing on my list is too try to change my diet. And maybe try Evening Rose Oil capsules…. just saw that bit while I was reading thru the comment section.

      If one doctor can’t help you. Try another. And then another. Some doctors aren’t the right fit. But things can be done. Its not perfect. Nor it is certain or foolproof. And God knows that I wish that I had access to morphine during my really bad days (800 mg motrin REALLY doesn’t do the trick for me, sometimes it works, sometimes it doesn’t) But the nice thing about this day and age is that technical and medical advancements happen all the time. Things have slightly changed since the last time that I visited my OBGYN, ie. the shot. And the maybe hopeful elimination of my periods for several years. And hopefully during those several yrs, medical advancements will have been made. And hopefully I will be able to find a way to work even on those

  24. Taylor

    This was a very well written article.
    I suffer with endometriosis. It took about 3 years to come to a conclusive diagnosis, they tested me for gluten intolerance, lactose intolerance, and a whole bunch of other things. I had chronic pain daily thinking it was from foods, so I ate very little and lost a lot of weight. I had an ultrasound and they found I had excess fluids in my uterus, so they did a laparoscopy and found I had endometriosis. They removed some of the fluid and scarring on my uterus and I was okay for about 5-6 years.
    But now I am laying in SEVERE period pain and terrified that it’s the endometriosis coming back to haunt me again.
    Hopefully they can find a cure so women don’t have to suffer anymore.

  25. Shelby

    I have had for about 3 yrs now this on going pain in my lower abdomen.
    The only way to explain it is a serrated knife scraping my uterus it feels that bad and it will hit me all at once for about 3 weeks of every month my legs ache my back is hurting so bad(feels like back labor) when I try to sleep the pain is horrible I even have been having to sleep setting up I’ve been to the hospital countless times they always come up with some excuses.. Mid-Cycle ovulation, or it’s your period, and I never start my period I have the nexplanon so my periods are pretty much gone unless I’m around someone on theirs then we sync together
    Past 2 years I’ve maybe had 5-6 periods. But it’s not like blood it’s a pasty brownish/red color and I dong even need a pad or tampon just pee and wipe and its there… the Drs won’t listen to me idk what to do!
    I’ve told them I need checked for Endometriosis but they ignore me😭 Like I can’t even play with my kids cause I’m always hurting and to touch my stomach or put pressure on it makes me cry…
    could it be Endometriosis?
    I’m so scared cause for one they won’t listen but not only that I want more kids

    • Tara

      You ABSOLUTELY need to see a specialist.
      I have NO IDEA why our health care is so messed up!! It took me 2 years!! JUST TO SEE A SPECIALIST everyone had excuses or try this BC try this shot.. but no one really wanted to help me.
      or there were insurance issues. The Dr that. Oils help didn’t take my insurance.. so I would switch, then I would have to wait for the insurance to kick in. Then 2 weeks to see the dr. Then 2 weeks for a rA referral to see a specialist
      FINALKY I FOUND AN AMAZING DR
      Names Dr. Paul Buzad.
      I urge you to look him up, and try and make an apt with him. I had my surgery 11 days ago, and he didn’t make me jump through hoops!!
      LOOK HIM UP
      Try and make An apt with him

  26. Alesia

    I am 29 years old and I’m preparing to have a total hysterectomy in May. They also are taking my ovaries and cervix. I have tried every birth control known to man and Lupron depot injections. I was diagnosed when I was 16 and I am ready to be removed from this pain. I am excited to be away from morphine and I am even more excited about regaining my freedom.

  27. I do have acute back pain that is unbearable. I have been diagnosed with stage 4 and suffered for years until my insurance changed and I was forced to see another Dr and she took the time and finally figured it out. I feel a pulling sensation in my lower back that does not allow me to stand up straight and it last about 7-10 days and happens about 1 or 2 times a year. This time I had to cancel my cruise I planned for months and the boat leaves tomorrow and I am sitting on a heating pad looking at my packed suitcase. I am glad I purchased the travel protection bc I will get all my money back after a couple weeks and paperwork to prove I’m not up to part (irritating) but necessary to get my money. Any last minute things I should try so I can maybe still go I welcome all suggestions.
    Thanks for listening.
    Sincerely,
    Pain w endometriosis ruined my trip

  28. Lauren

    Ive been ongoing with heavy painful periods since i had my son last may and i had retained placenta for 2 weeks. My son had anencephaly so he was still born. I had 2 D and Cs. One manual and one operation. Since then ive been in agonising pain and really heavy bleeding. Im worried the infection has caused me to have endo?? Ive been fertility clinic as we have been trying to conceive for nearly a year and nothing. Ive had 3 previous pregnancies only one child out of it. Shes 7. Im getting no answers about whats going on with my body. Each month is a struggle with stress of not getting pregnant and the pain im in constantly. Can you help me to as why? Thank you

  29. Antonia ahmad

    I am 57 years old have had endometriosis for years work as a cook it involves a lot of lifting running all day long back and forth I had my last period in Jan 2017 I supplement with sea buck thorn oil omega 7 for uterine health however as of the past two days I am experiencing twinning on and off in the groun in addition to my perpetual siactia and neuroma of the foot that the dr tells me is coming from the sciatic nerve into the pelvic region and help u can offer will be appreciated thank u

  30. Brittany Dispensa

    I think this is what I am experiencing…it feels like a knife is jabbing up into my vagina & into my pelvic area even my rectum & it just keeps stabbing….even when the sharp stabbing stops I feel sore as if I have been punched in the stomach & pelvic area repeatedly. It takes my breath & I use a heating pad ALOT but even it can’t completely ease the pain. It is not constant but can b from 2 to 3 stabs to hours & hours….not to mention my body temperature slightly rises due to the pain & it is effecting my heart rate & BP….basically it’s Hell.

  31. Karen Rahn

    I have a sharp pain in my right side two times within a week and a half and sharper the pain gets I feel like I am going to pass out.

  32. BRITTNEY

    I HAVENT BEEN DIAGNOSED WITH ENDOMETRIOSIS, BUT I AM HERE ASKING FOR ANSWERS I HAVE BEEN TO EVERY DOCTOR AND HOSPITAL I CAN THINK OF AND THEY ALL JUST SEND ME AWAY WITH SOME PAIN PILLS AND ANTIBIOTICS BUT THE PAIN NEVER GOES AWAY I AM ALWAYS HURTING IN MY LOWER BACK AND MY ABDOMINAL, I FEEL LIKE SOMEONE IS SCRAPING MY INSIDES RIGHT ABOVE MY VAGINA, AND I FEEL ALOT OF PRESSURE ON MY OVAREA WHEN I SIT DOWN IT SENDS PAIN SHOOTING DOWN MY LEGS AND HIP IT HURTS SO BAD AND I HAVE BEEN BLEEDING FOR ABOUT 6 MONTHS NOW AND IT HASNT LET UP AT ALL. HAS ANYONE ELSE EVER FELT LIKE THIS BEFORE I FEEL LIKE IT IS DRAINING ME I HAVE NO ENERGY LEFT WHAT SO EVER IT HURTS TO WALK AND STAND FOR A LONG PERIOD OF TIME AND I AM ALWAYS SO BLOATED MY STOMACH IS ALWAYS SWOLLEN LIKE I AM ABOUT 5 MONTHS PREGNANT. PLEASE ANYONE HELPL ME

  33. Lisa

    I’ve had painful and heavy flow periods for almost all my life, I am 27 years old now and although the flow has decreased I still get the pains. What I have noticed is a pattern, I get these needle pains on my lower right side or middle upper side of my stomach. I also get it when not on my period. I’ve gotten tested, but nothing. I wondered if it could be Endometriosis? Could you give me some advice on it? I can’t lay on my side I will feel nauseous or get needle pain or feel pressure.

  34. Khanyisile Noruwana

    Hi iam khanyisile I have this symptoms of back pain leg hip BT my problem I don’t go to period because I am using injection so my problem I don’t understand what going or it will decrease the chance of having baby iam confused plz help

  35. Laura

    This is me to. I had the pain from the age of 13 when i first started getting my periods with no answers intell i was 17 almost 18 i have had two surgerys and im still in pain the firat two to three days of my period are hell as i wright this im in a ball trying to get the pain to go away it’s hard. Even more so when your other half ( boyfriend ) does not understand that sex hurts. Im at a loss for what to do im really thinking about another surgery and having them just take everything out but im not sure

  36. Jaydene

    Hey I’m 25 I’ve been having this leg,ovary and lower back pain for more then 2years getting up in the morning is even work the pain hits me like crazy and it’s all on my right side sometimes my leg don’t want to move I don’t know what this is but I’m getting scared now …

    • Carrie

      Sounds like my symptoms. I had a lot of endo… lost right ovary… left tube… had my appendix almost burst during surgery and had it taken out. …. get to a gyn please

  37. Elizabeth

    I dont know what this is i had a pain that went across the left side of my hrad then .y legs and arms gave out after that i started having problems with a bad smel in my peorid then i started having bacteria in my vagina every month i had this they put me on flagual my body was already having muscle ache really bad ones my nerves in my legs got bad i started sweating or havi g bad chil my ears srated to ring with tbis i could sometirs tazte it in my mouth my eyesite is bad im always feel faint i have hit tbe ground from tbis ireally need help when i take my meds it makes it 10 times worst im in pain every day i stop taking my meds to see if i would feel better not teally but i dont hurt as bad but its still tnere all day it starts around 10am and stops around 7pm help me

  38. Jamila Johnson

    I just got my laparoscopy operation two days ago and I wished I knew this was a treatment option many years ago. For years I was told by doctors to just take an increase of Motrin. But at some point you are just drugging yourself because my tolerance for the pain was so low I had to over medicate just to get through the day of school or work. I was fortunate to get pregnant twice but it took a lot of planning. One pregnancy was successful and he’s now 14. The same age I was when I began getting terrible endometrial pain unknowingly. So as the years went by I just accepted this was My fate as unfair as it made me feel. Fast forward many years I tried herbs, acupuncture, massage, chiropractic treatment- nothing worked. Not even a vegetarian diet helped. So at age 38 my doctor informed me about laparoscopy and ablation. I chose to put it off why I don’t know, but two years later I had it done. I’m looking forward to the relief. I can’t speak of it now, but I am hopeful that it will give me many years of needed physical relief and emotional relief. I cannot stress enough that you have to advocate for yourself. If it is unbearable for you to move, work, or use the bathroom, then chances are you have it and it’s not regular menstrual pain. It’s abnormal to go through this monthly in a vicious cycle of widespread pain throughout your body. I listened to my body and followed my instinct instead of ignore this silent illness. Infections and genetics are common causes of endometriosis, so it is not a thing you can do but perhaps seek an experts treatment. Do yourself a favor and get the laparoscopy performed to rule it out, but based on what I’m reading most women probably have something going on whether it be cysts, fibroids, polyps, endometriosis scar tissue, POCM. If you can afford it get it done. Spread the word tell someone. My nearly twenty five years of suffering were unnecessary.

  39. Megan dodd

    In August of 2016 I had a baby the doctor ended up leaving some of the placenta inside me and ended up doubled over in pain well I went and had a d &c procedure done and after that my pain in my stomach was worse they did a scope amd colonoscopy trying to figure put what was wrong I had adhesions in my liver well my pain gets worse and worse I have shooting pains that have me doubled over my period last from a month to two months and I have tissue come out of me continuously now I have cyst forming on my ovaries my Dr blames it on my birth control but the problems started way before the birth control I need help any advice

  40. Ash

    Am 42 years old with 3 kids and was diagnosed when I was 35. The first time I experienced it I was awaken by extreme abdominal pain to the point I passed out and ended up in the ER.
    Every month since then the pain and my symptoms are different. During ovulation I experience cramps like symptoms then 10 days leading up to my period is the worst. I suffer from fatigue, extreme back pain only when am sleeping at nights and getting out of bed in the morning. Sometimes high appetite, leg pain in the upper thigh area and headache. Every month it’s different and gets worst. Sex can be very painful also. When I actually have my period I hardly bleed and only for 2 days and after my period I get this annoying pain that just comes and goes on my left side below my stomach. It’s very frustrating and am grateful to have such understanding family cause during that time on days my body feels like I’ve been run over by a truck so I stay in bed. I exercise daily try to eat healthy but it helps as I lost some weight also. It is a disease that I just don’t understand and my doctor said it’s only gonna get worst as I get older and it is.

  41. Karin

    45 year old, 2 kids (age 24 and 22) but I’ve had endometriosis since i was a teenager….nothing touches my pain (constant pain every day in my back, left hip and lower abdomen)…endo is on left side but scans have shown cysts on my right ovary and in 2012 they found a fibroid in my uterus….I bleed for 2 weeks straight, stop for 2 weeks then bleed for 30+ days stop for 2 weeks and start the whole thing over again….I guess I’m looking for advice.,..I don’t have health insurance so I can’t go to the doctor (most around here won’t even talk to you if you don’t have insurance). I have no family history as all the females (besides myself) on my moms side all had hysterectomies before age 35…I figured menopause would kick in soon but here lately, the last 4-5 months, the bleeding is getting worse and more painful. I am tired of being in pain every day

    • Jamila Johnson

      Have you tried your state health insurance? If you do enroll, I’d look immediately seek a endometriosis specialists did possibly getting a laparoscopic procedure, ablation, or a hysterectomy. I know how you feel. It seems like it never ends but there is relief out here. I wished I had looked into it sooner.

  42. Cathy

    My daughters has been dealing with horrible pains throughout the month prior to her period and just as bad for the first three days of her period. A doctor finally told us he is pretty sure this is what she has and put her on birth control which helped at first but now month 4 and the pains before her period are back. She has been dealing with this for years and she just turned 16 and ends up missing a lot of school and going when she just can’t miss anymore and suffering all day long. Extra strength Tylenol and Ibuprophen sometimes help but take a while before they start to work. I’m trying to get her back for more tests and just found out that my doctor is booked till Christmas so I’m hoping they get her into see a gynec. soon. I’d hate for her to have a hysterectomy since she is so young. I am so frustrated and worried about this being something else but all of the symptoms point to this and didn’t start till her first period at the young age of 10.

    • Jane

      Have you tried changing their diets? Going gluten free and vegetarian diet helped me a lot. I’m pretty sure going completely vegan will help me a lot more but i’m not ready to give up meat completely yet. I try to avoid red meat though. Also, I’ve been taking Endovan for 7 months now. It helped with all the pain associated with endo like lower back, hip and leg pain. It’s a little expensive but for me, it’s worth it. I’m not completely pain free yet but it’s way better now and I only have pain (milder pain than before) during the first 3 days of period. It’s tolerable pain. I take pain meds only during my period. I can still go to work also unlike before that I have to miss usually the first 2-3 days of work.

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Endohope

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

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