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.

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

  1. Tannya

    Hello, well im really happy that Im not alone. I have suffer for the past 13years. I have gone doctor after doctor, only to be sent home with ibuprofen 800mg, one time vicodin, and a bills of debts! I had pain that has cause me to strain relationships with family and co-workers because they have never heard of someone with this “issue”. I tried doing everything possible lose weight, eat differently, drink more water, medicines, WHAT ELSE should I do!? Im so tired, when I had health insurance nothing was done, now that I don’t have it. Im getting worst, and need it to get help once again. I had a very embarrassing episode on a vacation just days ago. Where the pain just ran down my legs and I felt light and almost pass out! I was actually checking out at the grocery store, when this happen. I was with family and friends, Only my friend was right next to me when I gave her my credit card because I felt it coming. I grabbed the Tylenol and ask the cashier where was a water fountain. Poor guy looked at me like he saw my expression, I couldn’t tell anymore my facial expression. I was going down. Everyone was looking at me, :( my friend caught me, and I was yelping in pain because I didn’t want to scream. It was horrible. 10 mins later. I was fine…. I was happy because I had 4 more days of vacation and I didn’t want to be miserable…….Thank you for acknowledging that this is an issue women out there are going through.

    • Sam

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

    • Sam

      No, I haven’t. I want to (though I don’t know if I have endometriosis or not). I’ve heard a lot of people say it helped them with whatever they needed help with.

      • nikki

        The only way to know for certain is to have surgery, my obgyn went in a saw I was covered in endometriosis. So bad, it actually pushed my left ovary up against my stomach. I could feel a nickel size knot just by looking and rubbing that area. But it wasn’t a knot, it was my left ovary, which doesn’t work any longer. I had battled this pain for many years with drs just excusing it as “bad periods” or cramping. And finally my latest obgyn (and last one) suggested it may be endometriosis. I had heard of it but was not familiar with specifics. Btw, I was only 31, no children, I’m 33 now and feel it’s coming back. But, honestly, after having surgery I was in awwww. Asking is this what a normal period feels like? And some woman complain about a little cramping. I want to scream….Seriously? U dont know painful periods, painful sex, painful in between periods. And u wanna bitch about a “little” cramping. And my periods are only 3 days now. Sometimes 2 1/2 days. I hope this helps you or anyone else suffering from this.

  2. Milan

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

  3. Stacy

    I’ve suffered with this disease for 14 years and was diagnosed at least 10 times with everything under the sun. Until I finally demanded that I had the laporoscopy after doing my own research on all the symptoms I’ve been coping with. It’s now been a little over a year since the surgery and I am back to having no insurance. I am in just as much pain if not more than I was a year ago. I was told when I had the surgery the adhesions were on my both ovaries, my bladder, bowels, and my right ovary had attached itself to my organs. It has also caused my uterus to tilt. I am about to be 27 years and I am not sure if I can even have a child. Sometimes I feel like just giving up. I have lost several jobs because of this silent disease and it really takes an emotional toll on a persons life. Thank you for listening I’m so glad I have found this site with women who can relate to exactly what I’m going through. I’m here for you all as well if you ever need someone to vent too <3

    • Milan

      I get relief with herbal medicine. Ayurvedic herbal medicine. A lot of yoga studios have an Ayurvedic practitioner. Can get herbs from them. And there are no side effects. It improves your overall health and immunity. I haven’t had a cough/cold in 2 years coz I’ve been taking Ayurveda on and off. And it’s helping with endo

      • Stacy

        Thanks so much !! I will def look into that. Anything to find some relief I am willing to give a go.

  4. Where can u purchase endovan??

    • Milan

      On their website at endovan.com. If u google endovan you will find other blogs on it where people have found relief with it. There are no side effects and most people feel relief within 2-4 months so it’s worth a try. I just purchased 2 months and keep ur empty bottles, if it doesn’t work you can return with full refund. After hearing everyone’s stories, laproscopic surgeries and hysterectomies are not the solution. People with endo are still suffering after these surgeries so might as well try alternative methods. Also warm castor oil packs help to shrink scar tissue

      • Beth

        Hiya,

        After years of going back and forth to the doctors they eventually referred me about a month ago. However, the waiting list for an appointment is 30 weeks. I just can’t cope with the pain I’m getting all month. On the second day of my period this week I woke up and was climbing the walls in agony. I couldn’t sit, stand or do anything until paramols and buscopan tablets kicked in. I feel in pain all the time, shattered and don’t know what to do until I get my appointment.
        Has anyone gone private for their first appointment or is it not worth it because if they recommend a laparoscopy I couldn’t afford it to be done privately. Any advice is welcomed I just don’t know how to cope anymore.
        Thanks,

        Beth x

  5. Denise

    I am 50 years old and recently diagnosed with endometriosis. The pain i have felt in the past has only to increase this last month. I feel as if i am being repeatedly stabbed with a knife all the way through to my back. It starts as a itchy or tingeling pain and then I know it is only going to get worse from there. I have tenderness in my lower abdomen and pelvis all of the time for the last month. I have fatigue and the pain in my back and hips feels as if my bones are being crushed. I have been in ER twice and Urgent Care once in the last month. First trip to ER they gave 3 doses of Morphone with no pain relief. They then gave Dilaudid which finally relieved the pain. I have been on Oxycodone for a month and progesterone while awaiting sugery.
    The second trip to ER i went in after my doctor wanted me to go off the progesterone to have a “normal” period before my DNC biopsy. One day off the progesterone I was on Oxy for pain again. 2 days off Oxy wasnt relieving the pain which sent me to the ER for pain management. After 4 doses of Dilaudid the fifth does was a double dose of Dilaudid along with 2 Oxy trying to get the pain under control. What a cocktail that was! I honestly though they had OD’d me in ER. I still was not able to get complete relief and ended up back on Progesteron again. This has helped me to cope until my surgery for a complete hysterectomy this week.
    The pain has only increased over time and the length of time the pain has lasted has increased. I am fortunate enough to be self employed so that i am able to cope somewhat with the pain and fatigue. I was diagnosed in ER and Urgent Care with menstrual cramps. Please girls see a gynocologist if you suspect endometriosos. See 2 or 3 until you get answers. The pain is not normal and you shouldnt have to live with it for so long with no diagnosis and no help. There are things that can help you.
    I must say i am excited for my surgery this week!

  6. Meredith

    Hi ladies, so sorry to read about the tough times you all have been through! My name is Meredith and I’m 33 years old. My Dad is a retired OB/GYN so I thought surely I was getting the best care & all they could do through the years. I had my first endo surgery when I was 14, lost an ovary at 17, have had multiple surgeries since with my most recent last summer (2013). I’m so tired of being in such pain but I really feel like I’ve tried everything! I’ve done acupuncture, Reiki, craniosacral therapy, and of course all Western medicine has to offer. They’ve put me through medically induced menopause, constant pills, etc. Do any of you have any other ideas for me? I’m running out of them and so are my docs. He even seems weird about pain meds now. Maybe bc it’s been so many years and he fears tolerance and addiction. I’m just in so much pain, I’m terrified! Help!!

    • Im 28. Was diagnosed with endometriosis, had my operation last june 26th 2014. Its my 2 weeks now. There are times i walk fine but very limited, but today is hell. I coudnt even sit. Both my legs are stuck, when i move it the adhesion hurts big time. Im afraid something went wrong or just part of post opt. Im always alone for 7 hours at home, screaming is my only friend at the moment. I discovered this december 2013, but my doc only gave me pain killers and sucking the ( choco cysts) every month. Very depressing ,as i had to give up a good job.

    • Sofia

      I am 23 years old, diagnosed with endometriosis after a laparoscopy this summer. I was having daily pain that would get worse around the time of my period for 3 months. My periods were never heavy or irregular. The terrible pain is what got me going to the ER and different doctors. I also had many ovarian cysts which could possibly be PCOS. But anyways, I was still experiencing pain daily soon after the surgery. Once returning to work the pain began to get worse again. I’m guessing because my work is physically demanding (always walking and occasional lifting) which is why I am on a desperate hunt for a new low impact job. I found relief with Native Remedies Endo-Ex. After only a couple days I had the first day in a very long time where I felt like myself: comfort while walking and restored energy.
      Although of course there are still bad days, the number of good days outweighs the bad. Having endometriosis demands one to become more emotionally and mentally strong. Mantras helped me a lot with this transition of my life. Take a few minutes during a time where you are relaxed to write down some phrases that fill you with hope and happiness. “I am not Endometriosis. I am …. I am funny, thoughtful, …etc”. “Pain is just but another sensation one feels during the day”. Mindfulness is also a great practice worth looking into.
      I am also on a bountiful vitamin regimen:
      Selenium (2 pills)
      Beta Carotene (2 pills)
      Fish oils (3 pills)
      Vitamin E (1 pill)
      Vitamin C (1 pill)
      B-Complex (1 pill)
      Cal-Mag-Zinc (3 pills at bedtime)
      Melatonin (1 pill at bedtime)
      Serotonic (5htp for mood)

      For pain (including the back, hip, and leg pain) I take Aleve. I have found that two pills of Aleve helps so much more than Advil (ibuprofen)! And I am prescribed Vicodin which I take as needed for additional comfort. And I am on the birth control Lo-Loestrin which I found to hep more than a progestin-only pill.

  7. Paige

    Hello everyone. I haven’t been on here in awhile because i’ve been trying to enjoy my summer and actually have been. The pain I had has been reduced after my first surgery and continous birth control but as i mentioned, I still felt like i wasn’t completely cured of pain and seeked out a second opinion. The doctor assured me my first surgery was only for diagnostic purposes and to be completely healed, she wanted me to let her do a more thorough surgery. She is having me take injections for 7 weeks or until my body starts having hot flashes. From there, she said it is safe to do a thorough surgery and I guess afterwards I would continue using lupron. Today will be my third injection. I’ve been letting my sister do them as she is a vet technician and is familiar with needles. So far I’ve had nausea/stomach aches from the injections but I guess it will all be worth it and hopefully I can stick with it for as long as I need to. As of now, surgery is scheduled for september 4. My only problem with the injections is finding the perfect time to do them, especially since i rely on my sister to give me them. They say to take it every time at the same day, but with work, and then other social events, its hard to plan the perfect time. Who wants to carry needles and all in their purse? not me :( Does anyone have any experience/advice with giving themselves their own injections/the perfect time to do them?

    • Paula

      Paige,

      I did one shot for a month & am supposed to go to the dr on Tuesday to discuss doing the 3 month. I have been worse so I’m not going to do another. I was thinking I should bc one month isn’t long to see results but I’ve had terrible aching pain all over worse than usual. I haven’t had night sweats or hot flashes though so not really sure if I’m in menopause…. I didn’t know that they had shorter shots. How long is it supposed to take to work?

      • paige

        she said 7 weeks. i can’t see myself sticking with the lupron after surgery, especially without addback. its my 10th day and like you said, so much achiness.

  8. paige

    Update on the lupron- I started it on july 7th. today is july 17th. in the very first couple of days i was very tired and had no energy. Now the issue is aching, especially in my legs. I work out everyday at the gym or go for runs outside and today i was limping home. as i type my legs feel like they have a charley horse, they are tight and painful and extremely achey. i stretched prior and it was only a 10 minute run. its something i’m used to but on lupron i feel like i’m exercising for the first time. It makes me extremely sad to know that my fitness routine is in jeopardy now that I have started the lupron. Anyone else experience this? What else can I expect? :(

    • Paula

      Paige
      Are u going to stop soon? I only ask bc there have been so many posts about Lupron causing permanent damage & people still being in pain after they stop treatment. Just be careful!! Good luck:). I have been prescribed vaginal Valium suppositories now to see if that’ll stop my pelvic floor spasms. Hopefully I can sit better anyway…
      Paula

      • Paige

        No I’m trying to be a trooper. I guess it’s because my sisters friend is all better and I want that to be me. I’m already too far in now but trust me if this continues I will be calling the doctor.

      • Paige

        And thank you for your well wishes. I will keep whoever wants to know updated on here :) I’m hoping once I’m pain free to spread more awareness on how to get help.

  9. I have had endo for around 3 years I would say. The pain in my legs, my pelvic area even when I’m not on my period is unbearable. I am emotional constantly, being able to burst into tears at the drop of a hat. It’s awful. I am due to have a laparoscopy soon and am hoping that will help. I am constantly weak and tired. Just want it to go away.

  10. Paula

    Hello! my name is Paula, I have diffuse adenomysis, fibroids, cyst and possible endometresis. I’ve been on birth control pills, lupon shots. I even had uterine fibroid embolization. My uterus is 14mm, I have constant pain daily. My hysterectomy (partial) is scheduled for August 2014. I’m so depressed. I take motrin 800 and Norco ATC. I really don’t want to have surgery but it is the only choice. Just thought I would share my story

  11. Nichola

    Firstly I would like to thank you for making this page available.Sometimes with all the help from family and friends, sharing something like this with people who experience the same thing can be comforting – Just knowing that you are not alone. A few years back I started with pain in my lower abdomen and thighs. After many trips to see my GP I was told I was suffering with ‘bad periods’ over the last 3 years it got worse. 2 Years ago I was taken to A&E where I was examined internally and told that my bowel was full. My husband was not happy with the diagnosis as I struggled day in and day out. Eventually I changed my GP who was previously a gyny, Upon giving him all the details of my symptoms he told me straight away that it was Endometriosis. Last year I had Laproscapy surgery where they lasered away the adhesion’s, I got an infection and was rushed back in to have antibiotics through a drip. 4 weeks later was my wedding day and I was still swollen and in pain. After speaking with my GP he told me that sometimes the laser treatment can cause more adhesions. I had another appointment with the Gyny 4 weeks ago and they are going to cut it away this time and also have the bowel surgeon have a look to see if the adhesions have caused my bowel to stick to anything. I have been signed off work, I cannot go out, I walked for 5 minutes to my local shop this morning and had pains as though I was getting a period – One of which I have not had for 5 months now. I really hope this surgery helps, I cannot cope with how I feel, I sleep so much and constantly feel tired, emotional and sick to the back teeth of taking pain killers. 14th August is my surgery date…. LETS DO THIS!!

  12. i’ve suffered with Endo since 2008. been through two surgeries (most recent was 6/5/14). My last surgery, my doctor said my endo was so angry and had taken over and she had never seen such a case before. I have gone to the ER 4 times in the last 6 months. i have great great great doctors and insurance and am so lucky that they know what i have, understand it and do everything they can to help. after my surgery i was offered Lupron, but refused it. i am planning on having my second child really soon, and after my second child, will ask to have my uterus removed/keep at least one ovary. it seems to be the only solution to my issue. right now, it is 9 days before my expected period, and i have such pad cramp pain on my left side and it is radiating into my left leg and left lower back. The only thing that works for the pain is norco, but i refuse to take it at work or when i am alone with my three year old. i wouldn’t wish this pain on anybody ever :( i am sad to know that other people go through this, yet relieved to know that i am not the only one. hang in there everybody!

  13. karenzxdc

    I have constant back pain and find it hard to get comfortable at night. I have a swollen stomach, fatigue, bowel problems, aching after sex but because I’ve had a clear ultrasound a few years ago and my periods are bareable I’ve never been sure. Now I’m going for another ultrasound but I’m not sure its worth going for surgery, I’ve not had sharp stabbing pains just cramps that I assumed was from dehydration. Has anyone else had ambiguous symptoms and then had the exploratory surgery?

  14. Erin smith

    I been haven really bad pains in my left hip and it started three days ago and then I started to bleed like I was on my period but I.just had it about a week ago and now my right hip hurts I just want to know if anyone has and advice about what could be causing this.

  15. Tracey Hurst

    Hi my name is Tracey and I am 50 years old. I am 4 weeks post op from my second surgery for endometriosis. First time I had a laparoscopy to laser it away. This time I had a laparotomy to remove a 5cm endometrioma from my right ovary. They ended up taking my right ovary and tube as they were too badly damaged to be saved. My left ovary is adhered to the back wall of my pelvis, my bladder is adhered to the front of my uterus and my bowel is adhered to the back of it. My surgeon could not free these adhesions as he had done so much work in there that he felt that it was unsafe to do any more. I have constant backache and all the wonderful symptoms that come with this awful disease. The worst, for me, is the fatigue and the fact that when I am at my best, I still feel unwell. Surely menopause is around the corner!

  16. crystal

    Hey, i need help please.
    I had the surgery january 2012. i have a mild case of endo that is also on my intestines. Dr has me on continous birthcontrol. I dont know if its the birth control or what, but lately iv been in more pain and an emotional wreck. I dont like taking birthcontrol for thw rest of my life, i just want my body to do what ot was meant to do without drugs. I dont know to have another surgery or what.??????

    there are also days i eat everything, and days i dont eat at all. Constipation is also another issue.

    Im only 20, should i do another surgery? is really gonna help any??

  17. paige

    Hello, I was on the lupron for a month before my surgery and then they told me i could stop when i got hot flashes. i stopped taking the lupron which was nice. a couple days later i had sex. i bled a little after and thought nothing of it. then i started panicking because i’m scared bleeding would cause me to become unsuppressed. i’m calling the doctor tomorrow to ask her about it but i’m extremely nervous. if i’m not suppressed anymore from a little bleeding because of sex, i’m going to have to redo the month of lupron and postpone my surgery. i really hope that doesn’t happen :(

    • Paula k

      Paige,

      How are things going? I stopped the Lupron bc I couldn’t take it anymore & my dr said it wasn’t working since I was doing so much worse after a month but I don’t think I was on it long enough. I switched to another specialist & they even said it wasn’t long enough & I would be worse n4 better but oh well. I posted to Ruth about the other procedure I’m having again bc they think it’s more muscular than endo. I hope & pray u are getting relief:)
      Paula

      • Paige

        I had my laparoscopy on Thursday. The pain definitely gets worse before better on Lupron. However, I do feel no pain. The side effects like hot flashes still bother me but it’s because I have no been on add back therapy long enough. I just started the hormone replacement (add back) the day after surgery and it’s made me nauseous but I need to get used to it I suppose. I will keep you all updated! :) thanks for asking

      • Paula k

        Paige,

        So u were only on it for one month or are you still taking the Lupron? If u did or when you do stop are you supposed to go on the pill continuously? Good for u! Pain free, I’m so jealous!! Congrats:)

      • Paige

        I’m not pain free yet so I wouldn’t say that! Lol I’m currently having bad back pain that I’ve never had before.. Maybe I slept weird? But I do know that it takes time to be able to tell. After my first laparoscopy it took awhile but I really did get relief from it and taking the pill continuously. I am not taking any pill, unless you mean add back which I am taking everyday. I have to take the Lupron once every three weeks via shot so I’m due for another one soon. I don’t know how long I will be on the Lupron but I will keep everyone informed. I’ve only been on it since July 7. Definitely not used to it yet.

  18. Lisa

    reading some of these stories is really scary. My pain started in March, it was manageable then, it has seemed to be getting worse over the months and now, this is day 24 of being in constant daily pain, and it just seems to be getting worse, it feels like there is something that is pulling inside me and when my bowels and bladder are full, it hurts even more. My dr has put me on naproxin and tylenol three, but they dont seem to be working at all. I have made many trips to the er, and they have done ultra sound after ultra sound. I had a partial hysterectomy at 24. I got in to see an obgyn and I am scheduled for a laporoscopy at the end of september. Is this something that I am going to have to deal with for a very long time now? or will the procedure help?

  19. ruth

    Hi my name is Ruth I have been diagnosed with endometriosis and have had hormone therapy for 6 months and taking codiene, the effects of which are wearing off. I’m due for an operation in two weeks and can’t wait. The pain is unbelievable- back pain pelvic pain and lately the worst is the leg pain which now hurts constantly. I’ve a two and four yr old and work part time, to say it’s a struggle is a massive understatement.
    Feel like I’m half alive as every aspect of my life is affected. I know I’m lucky to have my kids though so feel very blessed despite this. Hope you all get the treatment you need x

    • Elle

      Ruth,
      I wish you the best during your op. I know what that’s like and I hope it goes well. You are a strong woman and so every women who goes through this. I know the leg pain you are speaking of and I am so glad to know you speak of it too. I wake up during the nights because of it and you can’t do much but curl up and hope that you can just sleep peacefully. Just remember we are all feeling it too!

    • Paula k

      Ruth,
      I have terrible leg pain along with other pains but the legs is the most excruciating besides my left pelvic floor. Has any one given u any insight on what causes the leg pain?

      Paula K
      ( there are 2 of us Paulas on here now )

      • ruth

        My consultant said it was related to sciatic pain, I always thought it was referred pain. The leg pain is actually the worst bit somehow, and groin pain. I’m having an operation on Saturday, very anxious about it but hope it solves the horrible symptoms….x

    • Paula k

      Ruth,
      What kind of surgery are you having? The muscles throughout my pelvis & IT bands in my legs are so tight & spastic I am going to have a manipulation under anesthesia with Botox injected into my pelvic floor & abdomen for the muscles that won’t relax. I had only my uterus out for endo but have still been in tons of pain bc of my groin & legs. I see a Urogyn in Tampa. I have had the other procedure b4 & it helped a lot. I tried the one month shot of Lupron but didn’t do it more or long enough bc my entire left side from head to foot was so tight & painful it was excruciating. I get a very deep aching pain down the back of my legs & any pressure sends me over the top. I go to physical therapy once a week for my pelvic floor spasms & it really helps. Do u believe your leg pain is sciatica?

  20. Amy

    Hi my name is Amy and I am 24 years old. I have been struggling with endometriosis for a very long time.
    I was 14-15 when I first started getting the stabbing like pains, which are in fact so painful they will stop me almost instantly and shrug over in pain. the longest I have ever had to endure this is ten-15 seconds at the max. but it was bearable,although the older I get the worse it is getting. I have constant fatigue, pain and now server bloating (I would pass for 5-6 months pregnant). I also suffer from scoliosis quite bad. so its hard to determine which is causing my pain. but I am always in it. even getting out of bed I feel my back hurting. its something that I haven’t let take over my life. I work fulltime – wife and step mum to a 7 year old. I have not been to a doctor in a long time – only hurting myself I know. but I am just soooo scared of the thought of someone telling me I will be unable to have my own biological children. Im not too sure what I am after posting on here. but it feels nice knowing that I can talk to people who know what the hell I am talking about !!

    • ruth

      Amy, You must go to the doctors, avoiding it wont make any bad news dissapear, although I do understand you are frightened. Its highly likely that with the current treatment for endometriosis that you will have a good opportunity to try and conceive. I read somewhere that its common misconception that you cannot conceive with this, it can make it harder and take longer but it is definately possible. Before you even get to that point though you need diagnosis and pain relief. Please go xxxxx

      • Amy

        Ruth, most people do not understand the concept of being a ‘nice person’ – although you obviously do.
        Thank you for you kindness. xx

  21. Deshania Ferguson

    I been in pain for 11 years ever since I had my son and yes the pain is unbearable feel like my Insides are being ripped apart. It hurt sometimes jst to put a shirt on but I still haven’t been probably diagnosed an as far as a job goes so much pain makes it difficult to work.

  22. Elle

    I am 22 years old and I was diagnosed with endo at 17. I had a solid “chocolate cyst” that was found during an ultra sound for my kidneys. The cyst was so large and solid that it appeared on the screen as an unknown mass. Ironically a few days later I was hit with this unbelievable pain. I was rushed to the hospital and a few days later they decided it needed to be surgically remove because of how large and solid the mass was. I asked for a picture of it (picture two large softballs conjoined). To see such a thing that was inside of me tested me up and my family. No one knew how long the mass had been there for (probably years since it was so large and solid) but I remember ever since I first got my period the pain was unbearable. Everyone thought I exaggerated my pains or even when I mentioned that I got back aches and leg aches no one understood. I would say that I am lucky that my pain is not severe everyday (only during my period will it feel like death). I do however experience that uncomfortable tugging or like a bowling ball weighing my ovaries down. Till this day I am a till trying to find answers. I love children and one day hope to be a teacher as well as a mom, but with endo I fear everday that I may never ever be able to hold a child of my own which breaks my heart. I wake up in the middle of the night with aches from my back down to my toes. It’s the oddest thing to think that endo can cause such pain but like every women with endo would say, I just can’t explain the feeling.

  23. Jan M

    I suffered with endometriosis until I found a reproductive endocrinologist who specialized in laser surgery. My main symptoms were painful periods and very painful bowel movements which felt like I was delivering a baby. A 6 hour very meticulous surgery at age 40 relieved me of all of my symptoms for years. I went thru menopause at 50 and assumed I would never have to worry about endometriosis again. Now at age 60, following a terrible stomach flu some of my symptoms have returned. I’m wondering if it is adhesions. Right now I’m having pain at the crease between my abdominal and thigh. Has anyone experienced this?
    For those of you who are worried about becoming mothers, please don’t worry. If you have trouble conceiving see a reproductive gyny have him or her remove the endometriomas and you will have a very good 6month window to conceive. Then the pregnancy will further shrink them! :) Please don’t worry but see a sub specialist. Most regular gynecologists do not know about endometriosis. Whatever you do, don’t let anyone tell you that you need a hysterectomy, you don’t! Hysterectomy does not cure endometriosis.

    • Tricia S.

      Hi Jan
      If you are having pain “at the crease between my abdominal and thigh” then I suggest getting checked for an inquinal hernia. That seems more likely than your endo symptoms returning after a bad stomach flu. You could have popped a hernia while having a BM, or lifting your purse.

      Along with Endo (dx after 20 years of suffering), I’ve also had 9 hernia repairs.
      Good luck!

      • Jan M

        Thank you for telling about the possibility of an inguinal hernia thankfully I am feeling better now but I will keep this in mind if symptoms return. Thanks so much.

  24. Alison

    I’ve seen many people reference pelvic floor pain on here in relation to endometriosis. What does it feel like and how can I tell that pain from the other?

  25. Paige

    I cannot describe how happy I am that I found this blog. So many blogs you read haven’t been updated in months or years, and yet this one is always being updated with comments. Today I went to my post op and looked at the pictures from my laparoscopy. She took about 20. It was crazy to see what was going on inside. Adhesions from my bladder to my pelvic side. Little spots of endo. My bowel completely stuck to a wall inside my pelvis. She took action pictures of her actually cutting the tissue away from the side and then showed the after. It was seriously amazing. My previous laparoscopy had maybe 3 pictures and it honestly showed nothing. It was probably because i only got two incisions and she couldn’t see everything. My previous doctor also burned everything off via laser. The new doctor I go to believes in cutting out the bad tissue, not lasering it off. And she was also able to unstick my organs. What made me relieved was she also shot blue dye through my ovaries or something and said I am still fertile so that made me very very happy. As for now the plan is to get my shot of lupron every three weeks, and take add back therapy everyday. She said there is no harm in doing this since add back gives me enough estrogen to be okay and i also will go for bone scans and bloodwork and what not to make sure i’m not having any bad long term effects. I will keep everyone updated on how I feel because right now I still feel crampy/achey from the surgery and it is honestly too soon to tell. As for the lupron right now, I feel normal again. When I first took it without add back I felt tired, had decreased sex drive, and got hot flashes. I feel normal now with the add back.

  26. kelly

    I just came upon this site and it is very helpful to hear about so many other women that have been though so many of the same frustrations, confusion, dismissive health care professionals and pain that I have experienced since my late teens/early 20s. I am 38 and when I was around 25, someone told me about endometriosis as I had never heard of it before. She told me to try her gynocologist, who did a quite painful and uncomfortable internal ultra sound (I really dont remember the details) of sorts but said she was surprised to find that I “didnt have it”. However she said even if I did, the only treatment would be birth control pills. So I went on them for over 10 years, and they actually did decrease quite a bit of the pain, to where I rarely had to take days off from work as previously I had before, averaging a day off a month or every other month. I stopped the pills 2 years ago, as I no longer wanted to put those hormones in my body anymore and also wanted a break from different side effects of the pill itself. The pain has increased tremendously since, actually worsening than in my 20s. In fact I now experience “in between periods” pain, thinking at first its what ovulating just normally felt like, but from researching more on endo this past year it seems to fit the description of symptoms. No ins now, so I wont be able to do much in the way of more diagnostics, but could I have it even though I was told otherwise by one gyno? Other (many) drs over all these years have pretty much dismissed my inquery to them. Also, even though most symptoms have been spot on for myself (including several almost passing out episodes when the pain comes on!) from my own research, it seems as though heavy bleeding is a common one. However, I historically have always have very light bleeding, and lasting only a day or two. Which I am told by my “normal” friends (whom I love but arent very sympathetic) that its not “normal” to barely bleed especially with all the extreme “complaints” of pain. So sad, confused and frustrated. Wow this was quite long…apologies.

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

  28. Sol

    I am so glad I found this site!! For me, the story began 5 years ago after getting married and quitting birth control pills. First, I started spotting a couple days before my period; but after a few months of unprotected sex and not getting pregnant, I decided to visit the OBGYN, presenting both of this issues. After some blood work and an endovaginal sonogram, he diagnosed me with anovulatory cycles ( no ovulation between periods) although I would get my period every month, which is not uncommon. He gave me the option of birth control pills or Clomid, I turned both down, and decided to wait. Now, 3 years later, ready to grow our family and spotting for 7-10 days before my period l, indecided to follow my gut instinct and look for ansecond opinion. After much blood work, biopsies and another sonogram, the new OBGYN believes I have endometriosis. I have 3 out of 4: retroverted uterus, spotting and 5 year infertility- minus the pain! But… From what I have read here, it seems to me as if the vaginal stabbing sensation I often feel, the back and leg pain are NOT normal at all. My laparoscopy will be on 9/16, hopefully all is well and I am able to have kids and my fallopian tubes are not as damaged as she seems to believe.

  29. Wen

    Hi! I have found this site very helpful, i think it describes perfectly what it feels like to have this disease, I was diagnosed with endo a few months ago, and had surgery back in May of this year, but i’ve been dealing with the pain for a few years now. At the begging I felt like nobody actually listened to me, i had difficulty walking, my legs hurted a lot, and still do but not as much since the surgery, what my doctors always told me is that i was overweight and had some cysts, i took me a long time to finally discover what I actually have.
    I think is really frustrating when people don’t listen to you, because the pain can be really unbearable. I’ve been on medication since May and i feel better, but the pain in my legs is really annoying, i can’t be standing for a long time because the pain gets worse and my legs feel tired.
    What i discovered recent is that sleeping in foetus position has helped me a lot, i will soon start going to the gym (i just to go last year, the pain wasn’t so bad) see if it helps me :) .
    Stay strong, ladies!

  30. Nicky

    Hi my name is Nicky.

    Firstly I’d like to say that it’s no nice to hear other peoples stories and know that I am not alone in this.

    I have been suffering from chronic abdominal pain for over 5 years. 4 years ago I was diagnosed with PCOS and was put on a combined contraceptive pill. I was still suffering from abdominal pain just before a my monthly period. Last year the symptoms worsened and were affecting my bowel habits. I was sent for a colonoscopy and was diagnosed with IBS. For this I have been taking buscapan for pain relief.

    More recently over the last few months, my blood pressure had sligthly increased and I was getting headaches and was taken off the combined pill and put on to micronor. I have taken this for a month and the pain has been excruciating. I went to see a gyny through private healthcare who said that I may have endo. And MRI scan was done- this only showed the cysts around my ovaries (due to the PCO) but did not show signs of endo. The consultant advised that he was unable to carry out the laporoscopy until December and said that the lapo is the best way to see if I do have endo. I since went to see my GP on Tuesday and was sent to the hospital as he thought I had a cyst. An internal was done and I was again told that my symptoms are of endo.

    I haven’t had a period in 6 weeks and have tested negative to a pregnancy test. I have contacted my private health care to see if I can see another consultant to get one more opinion. I’m currently taking mefenamic acid which is causing me to have awful stomach cramps.

    I did find that when I was on the combined pill, my symptoms weren’t as bad, as the pain would go away after a period and would gradually come back before a period however now that I’m on micronor- the pain is excruciating.

    I haven’t slept for weeks, and have been off work for over a week. Thankfully they are very understanding.

    I was wondering if anyone had any suggestions for pain relief- I am due to go on holiday in 3 weeks and am worried that this pain will ruin it for me.

    Thanks.
    Nicky.

    • Wen

      Hi Nicky, hope you feel better soon, for the pain i take diclofenac, it helps me a lot i think is stronger than ibuprofen, i also put warm pads on my abdomen and legs, my pain is mostly around my legs, so when i’m in bed i like to put a pillow below my knees because it hurt me when they are stretched.
      I hope this helps a bit.

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

  32. nancy mitchell

    Hi my name is nancy I’ve had chronic pain for several years since my hysterectomy ,and I still have severe pain that comes and goes in my lower left side of my stomach . Feels like I’m being stabbed. The pain goes down my left hip and buttocks around my left side back and also into my calf. I am barley able to walk during the pain .After the pain subside I have severe bloating and gas! I have such severe bloating all the time. Will someone tell me if this sounds like endometriosis? Help

  33. Christine

    Glad to know I am not the only one.. I am 27 years old this all started two years ago when I had my daughter c section ..me and my friend was pregnant the same time and both had come sections.. She got better and my pain got worse.. When I finally got my normal period I started working.. Pulling trucks full of food.. I would get very sharp pains I knew my period was coming in two week.. The pain got worse to the point I have to quit my job.. So I went to my doctor who delivered my baby.. Told me everything looks good.. Kept going backo

  34. Christine

    Glad to know I am not alone.. This all started when I gave birth to my baby girl I had a c section.. My friend who was pregnant same time had a c section before me so I knew how it would be like to heal.. Well the pain never stopped.. Once I got my period they would be so heavy I would get pain two weeks before and after.. The pain started to effect my work I had to quit.. I am in pain all the time if I do to much house work my stomach swells up like a balloon.. I can’t wear underwear after awhile it makes it hurts.my doctor has had me seen a surgeon that gave me shots to numb my nerves worked for a week went back this time a month.. Then my ob puts me on birth control seemed to be working till I bleed for four week we also tried the depo which worked great till I bleed for weeks.. So I figured I give the depo one last try.. And it hasn’t helped me one bit beside no period.. The pain is ten times more painful I swell up that any kind of pants sweat pants hurts.. My left side feels like it’s going to burst open.. I have an appointment Oct 14 giving me a ultra sound then I get to see what he has to say.. I can’t live like this can’t wear nice clothes because they don’t fit from being swollen and I have to run after a two year old

  35. fara patel

    Am having a severe pain but in sonography there seen nothing my laparoscopy also done in 2008 but now also am suffering from endometriosis pain even I am gaining my weight too. I am also on pshychatrist medication. Please suggest me the right decision. My age is now 35 & even am having a very very scanty menses please help

  36. I have been having horrible pains since my dauggter was born in 2008. I am now almost 31 and it has gotten worse. I called my doctor yesterday in hopes that I can figure this out. I never had painful periods when I was younger and I was pretty regular. That’s not the case anymore and I am pretty sure I can’t have any more babies because of this… I haven’t prevented pregnancy for a year in a half and nothing. I have two healthy children at least but it is disapointing to know I probably won’t be able to have anymore. I have times I hurt so bad I can’t stand up. It goes away shortly after but I don’t want people at work or family to see me in pain. Its embarrassing and I don’t want to be a complainer. I go about my daily life but some days I wish I had just stayed in bed. I just keep focused on my kids and remember I have to keep going for them. All I have tried is Ibprofien. I take 4 at once but even that doesn’t help somedays. My mom had a hysterectomy at age 28 because of it. My sister also had it so I am high risk. I know it could be fibroids but with history alone I am sure its endometriosis. I even showed my boyfriend my swollen tummy yesterday. I even woke up from the pain last night which is new. Normally I can sleep through it but it was early morning and my pain meds wore off. I am hoping to find a solution to this soon. I already have it in my mind I can’t have babies. Its sad but like I mentioned I have two healthy kids. Its just hard reaching these milestones when you are still young.

  37. Maty Trainor

    Well done you.
    You have been inspiring to me in my quest to produce a leaflet on endometriosis. Yes there are UK and european and american leaflets but I want to produce something written by a local woman living with endometriosis for local women.

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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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