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.

342 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.

  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!

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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.

Twitter

  • I've got some dates to go and see members of the Gloucestershire CCG about treatment of endometriosis :) I was overdue some good news. 3 hours ago
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  • RT @paintoolkit2: Can any tell me why pain was not included in this research? Have asked others, but no response. nhsiq.nhs.uk/media/2514788/… …… 10 hours ago
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