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've lived with endometriosis for seven years and Joint Hypermobility Syndrome for three. Trying to live and work with both illnesses as best I can.

723 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.

  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

  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.

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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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