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.

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

  1. Michelle

    Hi, thank you for this- it actually had me in tears. I am about to have a laparoscopy in a few weeks and have seen a specialist today. It has taken more than ten years to get my GP to refer me. I just live in agony and your words below absolutely sum up how I have felt for years. It has become progressively unbearable the last two years and I cannot remember what life is like without the back,hip and pelvic pain. I am woken every night with burning hot pain.
    ‘The pain caused by endometriosis haunts you both in sleep and in waking, tiring your body and causing chronic fatigue.’
    My doctor told me what I feel is ‘normal’ and ‘common’ He then said ‘You probably walk too much’ in one breath after trying to understand the back pain I suffer- he then said ‘oh you need to exercise more’ because I couldn’t lift my legs high enough during the examination. By this point I was in despair, he said ‘You will have the menopause in a few years so it will be better’ i am 41, fit and healthy if you take away the symptoms- I walk everywhere as I choose not to drive, do not smoke, take drugs or drink. I don’t expect the menopause anytime soon and I have been visiting my doctor for many many years telling him I am in agony. I had to beg in tears for him to prescribe painkillers in the past as he was reluctant to do so and then for a referral, he said ‘They may not even see you’ Within four days I had a call from the practice and then within three weeks an appointment. I saw the specialist today and he was wonderful and immediately suggested endometriosis after checking my history. I am now hopeful for the future and so thankful to the new doctor.

  2. Cynthia Alexandet

    I was diagnosed with endometriosis 15yrs ago after an hsysterecium and constantly have flair up pain in my lower back like I’m having labor pains hip thigh and knees theyve been inside me so whatever this error is the doctors already know how and what to do to calm it down I took 1 ibuprofen 800 3 ibuprofen 600 and 6midols at 2:27am 11/21/15 it finally calm down and the pain started in my sleep 11/20/15 6am when my alarm clock went off. It’s not fair but I can’t fight with these people when GOD is ready for me I’m ready too this pain is so uncomfortable

  3. Barbara

    I was diagnosed with endometriosis a month after my wedding in 1974. I had just moved from Oregon to South Carolina, and I was 24 years old. A hysterectomy was advised. Three years later, my new gynecologist, who was my life saver, performed a laproscopy and discovered the terrible mess that encased my reproductive system, was attached to parts of my intestines, and adhered to my back. He removed as much of the tissue as possible, but informed me that I did not pass the dye test. My ovaries were twisted and adhered to the back of my uterus while my fallopian tubes were twisted and attached to the front of my uterus. It was unlikely that I would ever bear my own children.

    I ran and trained through my constant pain, which sometimes freed me from it. Then, at 29 years of age, I became very ill, so I went to my doctor. I was pregnant with most likely an ectopic pregnancy. We waited over the weekend, and I returned to my doctor and specialists early Monday morning. The examination showed that my little embryo had made it to my uterus and was implanted there. I immediately fell in love.

    I was constantly sick throughout my pregnancy, but I delivered an 8 pound, nine ounce boy vaginally.
    After giving birth, I had six more laprascopies, holding onto that thread of hope that I would conceive again.
    But I never did. My son is testament to the amazing power of the female body: I just needed one egg to find it’s way through the convoluted mess of my reproductive organs, and he made it.

    The thing that young women need to be aware of, that I had no way of knowing, is that endometriosis is not just about the excruciating pain. It is also about the havoc that it does to your immune system over the ears. Do your research. At 49, I had a complete hysterectomy. I was very unhappy for a few weeks, until my life became nearly normal.

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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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