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.

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

  1. Thanks for this article – it’s very helpful. I’ve been experiencing heavy and extremely painful periods since the start of it, 18 years ago. I’m 30 years old and gave birth to my daughter three years ago (today!) by emergency c-section. Since her birth, my periods, although very regular, have been increasingly more painful. I have pain throughout the entire month now, instead of just the week before my period. Back pain, abdomen pain, hip pain, leg pain, groin and bladder pain. I’ve recently been in the hospital 4 times looking for answers and all tests have come back negative for kidney stones, gallbladder, uti, and more. One of the doctors in the emergency room asked me if I’d ever talked to my gynecologist about endometriosis. I started doing research and realized that I had almost all of the symptoms (if not all of them) and have been realizing a slow progression of increased pain over the last few years.

    My husband and I started trying for our second child over a year ago and were unsuccessful. After a year of trying, we gave up and found content with one. However, putting the pieces together now, I realize endo might be a perfect explanation for our infertility. Although we’re not looking to have any more children at this time, it’s nice to know there might be a reason as to why it never happened. Something I was chalking up to stress at the time.

    I have an appointment with my gynecologist this week to discuss everything but it all feels so overwhelming, I almost don’t know where to start. I am nervous they’ll insist birth control when I’m not interested. And I know I have to push for a specialist if they don’t agree to pursue these issues further. I’m also of course nervous about being diagnosed and living with this, and then on the opposite scale – not being diagnosed and having to continue searching for answers.

    Just sending a little note out there for others who might be experiencing the same, as I feel very much alone on this journey since I don’t know of anyone else personally who is suffering.

    I can be reached at jayleareid@gmail.com with any suggestions / advice you may have!

    Thanks and good luck to everyone.

  2. Hi all. I’m trolling through the Internet to find an answer and maybe this is it. I am in pain the majority of the time. Pain in tummy, back and legs. I’m getting a little low with how it’s wearing me down. Is this the kind of symptoms everyone else has experienced. It feels a little better when taking birth control but periods really heavy. Thank you if anyone gets back

    • Paula

      That is the same pain I have. My tummy is tender to the touch but I’m always in severe pelvic & leg pain. Check w ur gyn. At the very least they should do an ultrasound. It could be endo but it could be cysts or fibroids. You really have to push doctors to do what u need to for ur health. I went to one of the best & he didn’t even want to do a lap to look around. I went elsewhere & I’ve had 2 surgeries to remove it & a hysterectomy. We’re the ones in pain & it’s seems the norm that they brush us off….

  3. Annoymous

    Im 15, I keep getting pains in my stomach, ribs, just below my body, my leg sometimes when I walk and my back when I stretch. I also havent been on my period for nearly 4 months what is this?

  4. Mary S

    Thank you! I suffered for years undiagnosed and just went through an 8 hour hysterectomy on Tuesday. They had no idea…took three years to get into the gym department at the VA. They made me feel like it was all in my head for so long! Made them promise a hysterectomy after trying an ablation in September (which failed). She was quite shocked to find my ovaries buried in endometriosis- left had attached to pelvic bone and right to uterus. My post surgical pain is quite intense, but finally having an answer to what the problem was is a huge relief! Ladies…DO NOT QUIT AND ACCEPT ANY ANSWER IF YOU FEEL SOMETHING IS WRONG! You know your body!

  5. Elyse

    Hello, I was diagnosed in December 2014. I have been taking bc pills and still have an iud. The bc pills worked for a short period, but now the pain is back and it hurts more than ever. I have an appointment on Friday with my Obgyn to discuss surgery. I’m not sure it will work, but I am desperate. I cannot stand the pain anymore.

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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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