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.

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

  1. Emily

    My name is Emily and I am currently 18 years old. For a while now everytime I get my period I have an ungodly painful pain tht happens in my vagina. It is very hard to describe. It feels as though someone is stabbing me in my vagina and it shoots through me. I have to grip something so right in order to not scream from pain. It usually happens te first couple of days of my period. It has lasted from as long as four hours to 24 hours. The gynecologist told me it was just period pains and put me on birth control to help control it. Does anyone have any idea what this is? To go to the restroom or even get out of bed when these pains occur is impossible.

    • Hi Emily, sounds exactly like what I have been through for the last few years. Get a second opinion. That is what I am doing at the moment; if you think something is not right, ask questions and demand answers.

  2. Georgina

    I’ve had endo since around 20 and I’m now 33. I’ve had multiple surgeries and drug treatments over the years, and the only comment I would make to anyone else with the condition is to keep pushing for treatment. I got told so many times nothing was wrong, it wasn’t endo, it was in my head… You know when there is something wrong so don’t give up!

    • Hi. My name is Melissa. was just wondering what all surgeries you have had done? i am 39 now and have four kids. had surgery two years ago for a cyst on my right ovary and had an ablation done as well. my doctor found endo on the backside of my uterus while she was doing the surgery. she removed all she found and i felt amazing for a year! no back pain, it was great! i have not had a period for two years now either. i still have the pain and symptoms of being on a period. so anyways after a year i noticed the back pain slowly coming back, and after a year and three months it was horrible again! went back to doctor and she did not really act like she would do surgery again and put me on birth control. took it for three months and stopped, really did not notice a difference and do not like taking medicine. so i was just wondering if you have had more than one surgery to take out endo?

  3. Pingback: Does Back Pain Affect Pregnancy

  4. Rachel

    I am now 25 and was diagnosed with endemetriosis at the age of 23, I had and endoscopy operation to clear away all the necessary from this diagnoses….however 15 months down the line I am now back to where I was before my operation. Amongst the agonising pain and discomfort its mainly frustrating to know that endemetriosis isn’t something that can be permanantly cured! Unless you have a baby I’ve been told :-S

    • Eve

      I was diagnosed with medium severity endometriosis about three years ago at 23 years old. I didn’t have heavy periods or many of the other symptoms, just a terrible burning and aching in my abdomen that came on quite quickly. I had a laparoscopy to remove the tissue, then went on the Zoely pill for three years on the recommendation of my (excellent) gynaecologist. After a few months, it COMPLETELY went away and has never come back. It certainly wasn’t an “uncurable” disease for me.

  5. Ashley

    Not diagnosed yet but now that I’m in “perimenopause” (also not official diagnosed) my periods start and end with undulating pain in my lower right abdomen, not in the hip crease, but just above and to the left of it (as me, not as looking at me). Lately it doesn’t “bookend” my period closely. It starts early and stays late. Have a dr. appt first week of January.

  6. aimee

    Hard living with condition so painfull and have depression and limited enjoyment with walking with the pain

  7. christine

    Hi i have been living wth endo for 3 or 4 years i have tried many different birthcontrol and nothing.i have pain all the time day and night sometimes for weeks at a time.i am living in hell i am very active with 4 kids so having more is not a option.i just want to be able to go to work and not feel dead by the end of the 8 hrs.any sugesstions??
    I have even been taking natural herbs to help
    It was working but after a year it stoped.
    And having surgery i cant take off the time from work to have surgery.i am loosing out on so much in life .

    • Paige

      Birth control does not get rid of endo.. Surgery will. Birth control is used after surgery to stop periods altogether or make them lighter. Birth control itself does nothing to get rid of endo. Endo can stick your organs together and only a skilled surgeon can unstick it and cut out the endo. I know this because I tried birth control and it did nothing until after I had surgery and stopped getting my periods. The recovery is really only one week and all you need is a laparoscopy which is three barely seen incisions. Surgery was the best choice I ever made.

  8. sharna

    thank you for sharing, i have not been diagnosed yet and my first gyno app is in february… I’m freaking out a little bit, i found your description very closely describes what I’ve been going through, although i have been diagnosed with IBS and was told to deal with it until i found my current GP and he took me more seriously, I’ve always had persistent period pain but I’ve never considered it chronic before, i take pain killers occasionally but mostly i just deal… its my seemingly random dull aches and stabbing pains that have me concerned i will be diagnosed with endo soon, also i have bowel symptoms and my cramps are worse around bathroom times, does anyone else have this issue? also i was wondering how long it generally takes for a confirmed diagnosis? I’m dying to know if I’m going to be able to become a mother in the future, infertility is my biggest fear at the moment…

    if anyone would like to share their experience with me i would really appreciate it :)

    • sharna

      oh! and i forgot to mention the painful sex (sometimes but not always) i always have had a once in a blue moon type of deep pain during sex but it has become a lot more frequent the past month, and the back pain!! i don’t know if mine is all connected because i have not been diagnosed for sure but I’ve always had lower back pain for the past few years but it is almost all the time now, especially after standing up for a long time

      does anyone else have these problems?

      i can’t decide if i want to brush all of this off as IBS or if i should really be concerned!!

      I’m always thinking I’ve over reacted because the pain disappears but then all of a sudden its back and not always in the same ways

  9. Paige

    Ibs wouldn’t really cause pain during sex in my opinion. I was diagnosed with Ibs but the pain still continued after that diagnosis. Your gyno may try to dismiss you because most gynos don’t know how to treat endo or even diagnose it. They usually look for “heavy periods and bad cramps” as a sign that you may have it which didn’t apply to me at all, and yet I still have endo. If this has been going on for a while, it wouldn’t hurt to get a laparoscopy to figure out what’s going on. Trust me, I’m mad I waited. I was bossed around by doctors and turned away for a few years before I couldn’t take it anymore. Infertility may be affected but find a good doctor who can take out the endo and keep it from coming back and you should be okay. My doctor actually shot blue dye through my Fallopian tubes or whatever and said that that was a good sign.. So don’t get upset about that until you truly know you can’t have kids.

  10. Jo

    I have had the lap done almost 2 years ago and have been pain free until the last month, the constant Pelvic/Lower Ab pain is back! I am on meds to treat a possible infection, but still in constant pain. I have been referred back to the Gyno doc and am awaiting my appt. I just want to cry all day every day!

  11. CB

    I have dealt with endometriosis and fibroids since I was about 20 and I’m now 33. I had an ovary removed at 22 and after the surgery i saw multiple doctors because I had terrible pain afterwards. They all acted as if I was crazy, I did my own research and diagnosed myself as having endometriosis. 2 years later I had to have a fibroid removed from my cervix, I was told I would never have a child through natural birth. I decided to have a child and got pregnant after only 1 month of trying, my daughter was delivered via c-section. After my c-section a lump started to form in my stomach, the lump was slowly getting bigger and was really painful during my period. Finally after all this time I was diagnosed as having endometriosis, but the bad news was during my c-section some of the scar tissue moved into my stomach and settled in the muscle area so another surgery to have the tissue removed. 3 years later and the pain is as worse as ever but I now have so much scar tissue that another surgery won’t help me. Constant pain has been the story of my life and now I just pray that my daughter will never have to deal with this.

  12. Jada

    Hello All,

    I am a new poster to this community and am so glad I found it! I’m 34 and just had my second surgery for fibroids. I had an open myomactomy over two years and the doctor couldn’t remove all of the fibroids. However, I began to have very painful periods again in the beginning of 2014. They would be so bad that I would take days of from work and lay in the fetal position. I found another doctor who had high ratings but she was just a regular in and I don’t believe she had much experience with fibroids. So after having multiple ultrasounds she still felt like it was just “regular” period pains and put me on birth control. My body does NOT do well on bc. I truly believe the hormones or whatever is in it makes my fibroids and periods worse. Anyway, I felt like she was not taking my concerns seriously so I found a fibroid specialist at GW. After the first visit, he confirmed not only go I have multiple fibroids, but also possibly endometriosis. No doctor ever mentioned that before. Long story short, I had a laparoscopic myomactomy in December. He said my case was one if the worst he ever saw. In fact he used the words “atomic bomb”. Not only did he gave to remove numbers of fibroids, but my bladder was twisted and connected to other organs and was above my belly button! He also had to remove endometriosis from my right ovary. I kept telling my old doctor how much pain I had on the right side too. Anyway, after surgery he put me in bc, which of course screwed me over but I stopped taking it yesterday. Bad news is after I started taking bc I had all the symptoms of a period but no period. My right side is killing me again and the hip pain hurts like hell. I pray after all the bc is out if my system, things will be better.

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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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