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.

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

  1. Emmy

    I have been goin through all of these symptoms to the point I shake and hyperventilate and my doctor wont listen to me and im struggling to make it through work each day.I am goin to a new doctor but have to wait I was advised to report to the e.r. but I cant afford a e.r. trip everyday for 9 days a month.

    • Caneshia

      I have been dealing with endometriosis for the past 3 months and it has been hell. I have severe abdominal and back pains and my boyfriend said that I shake and shiver at night in my sleep. I have also had so many lab test and blood test done that could not indicate the disease. I also had to switch gynecologist because my first gynecologist did not want to check me for endometriosis even though I let him know that my mom had the disease and the same symptoms that I had. He just kept telling me it was period pain but I got a second opinion. I had a laparoscopy done to prove that I had endometriosis. This article shedded so much light on what we all are dealing with. I am trying to learn how to deal with this disease day by day. I have been out of work for weeks dealing with the chronic pains of endometriosis and it’s tough when you know what’s going on but your job request documentation from a doctors visits for everyday that you miss and if you miss a few hours I’m still in the process of working on my leave to be approved so that I can be ok.. I wish everyone we’ll because this is no joke

  2. Alison Minchin

    I’m sure this is what I have but my doctors havnt considered that. I have had lost off blood test done and scans for kidney as my back hurts and they have come back clear. I’m 55 I stopped my periods in my 40 I have been on HRT since then. The description off these pain r what I have been going through for the last six months pain every day I’m tired and now getting pissed off and getting very tearfull. My Doctors r now referring me to have my bowls checked and my intestines scanned but I really think there looking and testing for the wrong things.

  3. Hope

    I have been trying to find someone in the medical field to do something to help me. I have been in a living hell of constant physical sicknesses and pain from excruciating muscle spasms in different areas of my torso, lower abdomen and legs. Constant exhaustion. Have been repeatedly told I have lots of blood in my urine with no infection present. Loose and painful blowel motions. Sudden enlarged liver. Weight gain and acne that I can’t control. Lumps in my breast and back pains. I suffered severe painful periods with heavy bleeding since my early teens and only helped by the insertion of a mirena after uncontrollable bleeding after the birth of my kids. I was recently diagnosed with ovarian cycts. I have had Endometriosis removed three years ago from my cesarean scar. Every time I saw my G.P about my symptoms of painful lumps in my lower abdomen, I was told it was scar tissue and sent for numerous scans, only to be told its a large mass that is getting bigger with ni further action being taken. Finally after 3 scans and many visits with my G.P, with no diagnosis I demanded a biposy. I have always believed I have had Endometriosis. I had the biopsy and Endometriosis was confirmed. I had two very large masses of Endometriosis removed. This was after years of hell trying to get help from doctors. My symptoms now 3 years later are making my life a painful misery. Muscles spasm type pains that hit me suddenly in different parts of my torso. Chronic painful loose bowel motions especially after eating, blood in my urine, acne, weight gain, facial hair. Dull ache in lower abdomen that never goes away and extreme fatigue and exhaustion. After years of hopless doctors visits, I finally have found a gynecologist who has diagnosed enlarged ovaries with cysts on them. I was also told I would be having a laparoscopy and could potentially be facing a hysterectomy or surgery to remove what Endometriosis they can, along with Hornone treatment. Please forgive my essay long lifestory but I am scared and desperate as to what I should do, as I have read conflicting things. Any feed back would be greatly appreciated. I am 36 years old and feel so unhappy with this situation. Like all of you poor ladies who suffer from this hell I just want to be well and pain free.

    • Alison Minchin

      I relate to all that u have said my Doctor has no idea I’v had so many blood test urine test scans. I’m now booked in for a MRI and a endoscopy. I have mentioned endometriosis but my Doctor said it wouldn’t b that because I havnt seen a period for 10 years and I have been on HRT. But every month I will sill get the period pains. I get pains every day some mild than others. It’s making me so depressed. I could do with a gynaecologist to have a look. I also suffer from fibromyalgia which can also cause pain but this pain is definitely a period like pain.

    • Jenn

      A hysterectomy does not cure endometriosis! You have to realize that you will go though menopause and the endo can still come back! I’m 35 now and had a hysterectomy 3 years ago but they left my ovaries and my endo came back! I have it on my bladder again and it sucks! I know how scared you are and how bad this disease sucks but everybody I talk to regrets having a hysto! At least they left my ovaries so I didn’t go into menopause! Goodluck and hope this helps a little!

    • Paula

      Hope & Jenn
      I chose to have a hysterectomy at 36. I have all the pain that Hope talks about. It starts at my rib cage and goes down to my feet. It seems a lot of people on this site have the same problems with leg & hip pain and I wonder if if its from the Endo growing into the muscles and nerves. I went to a reproductive oncologist and she told me if they left my ovaries I would have to have surgery again in a year and a half to two years because the hormones feed the endometriosis. I had all of it taken out and I’m not cured but I feel better than when I had it. Some days are better than others…. I started on progesterone a few months after & estrogen a year later to starve it out for a while. My dr said the meds don’t activate the endo as much as our natural hormones.
      I wish u more better days💐

      Paula

    • Krystal hill

      I had/have im sure endometriosis and ended up having a hysterectomy and was great for years. Best decision i made..

  4. Very good analysis. I’ve used the “toothache” pain to describe the inner nerve pain. Sometimes-in addition-my body will shiver and chill from pain. I know I’ve become so immune to the effects of the pain. I’m working on being more aware of what my body needs to mitigate the episodes.

    Your article gave me much relief in knowing others understand. The mental impact, woah–it’s not going away is difficult to process; it can be very frustrating to go to sleep in pain & wake up in pain. Management is key- I got off heavy pain killers, only because of side effects- I’m now trying other methods.

    An exhausting journey, but solace in knowing I’m not alone.

  5. Wanda

    I found this help in trying to help my daughter understand that first of all she isn’t crazy. It is also helpful in explaining it to her boyfriend and teachers. It is very emotional living with this disease and feeling like you always have to explain yourself and apologize for how you are feeling. I have dealt with this all of my life and even before anyone had a name for it. Some doctors really don’t get just how much this disease controls your whole life. Thank you for this information.

  6. A English

    Thank you so much for describing your pain as a “toothache pain” . I have been struggling with this for awhile now and it had finally gotten to a point where I couldn’t handle it anymore and I have a CT scan scheduled later today.

    I thought I was going crazy when describing my pain as a toothache like pain and you are the only other person I have seen describe it as such, it’s a nice feeling to know that I’m not loosing my mind and this genuinely could be what’s wrong with me. So thank you, so much.

  7. Karina Diaz

    I don’t have insurance or doctor and with that said I have to rely on natural remedies or over the counter medications. Well my period felt today and yesterday as if i wanted to go so bad to the restroom and I coudlnt’ my insides feel like burning fire and knifes stabbing my abdomen they pain is so bad I fall to the ground and hardly could walk. My insides bellow my pelvis felt like fire. I have a feeling like going to the restroom but I cant’ it just bothers me, I hate for any women to ever go thru this.

  8. Roweena

    I am currently scheduled to go to my gyno and see if I can find a resolution to all my pain because I did my own research and know from my symptoms that I am provably facing stage 4 endometriosis with bladder and bowel involvement due to the bleeding that I experience with each period. I bleed so badly from my rectum and bladder that I not only use tampons but also wear a maxi pad to contain it all. I have been dealing with the unbearable pain during my periods since I was a child. I have another complication to contend with though because I have hashimotos thyroid gland and I am going through trying to get that under control as well. I’m 45 and completely done having children because I learned after losing several pregnancies and barely carrying my daughter to term that my hashimotos disease causes infertility issues that are pretty much irreversible. My pain is so bad for the first two days of my period that it is difficult to function at all but I am a widow and must take care of my daughter on my own so I have no choice but to function without change when it comes to work. I so hope that if I am forceful enough in controlling my own treatment that I will be able to be pain free once I get through all the surgical repairs.

  9. Quyncee

    This has helped me to better understand endometriosis. I have always had terrible periods and hormonal imbalances since a very young age. These last 2 months have been the worst I have ever experienced and not just while on my period. I eventually had to go to the ER where they couldn’t find anything wrong with me but said there was blood in my urine. I go to the specialist this next week and am really hoping for a diagnosis and hopefully some treatment that will lessen my syptoms. I also get severe leg pains but I work on my feet all day and ride a bicycle to and from work. I am only 24 and although I have not had children this is without a doubt the worst pain I have ever experienced in my life. I was fortunate that my first visit with a new doctor her first assumption was that it may be endometriosis so I don’t have to waste anymore time wondering.

  10. Mikki Hames

    I was diagnosed with endometriosis 5 years ago and given the mirena coil to help with the prolonged heavy bleeding. This worked wonderfully until recently. Ive been suffering chronic groun pain, back pain, urine retention, blood in urine, pain on passing both urine and pooh. A visit to my GP has resulted in tests being carried out to check for cancer of the bladder and kidneys which thankfully its not. However, they have found a cyst in my pelvic area which is 66cm x 77cm…. let me say the pain i am living with while undergoing tests is unreal and the dragging pain, ache, shooting pain which is crippling at times is awful. Im hoping when i meet my gyne he can offer me a treatment that will bring relife. Can i ask is anyone else going through symptoms like me, any help and advice would be really appreciated.

  11. Rebecca

    Hi All,

    I’ve not been diagnosed, waiting on a lap that my gynocoligist is REALLY hesitant to do. Back pain, lower abdominal pain, headaches, GI symptoms flare up during mentruation. Also suffering from colitis that was diagnosed about 5 years ago. It’s very difficult to be brushed aside because you look “fine”, but are suffering so badly most days of the week. I’m lucky to have a wonderful husband and toddler to keep me going, but as you all know, it gets really frustrating. My heating pad is my best friend most days. May we all find the answers, help, and understanding that we need from the medical community. This website and comments from others who are going through similar struggles is so comforting, thank you ✌

    • Tara

      Hi ladies!
      I have been in and out of hospitals and dr offices for 7 mo trying to deal with my endo pain.
      I FINALLY got in to see s specialist and he is amazing!
      He put me on LUPRON and I haven’t had any pain in a week!!! And this is coming from pain almost every day for 2 mo straight and on and off before that!!! 2 MONTHS OF PAIN EVERYDAY
      I was placed on bed rest, I was bleeding BAD and hating my life!
      We all know the mind, body, and soul ripping pain!

      ITS GONE!
      It
      Is
      Gone!!

      I hope it stays this way!

      Down side, I have muscle cramps in my back on the right side ( same side as my major endo pain)
      But it’s not constant and the dr said it wil level out when my body adjusts to the meds!!

      Seriously girls, I have been trying all kinds of homeopathic remedies, and anything the Drs suggested,
      NOTHING
      Has helped like this!
      I am very happy, pain free (minus the muscle ache) and I STRONGLY urge you ladies to ask your gyno about LUPRON!!!!
      -Tara

  12. The systems that have been diagnosed is what I’m suffering with but I don’t understand if I have it cause I had operation about 4 years ago I had something burnt to stop the bleeding and only just started the bleeding and I’m so much pain and I have drank a lot of wine lately

  13. Joanne Walker

    Hi my name is Joanne and Im 25. its been almost a month since Im having this crazy pain its like something is ripping something in my pelvic area the pain start when im walking, sitting and get up or just active and then stays for days and it goes away but its start all over again. i have a 2 year old daughter and since shes born I have been in the DEPO so I have no periods but since this been happening I been having like periods pain, lower back pain and the doctors have not find anything I dont have any cyst or infections or anything like that so I dont know but this pain is driving me crazy is so annoying I dont know what to do.

  14. Tammy

    I have always had bad cycles. I started my menstrual cycle at the age of 9 years old. I have read many articles saying your peroids should only last 3-7 days, ha.ha. I could only wish they were that short. Finally after years of pain I had an ablation. It did lessen my peroids to 7-10 days sometimes 12. But my right ovary ( every month) feels like someone is squeezing it until I think it will bust. Pain is so bad I can’t get out of bed. I to have pain ( bruised) feeling in my bottom. Oh yeah and the pain of having a bowl movement while on my peroids is unbearable. Sometimes I think I will passout on the pot. Lately my kneees feel as if all my energy has been sucked out through them, I rub muscle rub on them they throb. No one should have to endure this pain. Most men think we are being dramatic. I am only 38yrs old and would hate to have a hysterectomy but at this point its my only option. The one thing that has always eased the pain is hot bath. To bad I can’t take a tub to work. Now both my daughters have been diagnosed with PCOS and Endometriosis.

  15. Jennifer

    I had a partial hysterectomy 3 years ago removing a lot of endometriosis along with uterine fibroids. For the past year i have started having more symptoms that point to my endometriosis being back, especially the past six months. Pain is so severe it spreads from my groin to my lower back and hips. I walk with a limp at times, i can’t sleep, it hurts to sit for long periods of time.
    My surgeon moved so i have not been back to the doctor, mainly because my deductible is so high.. i eat NSAID’s and that doesn’t help much. I am going to try Evening Primrose Oil to see if that helps.
    I am single and 38 years old! I hate going through this! I feel like an old woman, I can’t get out and enjoy life because of the constant pain. I have so many things i want to do, so many hobbies and a 5 year old son that loves to keep me on my toes. By the end of the day i am in tears! I feel like i can’t even get a date.. and i am a very pretty woman! But how do you explain this to people?
    I do have to say the hysterectomy was the best thing i have ever done though! I felt like a million dollars afterwards… at least until now.

  16. Ntombo

    Dear Doctor

    I am a lady of 30year. I sometimes just randomly get electrical strike on my abdominal or womb like lightning. It comes just strikes from vigina to abdominal part of my stomach. I dont knw where i shud visit gneacologist or normal doctor.

  17. Pingback: Emotional Pain | endo[me]triosis

  18. I’ve always had irregular periods and with those come painful cramps in my back, lower abdominal and a more embarrassing part, the anus. Recently though, I’ve been feeling that somethings just not right.

    I can’t seem to find the strength at the gym I used to have, I’m tired, moody, nauseated, my stomach feels like I’ve been poisoned but I can’t throw up no matter how sick I feel. I fainted one morning or almost had a hard fall. Thank God my boyfriend arrived at the right time and caught me before I hit the floor. I was shaking and heating up.

    I had a Pap smear and uterus test which came back clear. The doctor suggested that I get an ultra sound and blood work as I have symptoms of fibroids and/or cysts. After checking online, I have more the symptoms of endometriosis and still waiting to get an appointment with my doctor. I called to set kne up explaining my pain and symptom but they just won’t take me seriously as an urgent care patient. They told me to wait but I don’t think I can anymore.

    I feel unmotivated to do anything and I don’t want to socialise which are two things opposites to my normal self.

    As I write this now, I keep getting waves of sharp pain in my abdominal area all the way down and over to my anus and lower back. Earlier this morning, the pain was so bad and going down my leg through my hip and into my thigh muscle.

    I’m usually not bad at handling pain but all of this with fainting, nausea, migraines and just fatigue are getting the best of me. I still try to get out and try to distract myself but the pain hits me in the middle of walking or anything and I have to pause and take a lot of deep breaths.

    I feel the pain of every woman going through this and I hope you feel better. I am yet to figure out exactly what is wrong with me.

  19. Catherine Pyakawa Tendee Anoruo

    Everything here was so helpful,because my case is unexplainable.Worse than labour pain. I have faith, I will come out of it soon, my lap is coming up next month. This pain has made me feel like I have no life with my husband. Everything is possible with God.

  20. Catherine Pyakawa TendeeA Anoruo

    We are all in this together. Let’s keep fighting we will one day get out of this.

  21. Gill

    My diagnosed endometriosis is causing me great problems at the moment despite having had a hysterectomy and my right ovary removed. The problem now is from my left ovary. I have been in pain now for twelve days with only a couple of pain free hours x my high dose painkillers don’t work. I am having an injection today to shut down my ovary.

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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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