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:
- Managing with pain that may never leave you
- Having an illness with no cure
- Feeling weighed down by a lack of understanding or awareness
- Realising the ability to have children may be negatively effected
- Struggling with chronic fatigue and its ongoing effect on the body
- Relearning your limits, being unable to do things you once enjoyed or having to do them less often
- Having your key relationships and friendships affected by the disease
- Being unable or finding it difficult to work
- Living with an invisible illness that few can visibly recognise.
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.
Endohope 
I’ve had endometriosis for twenty years. I’ve had many medications and surgeries nine of which lasted unfortunately. I was very lucky to not have my fertility effected and have three children. My pregnancies were very difficult and I then was diagnosed with adenomyosis after having my last child by c-section. I decided to fight for a hysterectomy at 33. I knew it wasn’t a cure but hoped would make it more manageable. The endo is now everywhere including my bladder, bowel, kidney, sciatic nerves and hysterectomy site. I have been on zoladex for 2 years this time and it’s no longer working. I’m so fatigued that I miss appointments, I can’t work so am struggling financially, I’m getting divorced and my ability to care for my children is severely effected. They are reluctant to operate again because it will be the tenth time and adhesions are a major concern. So now codeine and morphine are my options until something new comes up. I’ve always been able to muddle through knowing it would get better. Now it isn’t and I am out of options.
Jess I hear you. I’m so sorry you are going through this and I hope you have gotten some relief since you posted this. I too have endometriosis and found out I had adenomyosis from MRI. I too recently had a hysterectomy (I’m 38). I knew it wasn’t a cure but hoped it would help. I think I have adhesions in abdomen (or endo still) which started about 3 months post-op. I’m trying chinese acupuncture and same guy is trying to break up fascia in that area (painful to get done but think it might be worth a try. Just please know you are not alone in this. It consumes me most everyday and I try to get through the day and feel blessed when I get a pinch of relief even when its short lasting. Nobody would know what we go through daily and I hope no one ever has to. I really feel stress exacerbates this disease and I’m still trying to find ways to make sure I’m rested and reduce stress if possible. I will pray for you.
Is this pain everyday or only during pms? Should I ignore it if it’s only during my pms and just keep treating with pain killers? I’m confused
I have had ‘stage 4’ endometriosis since 1991, and every medical ‘procedure’ i have had done has made things a lot worse. I went in for a laparoscopy in 2003 after my right ovary was protruding from my abdomen, the size of a softball, and woke up with the ovary gone and the doctor trying to give me hormones that I specifically said I didn’t want. Then Lupron caused me to go into menopause at age 26, which was horrible. Finally, my PCP began treating my pain with opioids that really worked. I could get up and go surfing like I used to as a teen again. After all the hype about opioids, the AMA doesn’t consider the number of chronic pain sufferers who really need them to function. i have tried every endo diet out there, every hormone available (14 in all with awful side effects), and have been to 29 ob-gyns. None of them helped me except one who worked with a nutritionist from Korea. I was diagnosed with candida and the treatment of taking nystatin with diflucan for a month really cleared it up. I just don’t eat bread anymore and it doesn’t come back. Now am going through perimenopause symptoms and the pain is unbearable without opioids. I bulk up on them when I have ‘ghost periods’ and horrid lower back pain from bowel endo. Remember that there is no medical cure for this disease and that doctors who only go by the book won’t help the condition.
Knowing the general symptoms as well as the fact that it’s different for different people can help people recognize the possibility that they have endometriosis and get help. But yep, Jess and Margrath seem to represent opposite ends of the spectrum between moderate pain during pms and a multi-decade struggle that defies common treatments.
Hello Michelle,
Thank you for this blog and some personal experience on your end. I haven’t been officially diagnosed yet but I am certain the pain and symtpoms I deal with is Endometriosis! My obgyn has sent me to a gastrologist and for all sorts of other tests (which check out fine) but has never recommended the laparoscopy. Did you seek out a specialist for that or did your obgyn move forward with that test/surgery?
Any insight would be helpful! Thank you!
-Ashley S.
Hi
Search for a specialist in endo please don’t go to a regular gynaecologist I have seen that many , they don’t listen to you they will try anything to pass you around fobbing you off . Have you joined Nancy Nook on face book . I payed to see a specialist then the op was done on the NHS as he did treatment on NSH and privately and I got in quicker .
Hope this helps
OMG!!! I’m literally in tears right now. I’m 37 4kids and all my life has been a painful battle. From painful periods, pregnancy stopped having intercourse it hurts so bad to losing jobs not being able to proceed with everyday life. I’ve suffered rectal pain only to be sent home from numerous ER visits and doctors visits like I’m making this stuff up. Being told so many different things are wrong with me to it’s just being a woman and deal with it. Many times the pain and emotional damage was so bad I thought of ending my life!! This article has revealed what’s been my problem all my life. Now I know how and where to get treatment. Thank you guys so much you’ve changed my life as well as my family.
Hi Keiauna isn’t it insane that we are passed off as being hypochondriacs? I’ve too have suffered with Endometriosis since I started my periods at age 12 I was told it’s normal. I didn’t conceive for 8 years of trying I finally had 2 boys one of the labors I almost hemorrhaged to death! It was awful it all made sense when I finally got diagnosed from a specialist dr in San Francisco everyone other dr I saw wanted to do a hysterectomy but she actually knew that wasn’t a cure, there’s no cure just pain management. I too have worked many jobs because of being sick every month to feeling fatigued. I know what you’ve experienced I understand you sending 🤗 hugs.