What Does Endometriosis Feel Like?

What Does Endometriosis Feel Like?

Shireen Hand Endometriosis My Life With You


It’s difficult to describe pain. When we talk to our doctors, we usually try to describe pain with words like “sharp” or “dull,” or by using a pain scale from one to 10. I’ve never felt I’ve been able to fully convey how endometriosis
actually feels, and I’m often left with the sense that others think it’s not as bad as we are making it out to be, especially since the pain is invisible.

I often see women asking what endometriosis feels like because they think they might have it. There are many similarities between endometriosis pain and the pain that a woman would feel during her period, which I think is why endometriosis is commonly mistaken for a “bad period.”

So, what does endometriosis feel like? Endometriosis pain can vary from day to day (even hour to hour!), and it’s different for every woman. Some feel pain constantly, whereas others might only be in pain around the time of their period. As someone who has lived with endometriosis for 22 years, this is what it feels like for me:

Abdominal pain

Abdominal pain is the most common symptom of endometriosis. For me, this pain varies in strength and type. Some pains can come and go, whereas others will affect me for days afterward.

Leading up to and when I am on my period, I get a dull, low ache around my ovaries. My tummy begins to feel heavy and empty, and the pain lightly burns. When my period is heavy, my pain is often at its worst. This pain leaves me doubled up, unable to move. You will often find me curled up in a tight ball on the floor. It shoots through me like an electrical shock — burning. It can feel like contractions, or “tightenings” with intense pain, coming and going every few minutes.

Endometriosis also causes sporadic pains. Sometimes these pains ache away for days on end but, other times, they will take my breath away with how sharp and sudden they are. For no apparent reason, my tummy can swell and become hard. When this happens, it feels like everything inside swells and fights for space. I also get pain caused by my bladder or bowels. When they are full, they press on areas of endometriosis, and this leads to pain when I need to go to the toilet. I have screamed with the pain of urinating. Sometimes it has felt like I am tearing in half. When I need to empty my bowels, it feels like I have a red-hot poker stuck in there.

Leg pain

I never get leg pain on its own. My tummy will always ache, and then it feels like the pain radiates outward, down into my legs. They ache deep inside. If only one side of my tummy is hurting, I will only get leg pain on that same side.

Endometriosis can also affect the sciatic nerve. With this, I feel a sharp, burning pain deep in my buttocks that then radiates down the back of my leg.

Back pain

I get severe back pain, which is not helped by an accident I had years ago. Endometriosis only exacerbates this. When my tummy aches, my lower back aches and burns. It feels like it hasn’t been stretched out in a long while.

Shoulder, neck, and chest pain

Not every endometriosis sufferer will experience pain in the shoulder and chest area. It is a symptom of endometriosis on the diaphragm, which is thought to only affect up to 1.5 percent of women with the disease. For me, this pain starts around my right shoulder blade, runs up the side of my neck and down my arm. The best way to describe this pain is by likening it to a toothache. It is a dull, nagging ache that makes me feel nauseous. I find poking my fingers into my shoulder muscles soothes it momentarily, much like poking your tongue into your aching gum.

The chest pains do not affect my breathing as such, but rather the muscles in my chest, which in turn makes it difficult to take in deep enough breaths. The pains feel sharp and shoot outward, making me clutch at my chest.

Vaginal pain

Pain felt during sex (dyspareunia) won’t be a problem for everyone, but it is a common complaint. For me, it can feel like sandpaper getting rubbed inside me, and I get sharp pains that travel upward into my abdomen. More often than not, it will immediately reduce me to tears. This pain can affect me for days afterward.

What does your endometriosis feel like?

You can follow more of my journey over at www.emlwy.com.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

5 comments

  1. Stacey says:

    It’s dull, sharp, burning pain that radiates every where in my body. My insides feel like they are wrapped in barbed wire, being twisted and set on fire… and it never ends.

  2. Lisa says:

    This describes almost ALL of my pain except for what I call ‘stabbies’ but this is most likely attributed to cysts. I get hot-poker like stabbies throughout my abdomen (worse during period week).

    Thanks for the article. Helps to know that I’m not a hypochondriac as some believe even though I’ve been lap diagnosed.

    My pain is constant, yet random, with different degrees of intensity and specificity…and mostly what you describe here.

  3. Lisa Rudolph says:

    I’m a endo patient, been one for 21 years. The pain sometimes are over whelming, its strange how the consistence of this pain starts to weight in on your mind. It sometimes make you feel like your in the valley no one understand or hear your cry. But you know that you have to get up and go on. But all that was stated about endo is true I’ve had all the symptoms except the bladder problems and the Thoracic endometriosis hopefully I want get it, but with my luck I don’t know.

  4. Tara says:

    Endometriosis. The most painful life sucking debilitating disease. I am lucky enough to have 6 children and was diagnosed stage 4 at age 34. I self diagnosed myself by doing online research to why I felt like I was pooping knives. My gyno did a lap and found it all over. I had it removed and 6 months later it came back full force. i just had 4 months ago a uterine ablation to lighten my periods and my tubes removed. I don’t get heavy periods as to now, or cramps but the pain in my lower back and my bowels and bladder near my cycle is extremely painful. I am tired all the time. I have a high pain tolerance and I can’t take it anymore. I feel like i am complaining all the time. Wishing for a cure….

  5. Melissa Mcnamara says:

    I have not yet been diagnosed with Endometriosis but I have had debilitating pain for the last 8yrs now, the pain started out of no where 8yrs ago and started off as a strange dull ache in my abdomen and over time the pain has gotten worse radiating through out my abdomen and my lower back, I am in and out of hot baths to try and get comfort and it works but only for a short amount of time over the last 12 months I have been experiencing pain into my legs and my hips. I am lucky if i can open my bowels twice a week and some weeks i cant go at all most of my pain is all located on my right side and ive previously had my Appendix out so i know its not them. back in 2014 i had a partial Hysterectomy where only my uterus was removed and i was diagnosed with Endomoyosis what i don’t understand is that if i did in fact have Endometriosis why did the camera not see this then my GP explained to me that it can in fact be missed even by having Endoscopy Surgery so my next question is how will they find this if i do have it, ive had every scan you can think of done apart from an MRI even my Colonoscopy didn’t show anything, i do get stabbing like pain through the walls of my Vagina and a lot of stinging and discomfort up in there, my GP recently did a Vaginal swab and my routine papsmear and all was really good after all the reading i have been doing im sure this is what i have my appointment with a Gynocoligist is in July currently i am single so i cant say weather or not im affected as im not sexually active and haven’t been in some time now im just hoping that an answer to this pain is found soon as im a little tired of being told that its in my head and the Nepean Hospital Chronic pain department having me talk to Cycologists and trying to put me on depression meds to correct my brain its a joke i know my own body and something isn’t right here you cant imagine this pain im in i cant just think it up its absolutely debilitating and its every day all day and some nights i don’t even sleep its that bad. this was a long comment and i appreciated reading the other ladies comments on here as it has shed some light for me too so thankyou to them im no longer seeing the Hospital as they were making me worse and more upset and depressed so im much better dealing with this crippling pain myself.

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