What Does Endometriosis Pain Feel Like?

Thanks to endo sister Angela Bivens for sharing the following blog on facebook:

For The (Non) Endo Girls : What Does Endometriosis Pain Feel Like?
by Kelle O’Connell
August 21, 2013

Endometriosis is a condition that occurs when the lining of a woman’s uterus grows in places outside of the womb causing chronic pain, internal bleeding, and often infertility.
The average time it takes for a woman to receive an accurate endo diagnosis is 10 years.
I share about this on my blog in hopes of raising awareness, decreasing that average diagnosis time, and providing a small resource for my “endo-sisters” out there.

I’ve tried for a long time to find a way to explain how endometriosis physically feels, to someone who doesn’t have it.

It’s not a question that I receive often, but since we harp so much on the fact that it’s different than cramps, I feel that us endo-girls kind of owe the rest of you an explanation as to what it does feel like, you know?

Many women with endometriosis associate their pain with the term “flare up.” I think most times, this is referring to the severe pain. Not the daily pain that many women deal with, but the times when it gets really bad. The Emergency Room times. The Percocet times. The how-the-hell-am-I-supposed-to-get-out-of-this-bed times.

I posed the question to an endometriosis Facebook group and received some helpful and honest answers. Keeping in mind that every woman is different, some may find several or all of these to be true in their case, some may not relate to any of them. But these were the most common answers.

What does an Endometriosis flare-up feel like?

It feels like someone is grabbing your insides and twisting them as tightly as they can. Like the “rug burns” that children give each other on the playground by twisting the skin on their arms, but inside of your pelvis and abdomen.

Like recurring, nonstop, appendicitis. Many women with endometriosis are actually misdiagnosed with appendicitis! I never had it, but I’ve been checked for it via ultrasound multiple times in the ER when I’ve gone in with endo pain. I heard from several ladies who have experienced both and said that endometriosis is similar or worse. Even one whose “appendix almost ruptured due to [her] high pain tolerance from endo.” Yikes, girl!

Like a dull knife making quick jabs into your abdomen repetitively for days.

It feels like your body and insides are entirely bruised. Like your legs, hips, back, and stomach have all been punched repeatedly. Like pushing on a sprain or digging your thumb into a fresh, deep bruise.

It feels like the worst food poisoning you can imagine. Your muscles are tight, you’re nauseous, dizzy, and there is an uncontrollable, sharp, pain in your stomach.

Like a large hot iron, being prodded at your insides every few minutes. And even when the iron gets pulled away, there’s a lingering pain from the burn.

There are many opinions about comparing endometriosis to labor pains, by the women who are lucky enough to experience both. (Endo is one of the leading causes of female infertility) More often than not, I hear that the pain is similar, but some mamas argue that endo is worse. I heard from two mothers :

“When I had my daughter, early labor and transition labor felt identical to endo pain.”

“I had very long and difficult labor with my first born (almost 10 lbs)….
Giving birth without epidural twice, I can say that for me endo is
much, much worse than giving birth without epidural.”

It’s throbbing. Aching. Ringing in your ears. An entire body feeling overheated, but in need of heat at the same time.

It is a relentless pain. Sharp and then dull. It teases with previews of what is to come, then magnifies your pain to points you didn’t know a person could tolerate until you had no other option.

I’m sure words can only do it so much justice.

We black out. We faint. We vomit. The room spins. For hours on end. For days in a row. And it leaves only to come back again. And we know it will be back again. Every time, we know.

And that’s why endometriosis feels like hell. Sometimes, it feels like wasting life away. Sometimes it feels like failure. Like jealousy. Bitter, isolated, and misunderstood.

Sometimes the physical pain is the least painful part, actually.

For many women with endo, and in my particular case, daily life consists of a dull discomfort. Exhaustion, nausea, aching muscles, twinges of pain in the abdomen – like a dark reminder not to get too comfortable.

And for other women, there’s none of this. Just because the pain isn’t as regular or as severe as other girls may describe it, doesn’t mean it isn’t endo. It very well could be. It’s really important to remember that everyone’s symptoms are different.

And yeah, okay.
I guess maybe sometimes it does feel like cramps.
But we call those our “good days”. 😉