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8 Women with Endometriosis Describe What It Feels Like

“Endometriosis pain is like a gut-wrenching bomb that goes off in your insides.”

Endometriosis is one of the most commonly misdiagnosed and misunderstood conditions—despite the fact that it affects an astounding one in 10 women between the ages of 15 and 44, according to the U.S. Office on Women’s Health.

Part of the problem is that endometriosis is commonly confused for bad menstrual cramps. Many women muscle through their pain, assuming it’s normal; those who seek out the help of a doctor are not always taken seriously or given an accurate diagnosis.

Getting the word out on endometriosis symptoms—described by the women who experience them—is vital for empowering women to recognize their symptoms and advocate for themselves in the doctor’s office. Here’s exactly what endo feels like, according to eight women who experience it on an almost daily basis.  

The Pain Is Nearly Constant

“For me, the pain feels like I’m being prodded with a searing hot stick—like what they use to brand cows with, constantly and relentlessly. It’s the kind of pain that overcomes you from the second you open your eyes in the morning until the second you close them at night, and usually, somehow, even after that.”

—Orla D., age 27

Expensive Surgeries Are Common

“I’d describe the quality of pain as sharp. It’s deep, searing, and uniform. It feels like menstrual cramps dialed up to a 9. It’s been extremely debilitating, to the point of spending $10k on the second surgery in California with a specialist who was aggressive about removing large margins of the affected endometrial tissue—all out-of-pocket.”

—Maleah J., age 50

The Pain Is More Than Physical

“As a practitioner, I describe endometriosis pain [as] sharp, stabbing, achey, twisting, or burning, and it may or may not correlate with your period … As a patient, I would [add that] endometriosis pain is like a gut-wrenching bomb that goes off in your insides. Its shrapnel tortures you physically, emotionally, and financially forever.”

—Dr. Sallie Sarrel, PT, ATC, DPT, pelvic physical therapist and endometriosis advocate in New York and New Jersey

Your Bathroom Habits Might Be Affected

“Many women suffer from lesions of endometriosis near their bowels or in areas that make bowel movements sensitive. In my experience, during my cycle it would hurt so intensely to go to the bathroom that sometimes I would try to avoid it.”

—Amanda L., age 33

It Can Affect Your Social Life

“Endo is extremely debilitating, life-changing, and isolating. The pain is so severe even meditation doesn’t help.”

—Jess M., age 29

Even Your Clothing Choices Are Affected

“The day-to-day pain can be described as sharp, shooting abdomen pains, paired with period cramps. My belly would become bloated and I would bleed very heavily, large blood clots, even when not on my period for days. Seeing these blood clots made me very weak. Also, wearing jeans or anything that pressed into my lower abdomen was out of the question due to the pain the pressure would cause.”

—Tara L., age 34

Depression Is Common

“I have period cramps three weeks a month, [and] it makes me tired and depressed. It limits my life [because] I don’t have as much energy as I used to, and I’ve gained weight. I don’t want to appear as lazy or moody, but my mind feels constantly cloudy and it’s hard to pretend to be happy.”

—Jennifer C., age 33

The Pain Isn’t Always the Same

“The endometriosis has left me constantly in pain. Sometimes it is a dull, lingering pain, and other times it is a sharp, shooting pain through my lower abdomen. It causes me fatigue, extremely painful bloating, fever, irregular periods, pain with intercourse, and so much more.”

—Brianna F., age 27

If you suspect endometriosis, don’t hesitate to talk to your ob-gyn or primary care doctor. (Psst … Here are other possible reasons your period is painful, and here are other reasons your period is heavier than usual.)

 

Duration: 1:26. Last Updated On: June 24, 2019, 12:45 p.m.
Reviewed by: Preeti Parikh, MD . Review date: June 20, 2019
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