I Live with Endometriosis and This Is What It Feels Like

It's more than just a bad period. Endometriosis is a chronic and painful disease that targets 1 in 10 women. I have it—let me tell you what it feels like.

Emily CappielloCourtesy Emily CappielloIt’s 2 a.m., and I’m awake with intense cramping. Well, the term cramping doesn’t really do this pain justice: It feels like someone is turning my ovaries like they’re doorknobs while Wolverine sticks his claws into my lower back.

I curl up in a fetal position, trying to fall back to sleep. I need to be sharp and focused at work, tomorrow; but eventually I realize there is no way this pain is going to let me sleep tonight. I slip into the bathroom, turn the water on as hot as it will go, pop three pain pills, and lay in the tub until the pain eases so I can head back to bed.

I have endometriosis, and this is a completely normal monthly experience for me.

“Endometriosis, when tissue that normally grows inside a woman’s uterus grows outside the uterus, affects one in ten reproductive-aged women,” associate professor Louise Hull, PhD, part of the Endometriosis Research Group at the University of Adelaide, said in a press release regarding one of her studies on endometriosis. “The symptoms vary but include painful periods, pelvic pain; women with endometriosis may have difficulty conceiving.”

I first knew something wasn’t right when I was a teenager. Although I have a high tolerance for pain (according to my doctors and dentists), I was horribly sick and in a constant state of pain during my heavy periods. It got to the point where I was swallowing too many pain pills to function.

At the time, my doctor diagnosed me with a clinical type of extreme periods called dysmenorrhea. That was wrong, but I can’t blame him because the diagnosis is harder when a woman is in the early stages of endometriosis. I went on a birth control pill and that was that. My symptoms improved slightly, though the pain was still an eight out of 10.

A few years later, I was researching reasons why a person would have a hard time losing weight and discovered that endometriosis is one explanation. As I kept reading about the condition, I realized I needed to bring up the possibility of endometriosis with my doctor. I had so many of the symptoms beyond a painful period, such as severe bloating and constipation. Some days my stomach was so swollen I couldn’t button pants that fit perfectly the night before.

My delay in getting a diagnosis is common—from the onset of symptoms, it takes nearly nine years on average, according to several studies. Research from Monash University suggests women are most often diagnosed when they’re trying to get pregnant, because the condition can impact fertility. The symptoms of endometriosis are not always obvious; painful menstruation is just one of them.

In the last few years, I’ve learned a lot about how to manage the pain. I’ve changed my diet and reduced or eliminated dairy, sugar, and flour. “Comfort food” has a completely different meaning for me now; a sweet potato soothes my pain better than a box of chocolates.

Another thing I’ve learned is to keep exercising. I used to lie in bed when the pain hit, but now I know that exercise will help me push through. I may not go as hard in spin class and I may choose yoga over treadmill running, but it really helps to move. Here are an additional 15 things no one tells you about endometriosis.

Finally, I also found a birth control pill that helps ease my symptoms. I went through four different types—and their side effects—before I found one that really worked for me. The most important thing I’ve learned is that I have to listen to my body: With persistence and a sympathetic doctor, I was able to find answers to endometriosis. Read on to learn why you should still see your GYN every year, even if you don’t always need a pap.

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