(Photo Courtesy By: Kyung Jeon)

This Is What Endometriosis Really Feels Like

February 8, 2016

Despite it being one of the most common gynecologic diseases, a leading cause of infertility, and debilitatingly painful, endometriosis isn’t a very popular topic of conversation.

The condition, estimated to affect around 5 million American women, typically causes painful periods, an experience too many women keep mum about because we’ve been convinced even killer cramps are just a fact of life. Staying silent about endo experiences, though, only perpetuates the problem: Women who don’t know about it don’t know to discuss their symptoms with their doctors and continue to suffer in agonizing silence. (Want to pick up some healthier habits? Sign up to get daily healthy living tips delivered straight to your inbox!)

Endometriosis happens when tissue that would usually grow inside the uterus instead grows outside of it, commonly on the ovaries, bowel, bladder, and elsewhere throughout the pelvic cavity. Because it’s uterine tissue, it also bleeds monthly, but the body is unable to clear away this blood, leading to swelling, inflammation, and continued growth of the tissue, often forming cysts. There’s little we know for sure about how or why this starts, but it can begin as early as a girl’s very first period.

That was the case for actress Lena Dunham, who knew something was off from the very beginning of her menstruating life, as she wrote recently in her newsletter Lenny Letter:

“The stomachaches began quickly and were more severe than the mild-irritant cramps seemed to be for the blonde women in pink-hued Midol commercials. During the worst of it, my father brought me to the ER, where they prodded my appendix and suggested it might be food poisoning and that we should go home and wait it out. My mother placed a pillow under my lower back, and I moaned in the guest room, where no one could hear me, my legs spread like a woman in labor.”

It’s a stomach-churning account, one that triggers sickly feelings as you imagine sisters, mothers, friends, and coworkers who are trying to convince themselves each month that everything is just fine. Endometriosis pain—as you will hear from the women below—is definitely not normal. Here’s how it really feels, in their own words.

(Photo Courtesy By: Kyung Jeon)

“My symptoms started as soon as I began menstruating at age 11. The easiest way I’ve been able to personify the pain is it’s like someone is crushing your ovaries and uterus with giant hands. The pain would get more and more severe as the day would go on, radiating down to my thighs. I’d be on the couch writhing back and forth clutching a heating pad. I would be in so much pain I would have to cancel plans, stay home from school, or would end up in the nurse’s office. In high school, one of my friends accidentally ran over my foot with his car and broke it in four places. My period pain was worse than that. When pain from your period interferes with your life, when you schedule your life around your period, that’s not something we should just accept. Don’t take people telling you, ‘Oh, you’re fine,’ when you know you’re not fine. You know your body better than anyone else.”
—Tracy Lytwyn Fischer, 25, who lives in Carmel, IN, and works in communications for a nonprofit. She blogs about her experience with endometriosis at StillSunflowers.com.