The truth about endometriosis and women’s pain

As an actress, I fearlessly audition and perform on stage. I feel absolutely no shame posting a YouTube video of myself playing my autoharp and am comfortable rattling off garbage about my life on Twitter. There’s something different about writing about a disease I have, though — a disease that I didn’t even know existed a few years ago. But here it goes.

I knew something was wrong with my insides the first time I ever got my period. The week before ol’ Mother Nature really laid it on me, I was having cramps that felt like someone was crushing my insides into a misshapen pile of plastic shards. I began to grit my teeth so hard to distract myself from the pain that my molars made little squeaks whenever my bite slipped. When friends of mine would discuss their period cramps, I never felt comfortable enough to say, “Oh yes, my cramps were so bad that I spent most of last night curled up in the fetal position with bags of frozen peas on my sides!”

“You’ll get used to it,” I told myself. “Everyone in the movies says that periods make you feel like you’re dying. This is probably on par.” I went on birth control in middle school and spent years altering, raising, and lowering the doses I was on to try to lessen my pain and stop excessive bleeding. It never worked. I worried I was just weaker than everyone else. I told myself I was overreacting, that I just wasn’t used to being a woman — and being a woman meant dealing with this excruciating pain. That excruciating pain was normal.

I developed a deep hatred for my body; I felt chronically unattractive and believed I was broken and would be forever. Sex hurt. Not just the first time, but every time. I figured it was just a side effect of being a broken girl. Maybe I just didn’t enjoy being physical, I figured. I blamed myself for stopping myself from enjoying sex.

The pain began to take over my everyday life in my freshman and sophomore years of college. My college education should have been sponsored by Advil and Kotex. I fell down a number of Google rabbit holes looking for answers — Am I dying? Am I suffering from every STD in the universe rolled together in one? — before I started going to my university’s health center. The doctors there began testing me for everything under the sun, but each new test came back negative. They gave me different medications for different possible diagnoses, but nothing worked. On something like my tenth visit to the women’s health center, a nurse sat me down and told me that I should just go to the university’s counseling center because it appeared that nothing was wrong with me. The nurse told me it was probably all in my head and that I was probably just suffering from severe anxiety.

A few months of the “suck it up” mentality later, I found myself vomiting from pain and nearly unable to move. The only option I felt I had left was to cut my class and fly home where at least my parents could take care of me. They took me to pretty much every OBGYN in Cleveland, my hometown, as well as some urologists. One very perceptive gyno finally pinpointed the correct tests to give me, and I was diagnosed with endometriosis. The pain, bleeding, and horror I had been dealing with was caused by all of the endometrial tissue that had formed outside of my uterus, creating incredibly painful lesions. The lesions can spread all over the pelvic region and even stretch far beyond, latching to your diaphragm, kidneys, and lungs.

Finally learning what had caused all of my ailments was comforting in a way; picturing what was crunching up my body and gnawing at my soul was strangely helpful. But one year out of college, I am still very much in the middle of my journey of trying different injections, pills, and holistic practices to alleviate my symptoms. It’s been fun (nope), but after all of the shots in my ass and metal tools in my uterus, I believe I’m reaching at least some sort of livable equilibrium.

It’s hard to compare your endometriosis journey to anyone else’s. I have friends who found the right birth control and haven’t had any endometriosis symptoms since. I also have friends who have been treated with laparoscopic surgeries time and time again in an attempt to just ease the pain, though the cysts will grow back.

I recognize that discussing any intimate health topic (or vaginas in general) makes some people uncomfortable. But any worry I have about making people uncomfortable is overshadowed by my desire to advocate for all of the ladies I know suffering from endometriosis and to provide the information and insight I wish I had found years ago. So ladies: If something feels wrong, seek medical help. Don’t assume pain is your fault or just something you have to deal with. Communicate with your loved ones: your partner, your friends, and your parents (yes, I know it’s awkward). Build yourself a support system. Not all treatments are kind. Not all treatments are effective. It sometimes may feel like you’re losing the battle. Don’t stop fighting. Talk about it, scream about it, maybe become a super-genius chemist and cure it (please)! But know you are not alone.