In March’s Vogue, Lena Dunham revealed that after her decade-long struggle with endometriosis, she had an elective hysterectomy. The procedure was the Girls creator’s final attempt at alleviating the “excruciating pain” caused by the chronic disorder, which affects the lining of the uterus. Though she’d undergone eight previous surgeries, journalists and bloggers responded to her essay with hostility, calling the 31 year old’s decision “extreme” and questioning whether she’d been well-informed of her treatment options.
The backlash doesn’t surprise me. That dismissive tone is the same I got 12 years ago, when I first experienced crippling pelvic pain.
As I sat in the library during my freshman year at Sarah Lawrence, I was hit with a sharp, shooting sensation above my left hip. I thought it was cramps, but as time passed, I noticed a pattern of strange symptoms. My period came every two weeks. Sex was awkward and difficult; if I hit the wrong position it felt like I was being stabbed. The ache echoed in my abdomen for days.
A Westchester gynecologist diagnosed it as a bacterial infection. He gave me a script for antibiotics, but they didn’t help. Another OBGYN said it was allergies and suggested lambskin condoms. Then the pain spread to my bowels. Fatigued, I slept late into the afternoon. My first semester, I’d missed so many classes I had to drop half my course load.
I was from an Evangelical family in Laredo, Texas, and talking to middle-aged male doctors about my sex life felt humiliating. Yet as weeks turned into months, I felt desperate. Finally, over spring break, I saw a Gastroenterologist my parents knew, thinking a family friend would take me seriously. During the rectal exam, he blamed the painful sex on promiscuity. I left his office in tears with nothing but a recommendation for high-fiber breakfast cereal.
Incensed, I got home and Googled “ovary pain.” That led me to a forum for women who, like me, had been through the medical gauntlet: countless doctors, misdiagnoses, and ineffective medications. That forum led me to Dr. Iris Orbuch, an NYC-based specialist. In our first appointment, she sat and spoke with me about my symptoms for a half hour. After a short physical exam, she pinpointed the source of my discomfort: she suspected I, like Lena, had scar tissue buried deep within my pelvis.
My experience isn’t unique. According to the Endometriosis Foundation of America, an estimated 175 million women suffer from the disease worldwide. Most see an average of eight doctors over ten years before diagnosis. However, we are often told our suffering isn’t real—to buck up and take a Midol.
Treatments range from hormone therapy to surgery, and, in some instances, hysterectomy. The latter is usually reserved for women past reproductive age. In Lena’s circumstance, birth control and regular surgery weren’t sufficient. I was lucky in that my case was caught early on. A laparoscopy to remove the scar tissue was enough. Still, the choice wasn’t easy: My insurance wouldn’t cover the procedure, so my parents had to fly up from Texas and pay thousands out of pocket. Even then, my doctor couldn’t diagnose me until she opened me up. In the end, the procedure confirmed what we’d suspected: lesions irritating my bowel and pelvis—endometriosis.
Women’s reproductive health seems to bring out everyone’s biases. My doctor in Laredo told me I was promiscuous. Journalists intimated that Dunham was, essentially, hysterical or uninformed. Instead of judging women’s choices, we should set our agendas aside and empower them to make informed decisions, especially around an illness as frequently misdiagnosed as endometriosis. If I hadn’t advocated for myself, I could have become infertile. I was 19.