Since her symptoms began, Karen (not her real name) underwent a series of tests and treatments that may have felt less invasive had she been properly diagnosed: two biopsies, three yeast cultures, two full STD lab tests, douching with yogurt, and a two-week treatment of Boric Acid, among others. She’d been misdiagnosed or brushed off by nearly 10 doctors during the past seven months, the result of which led her to the Internet to find women who had similar symptoms: burning, itching, swelling, and redness of the vulva.
“There wasn’t a day that went by that I wasn’t reading about it. Just to know that I wasn’t alone. I was really frustrated. Again and again, I kept seeing words that were ridiculous because they obviously have no real diagnosis. Vaginismus, vulvar vestibulitis, vulvodynia. … All these women kept saying the same thing, ‘I tried all these things and it didn’t help.'”
Never in her life had she experienced anything like this. She loved having sex. She loved her body. Yet now the 26-year-old Emory grad student would lay on her futon with an ice pack between her legs and cry. It wasn’t just the absence of sex that upset her — the pain was affecting her in many ways. She could barely walk. Her schoolwork suffered. Meals were delivery or fast food. She couldn’t work. She couldn’t use toilet paper. Or wear underwear, or pants. She couldn’t sit. She felt raw, like sandpaper was rubbing against her vagina. Worst of all, the doctors didn’t know what was causing it.
“I had a couple of doctors be like, ‘Just try to relax. You’re obviously stressed.’ Basically saying, ‘You’re just crazy,’ as if this is an anxiety disorder. It’s like, ‘Fuck you! I don’t have hysteria. This isn’t the turn of the century, Dr. Freud. I have real symptoms. My vagina is swollen like a fucking mango right now. Can we just talk about how this is not in my head?'”
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