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?'"
When she visited Dr. Kevin Ault, an Associate Professor of Gynecology and Obstetrics at Emory University School of Medicine, he confirmed her self-diagnosis: she had vulvodynia (aka, burning vulva syndrome), an ambiguous term to describe chronic pain in the vulva.
Though her case was extreme, it isn't as isolated as it sounds. According to Dr. Ault, approximately 15 percent of women have vulvar pain at some time in their lives, although it often gets misdiagnosed as a yeast infection. Although there is no known cause or universal treatment, he usually suggests topical medications to decrease inflammation and pain, physical therapy, pills aimed at chronic pain (such as Elavil, Lyrica, Cymbalta), or surgery.
He started her with steroid cream and numbing agent for when she tried to have sex. However grateful she was to find a knowledgeable doctor, she left the office upset and crying over her confirmed diagnosis. Dr. Ault suggested an antidepressant prescribed to soldiers with phantom limb pain to help manage the physical and emotional stress of the situation. It helped, she says, but the moment she was touched she would flare up again.
The vulvodynia began to take a toll on her relationship with her boyfriend. It was too painful to have sex, and the numbing cream defeated the purpose. He was patient, but it seemed to her he'd almost shut down. She worried about him cheating on her. She felt a twinge of jealousy when she thought of him watching porn. Normally it wouldn't bother her, but she worried he watched the women and thought, "My girlfriend can't have sex." Whenever she turned to porn to satisfy her own sexual appetite, she would cry through it because it hurt so much. It took a toll on her psyche.
"I didn't know if I was going to get better," she says. "And that was also mixed with, I haven't had so many partners ... why is this happening to me? I've done everything right."
Dr. Ault suggested physical therapy. Although the cause is unknown, pelvic floor dysfunction is thought by some to contribute to chronic pain syndrome such as vulvodynia. "She started massaging around my pelvic bone, my hip bone," she remembers. "Then she basically gave me an internal pelvic massage, where she moved her finger clockwise and counter clockwise, pushing on my muscles, and I could feel that everything inside was tight. As I kept seeing her, she would keep holding muscles until they kind of gave and relaxed. Like she was telling my body, 'It's OK to let me in. It's OK.'"
After a year, her boyfriend broke up with her. She was still in chronic pain. She would have to undergo a vulvectomy, surgery in which the painful area of the vulva is removed. "I was crying all the time, I couldn't get out of bed. The pain was excruciating. It was just this horrible day-to-day. I just felt like a total waste of life. I was tired of letting my vagina rule my entire life and wondering, 'Will I ever have sex again? What it would be like in a relationship?'"
After 19 months of physical therapy, combined with being on antidepressants and birth control, she began to feel better. "There are still some days when I felt like shit. I've made a routine of things. Ice packs and Ibuprofen to keep the swelling down. It makes you feel so fundamentally wrong, like you're not a girl, not desirable. As if we don't have enough things telling us we're not desirable. The thing that's supposed to make you a girl is all fucked up."