Pam Fischer, 50, a registered nurse in Naperville, Ill., finally found several likely culprits for the burning and itching that was so intense it kept her bedridden -- "totally overwhelmed, just hoping it would calm down" -- for weeks at a time. It turned out she not only has several allergies, but also fibromyalgia, a chronic pain condition that affects muscles and soft tissues -- including, in some cases, the vulva. She now carefully selects only hypoallergenic products and takes the drug Guaifenesin -- an expectorant used to liquefy mucus that also appears to have the effect of flushing pain out of tissues. The pain's not 100 percent gone, but at least the mystery is. "It comes and goes, but I know the reasons for it," she says.

Unfortunately, some treatments have their risks and downsides. For Leslie, surgery -- removal of inflamed glands near the vaginal opening -- had the opposite of the intended effect. "The doctor fucked up the nerves in the area and didn't treat the underlying condition. That's when it started hurting all the time," she says.

For Christin Veasley of the NVA, surgery eventually reduced her pain by about 80 percent, but only after seven years of everything else -- topical and oral pain medications, diet modification, etc. -- failed or made matters worse. At one point she almost dropped out of college, not because of the pain, but because of the pain killers. "I couldn't sit through class because the meds knocked me out," says Veasley, now 28.

Highly specialized physical therapy has proven, in some cases, to be an effective and welcome alternative to treatments involving knives or drugs. Dr. Howard Glazer, a clinical psychologist and clinical associate professor in obstetrics and gynecology at Cornell University Medical College/New York Presbyterian Hospital, uses surface electromyography -- the same technology used in electrocardiograms -- to read the "electrical signature" of the pelvic floor muscle with a device like a little metal tampon. Once he is able to interpret a particular muscle abnormality, he can work with the patient on extremely precise inner exercises to correct it -- which, he says, leads to pain relief in 80 percent of his clients. Call it very personal training: These are subtle and specific movements, says Glazer, not just the "kegel" exercises forever enshrined in women's magazines.

Along similar lines, electrical stimulation that relaxes and strengthens the pelvic-floor muscles has really worked for Leslie. "My muscles in that area are always tense, like a fist that's always clenched," she says. She has an at-home electrical device that she's supposed to use for 20 minutes a day (and, she says, an "amazing" physical therapist -- trained by Dr. Stewart -- who yells at her weekly for not using it enough). "It's a little probe that you insert vaginally, and it gives off a current for about 10 seconds, then nothing for 10 seconds, then current for 10, etc.," she says. "I saw something similar in the 'Jackass' movie -- I think Steve-O attached it to his balls."

Even though treatment techniques have expanded and improved, fundamental misunderstandings and misguided, incomplete approaches persist. "It's not a gynecological disorder, it's a pain disorder," says Glazer. Sure, vulvodynia shows up below the belt, but it has more in common physiologically with pain syndromes than with other genital problems.

In fact, Phyllis Mate got relief only when she finally consulted a pain specialist. "He knew nothing about vulvodynia, but he knew something about pain," she says. He recommended a cortisone and lidocaine injection that would anesthetize her pudendal nerve. The procedure reduced the pain by half, she says. She then started on the anticonvulsant medication that she's been taking for the past 12 years.

Mate got lucky, apparently. Usually, when it comes to vulvodynia, "The pain management people have never heard of it," says Stewart.

So when it comes to funding and other attention from the medical establishment, vulvodynia can get lost in the shuffle. At the National Institutes of Health, it's currently categorized with Child Health and Human Development, which does include women's health research, but which also leaves vulvodynia to compete for attention with everything from autism to teen pregnancy. The National Vulvodynia Association is working to support the National Pain Care Policy Act of 2003, which would establish a National Center for Pain and Palliative Care Research at the NIH. "There's no central institute that funds pain disorders," says Veasley. "This would be favorable for all pain conditions that aren't getting enough attention." The act was referred to a House subcommittee in May, and on Aug. 5, Sens. Tom Harkin and Russell Feingold participated in a congressional briefing to make the case for drastically increased funding for the study of vulvodynia.

Physicians must also remember that when it comes to chronic pain -- especially the most traumatic kinds in the most sensitive areas -- some of the pain becomes psychological. "The people I see have not been helped by a variety of treatments with a variety of practitioners and they're very demoralized. By the time they come to me, they've got several things going on, not the least of which is the pain," says Dr. Leonore Tiefer, a clinical associate professor of psychiatry at the NYU School of Medicine who treats vulvodynia patients -- and often, their sexual partners -- in her psychology practice. Sometimes the pain can mess with your head even after it's gone. "Women come to me pissed off at the world," says Glazer. "And at the outcome of treatment, when they report little to no pain, they may also report little to no sex. As a means of coping, these women have buried their libido, have redefined themselves as asexual. Only in the past few years have we begun to look at sexual rehabilitation as part of their treatment." Both he and Teifer work to reintroduce patients to their sexual selves, to warm them up to be active again.

Leslie credits her psychologist with getting her to recommit to addressing the pain in the first place. "I had gone radio silent on the whole thing, hopeless. I decided I was just not gonna talk about that part of my life," she says. "I got very discouraged. I felt like I was taking all these drugs, using all these creams, schlepping down to Philadelphia all the time [to see a specialist], and nothing was working. I didn't want to deal with it anymore," she says -- not even in therapy. When talking about being single, Leslie recalls, "My therapist would say, 'But you're attractive and fun,' and I'd say, 'I think it's about my mom.' Finally I said, 'Well, there is this one thing ...,' and he was, like, 'You've gotta be fucking kidding me. You have to take care of this.' He pushed me until I did." After over 10 years of trying -- and not -- Leslie has finally succeeded in controlling the pain with a combination of neurological pharmaceuticals (again, for pain), loose clothing, and physical therapy.

Leslie is now back to dating and having sex. For her, the reacquaintance has been welcome, and the incidental or anticipated -- but mostly bearable -- pain worth it. "I didn't resist going back to sex," she says, "though it is something I'm thinking about when I'm on a date with someone I like. In those situations I'm always thinking, Will it hurt? As a result, I tend to use alcohol as a bit of a crutch, not only because it numbs the pain significantly, but also because it reduces my general skittishness." She's found that she's able to talk about her condition with men, who have been "wonderfully understanding," and, more important, with women. "I recently talked to a woman [with vulvodynia] who was really discouraged," she says. "I sat her down and said, 'You're not alone.'"

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