Leslie tried creams, topical acid, surgery, horse tranquilizers -- even denial -- but for more than 10 years, nothing would stop the pain. She ended a relationship, stopped having sex, filled in the gaps in her social life with gay men. Why? Because Leslie (not her real name), a 34-year-old corporate lawyer in Manhattan, suffers from, arguably, the most uncomfortable kind of discomfort: genital pain. In her case, vulvodynia -- literally, pain in the vulva.
"People are talking and learning about it more now, but I feel like I'm on the forefront of this shit," sighs Leslie who, with the right combination of doctors, therapists and treatments, finally has the condition under control. "Twice now I've brought it up to someone who's said, 'Oh, I know someone else who has that.' There are all these women fumbling in the dark."
According to the latest estimates, in fact, 6 million women are suffering from vulvodynia right now. "It's the condition that everybody thought nobody had," says Christin Veasley, director of research and professional programs at the National Vulvodynia Association (NVA), a nonprofit organization created in 1994 to improve the lives of people affected by the condition.
And yet while vulvodynia plagues millions of women, it is a misunderstood and understudied women's health problem. An interesting comparison: In 1992, the National Institutes of Health funded 60 studies on endometriosis, another painful women's health disorder that affects 5 and a half million women, compared with only six studies they have conducted on vulvodynia -- ever. The latest research, done at Boston Brigham and Women's Hospital and published in April's Journal of the American Women's Medical Association, found that 16 percent of women will experience chronic vulvar pain, described as a burning, stinging or stabbing sensation, either constant or on contact, ranging from annoying to disabling, and lasting three months or more. This "lifetime cumulative estimate" means that 14 million American women, of all races, will experience vulvodynia of some kind at some point -- 5 percent of women before age 25. Vulvodynia strikes white and African-American women at similar rates, but for reasons yet undetermined, Hispanic women are 80 percent more likely to be affected.
And yet even though the condition is so widespread, roughly 30 percent of women will not seek medical treatment for vulvodynia, even when the pain is keeping them from having sex. Many assume from the burning and itching that they've got the yeast infection from hell (as do some doctors even when there's no yeast present ) and -- futilely -- wind up mainlining over-the-counter Monistat. Some, depressingly, may not realize that intercourse is not supposed to be painful. And there are likely a handful who are so freaked out by vagina pain to begin with that they just keep walking around with their deep, dark, painful secret. Those who do seek treatment -- generally those in the most pain -- typically see five doctors before getting a proper diagnosis and worthwhile treatment options.
Readers with total "Sex and the City" recall may be thinking, hmm, vulvodynia, isn't that what Charlotte had on the season premiere a couple of years ago? Yes. Problem is, on the show, Charlotte was told that her condition was not serious, "mostly just uncomfortable," and was sent off with some pills to "get it under control" -- which apparently worked by the following Sunday.
The subject of another high-profile case study was much less fortunate. In 2001 Susanna Kaysen, of "Girl, Interrupted" fame, published "The Camera My Mother Gave Me," a spare, graphic account of her own battle with the debilitating vulvar pain. Kaysen writes (brace yourself): "Some days my vagina felt as if somebody had put a cheese grater in it and scraped. Some days it felt as if somebody had poured ammonia inside it. Some days it felt as if a little dentist was drilling a little hole in it." Even when the pain fades temporarily, she knows it'll come back, especially if she has sex with her then-boyfriend (who totally doesn't get it). The constant presence, or threat, of pain thus transforms -- narrows, disfigures -- her entire life. "My vagina had died," she writes. "I'd forbidden it to express interest in any person or activity, because I knew if I indulged it it would start up with that zing, sting stuff again. Exiled, starved, and in solitary confinement, it had eventually succumbed."
Though she lives in the Boston area, the doctor capital of the world, Kaysen never found a workable medical treatment. Today, Kaysen hasn't so much lost or won her battle; rather, she's signed a treaty, with massive concessions. "Celibacy is a great cure!" she said wryly in a recent phone conversation. "I wasn't interested in having sex again. The only thing I was interested in was not having pain. Pain eclipses desire."
For Phyllis Mate, 54, executive director of the NVA, a mild form of vulvodynia started in her 20s and became such severe knifelike and burning pain in her late 30s that she could barely walk. She wound up in bed and on Percocet for months; her doctors were baffled. "It was the first time in my life I thought about suicide," she recalls. "I remember saying to myself and my friends that if I had to live like this for the rest of my life, I'd rather be dead." Mate still cannot wear pants or pantyhose, ride a bicycle, or sit for longer than about 30 minutes at a time without pain. But -- with the help of anticonvulsant medication -- the pain is not as constant as it used to be. "Now I have weeks where I'm doing pretty well and then weeks where I am doing very badly," she says.
Is no one helping these women? Well, some doctors are trying. Complicating matters, however, is the fact that the term "vulvodynia" describes a condition, not an illness -- it's the symptom, not the cause. It means your vagina hurts like hell, period. It's kind of like when you have "conjunctivitis," which is basically "inflammation of the stuff covering the eyeball" -- could be allergic, could be viral, could be bacterial, depending. As for vulvar pain, doctors struggle with diagnosis and treatment mainly because vulvodynia is what you have when you don't have a specific infection or other vaginal disease. It's often completely invisible, too.
"It's a rule-out diagnosis," says Dr. Elizabeth Gunther Stewart, a coauthor of the Boston study and author of "The V-Book: A Doctor's Guide to Complete Vulvovaginal Health." "There's a long list of physiological, gynecological problems -- like skin disorders and infections -- that can cause pain but aren't vulvodynia. People recognize that it exists but are still not very good at treating it. We're just getting started in terms of giving women what they need."
Here's what doctors do know. Vulvodynia generally shows up in two forms. There's Vulvar Vestibulitis Syndrome (VVS), which is pain around the vaginal entrance only upon touch or pressure (sex, gyno exam, even sitting), and there's Dysesthetic Vulvodynia (DV), which is diffuse, unprovoked pain. Its various causes appear to include irritation or injury of the pudendal nerve (one of the main nerves in the genital region), allergies or chemical sensitivities (reactions to irritants either external, such as detergent, or internal, such as the salts called oxalates in urine), abnormality in the pelvic floor muscle (such as "hypertonicity," or excess tension at rest), and genetic susceptibility to certain types of inflammation. Depending on what they think is the cause, doctors may try topical anesthetics or estrogen, tricyclic antidepressants (for pain, not depression), specialized physical therapy, or even surgical removal of troublesome nerve endings.
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.'"