Three years ago, Beth* was an otherwise-healthy woman in her mid-20s who wasn't able to ride a bike, have sex or even sit on a chair without excruciating pain.
It started out as what she thought was a bad yeast infection, but after multiple antifungal treatments, the stabbing pain in her vulva would not go away. Any pressure at all, and it would feel like a sharp blade was scraping her skin.
"I definitely felt lousy about it: unsexy, unfeminine, weirdly gross or broken," Beth said in an e-mail interview.
After seeing doctor after doctor, Beth was diagnosed with a disorder known as vulvodynia, a condition that affects up to 16 percent of women who often suffer for years without knowing the medical cause. And because many doctors misdiagnose the condition as a vaginal infection or psychological problem at first, it can sometimes take them just as long to find a cure.
But thanks to a surge in research about the disorder over the past decade, new treatment options like have emerged that give women hope that the pain won't last forever.
An inscrutable origin
Whereas other types of genital discomfort leave traces of their cause in PAP smears or wet preps, there's no test a doctor can perform to see if a patient has vulvodynia. The disease's main symptom is pain, itching, burning or discomfort - either intermittent or constant - that lasts for more than three months. Some doctors break the disease down into subtypes, like vaginismus, in which the vagina is so sore that no sexual penetration can occur, or vulvar vestibulitis, which causes redness and pain at the opening of the vagina.
Most frustratingly of all, it occurs for no medically obvious reason.
"Its mechanisms are poorly understood," said Pedro Vieira Baptista, a vulvar pain specialist in Portugal. "You just do not know why patients have pain. This pain can be localized or generalized to the whole vulva, and it can be spontaneous or evoked through clothes, bathing, tampon use or intercourse."
Vulvodynia is most often diagnosed when all the other possible perpetrators of pain - like cancer, infections or skin diseases - have been ruled out. The disease can strike women of any age, but most women are in their 20s when symptoms first emerge. Some doctors speculate that vulvodynia erupts after years of repeated vaginal infections, such as thrush, or from birth control pills' re-wiring of the body's hormones. Others say that repeated use of antibiotics can bring on the condition, as can allergic reactions or emotional stressors.
But frustratingly for doctors and patients alike, there is no "typical" vulvodynia case.
"We don't know what the condition's trigger is," said Lizelle Grindell, a nurse-practitioner and one of the few vulvodynia specialists in South Africa. "There's so many variables of things that can happen."
Many doctors, few solutions
Vulvodynia patients are often reluctant to approach their doctors at first for such a personal issue, which can make the condition even worse because of delayed treatment.
"They may be too shy to ask about sex," Grindell said. "It's just a subject that's supposed to work; you're not supposed to have problems with it."
For those who are able to overcome their shyness, a cure still may not come with the first, or even tenth, visit to the doctor's office.
"You will not find any drugs produced to try to 'cure' vulvodynia. Rather, people have been trying different drugs used for other purposes," Baptista said. "Vulvar disease in general has not been attracting gynecologists, probably because of the chronic nature of these problems and the fact that it can be very disappointing to both patients and doctor."
Potential treatments include everything from mild antidepressants (to dull pelvic pain), to topical anesthetics, to surgery as a last-resort option. Unfortunately, treatments are often hit-or-miss, and it can take many misfires before the symptoms finally begin to retreat.
"I try to explain the problem and set a strategy for the treatment," Baptista said. "I let my patients know that they will not get better in a few days or even weeks."
Once she was diagnosed, Beth was blasted with nearly every vulvodynia treatment under the sun. One specialist tried inserting a ring that slowly leaked estrogen into her vagina, in order to correct a possible hormone imbalance. Another specialist had Beth applying ointment every night, taking sitz baths, blow-drying her nether regions and using "dilators" to expand her vagina so that she could have sex again.
Though her symptoms are still ongoing, the fusillade of treatments did improve her condition eventually
"I had some optimism, but I think I was realistic about the outcome," she said. "It also helped when I finally found a really great doctor who put me on very aggressive treatment and sort of said, 'we WILL get you better,' while being upfront about the probability that I'd have relapses."
Biofeedback to get better
For South African vulvodynia patients, Grindell is one of the main sources of hope for a pain-free future. Practicing out of four offices, she uses biofeedback to strengthen and relax pelvic floor muscles, which Grindell said can relieve or eliminate symptoms entirely.
Emma* is a post-menopausal woman from Pretoria who started having pain during sex eight years ago. She saw multiple doctors who tried hormone-replacement therapy and topical numbing ointments, but nothing worked.
Out of ideas, they referred her to Grindell.
"I get the patients when no one else can do anything for them," Grindell said. "In most vulvodynia patients, the pelvic floor is already so tense that it goes into a spasm. We're trying to minimize the spasm."
During her sessions, Grindell checks electrical activity and muscle fibers in the pelvic floor. She tries to teach her patients to recognize abnormal muscle patterns and to normalize them. For Emma, the experience was life-changing.
"It took a lot of courage to go to someone for the examination," Emma said. "But she made me feel so comfortable and so at ease. I had immediate relief after the first treatment, and that's why I went back."
The importance of support
Emma and Beth both credit their kind and supportive partners for helping them through the long struggle for relief. This kind of support is so essential that specialists, including Grindell, often invite their patients' partners in during treatment sessions so that they can better understand the disease.
"It really helped to have a supportive partner, so it wasn't this embarrassing secret," Beth said. "There were a lot of extremely absurd aspects to the whole thing, like the time I got stopped in airport security for one of my vaginal dilators and had to try to explain to the screener what it was for. It was good to have people to joke about it with."
Women with vulvodynia can find help at online support groups like the National Vulvodynia Association. Grindell refers her patients to sex therapists and other psychologists who can help with the disease's devastating emotional consequences. The most important thing, however, is to seek help right away.
"Women should look for specialized help as soon as possible, before letting pain take over their lives," Baptista said. "It is also tranquilizing to find that other people face the same problems and that some improved or were cured."
Beth said that in talking to her friends and acquaintances, she found that there are plenty of other women who have had the problem at one point in their lives. She still has flare-ups around her period or when she's stressed, but finding effective treatment techniques has made them far more tolerable.
"My physical therapist told me this would probably always be my Achilles' heel, and she's been right," she said. "Still, at least I feel like I can treat it on my own now with baths, rubs, or even just let it be for a bit. It's much better than when it was this amorphous confusing pain that never responded to any treatment."
Advice for patients
If you think you might have vulvodynia, there are a number of things you can do to get help and relief:
Look through the ISSVD site (www.issvd.org) to find a doctor in your area.
According to Howard Glazer, a professor at Cornell University Medical College in New York, patients can treat acute episodes with cold packs or oilated aveeno in a sitz bath. Petroleum jelly or diaper cream is useful to protect the irritated tissue from sweat, urine or chlorinated water.
Wear cotton underwear and avoid pantyhose or tight-fitting pants. Unscented toilet paper, sanitary pads and laundry detergent can help you avoid allergic reactions that can spark a flare-up.
According to Beth, it's important to "surround yourself with kind, caring, people with good senses of humor, and don't be shy about telling them what you're going through. One of my great, happy surprises was how comfortable it was to talk to my close male friends about vaginal pain."
You can contact Lizelle Grindell to set up an appointment by calling 27 (0) 79 179 8949 or e-mailing email@example.com
(Olga Khazan, June 2010)
*name changed to protect patient privacy