When a woman complains of genital pain so severe that it makes sexual intercourse all but impossible, her partner may jump to the conclusion that she has a phobia about sex. But what if that same woman also experiences excruciating pain when trying to insert a tampon, undergo a pelvic exam, wear a pair of jeans, ride a bicycle or go jogging? Can phobia explain all those problems?
Not very likely. In fact, studies have shown that sexual phobias are rarely the explanation for a condition known as vulvodynia, a chronic discomfort of the vulva that can result in searing or shooting pain when any amount of pressure is placed on the sensitized tissues. Some women compare the feeling to acid being poured on an open wound.
The problem can last months, years or a lifetime. Worse, doctors often misdiagnose it or treat it inappropriately, if at all.
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For decades, women suffering from vulvodynia have been told that nothing seems to be wrong with them - nothing, that is, that the examining physician can discern - or that the condition may be real but that nothing can be done.
Christin Veasley of Providence, Rhode Island, said that vulvodynia, which was diagnosed at age 18 during her freshman year at college, made it impossible for her to sit long enough to finish a midterm exam. Her doctor said there was no help for her condition.
The typical patient sees as many as a half-dozen doctors before finding one who acknowledges she has a real medical problem, even as the condition is yielding increasingly to an understanding of its causes and the development of more effective treatments.
To help counter the prevailing therapeutic nihilism, in 2006 the American College of Obstetricians and Gynecologists and the American Academy of Family Physicians sent information to 150,000 of their members, alerting them to the proper diagnosis of vulvodynia and the best ways to treat it.
A recent study financed by the National Institutes of Health and conducted by
Bernard Harlow at Harvard University indicated that as many as one woman in six, or 13 million American women, may suffer from vulvodynia during their lives. As with Veasley, for 6 percent of women the symptoms begin before age 25 and are usually limited to burning pain in response to touch or pressure at the opening of the vagina.
A second type of vulvodynia is more generalized. Phyllis Mate of Potomac, Maryland, executive director of the National Vulvodynia Association (www.nva.org), said in an interview that her symptoms, which had been mild for 15 years, "exploded" at age 40.
"I was incapacitated, afraid to walk and confined to bed on narcotic painkillers," Mate said. Nothing else helped, not antidepressants or topical anesthetics, and a biopsy - no longer done for this condition - revealed no treatable infection, only nonspecific inflammation.
NEW FINDINGS
William Ledger, professor emeritus of obstetrics and gynecology at the Weill Medical College of Cornell University and an expert on vulvodynia, said, "It is clear that there are subdivisions of this condition - one diagnosis doesn't fit everyone."
Working with Steven Witkin, Ledger has found two genetically based predisposing factors. In one, the women produce inadequate amounts of a substance that blocks an inflammatory response. "They get an inflammatory response to an infection," Ledger said, "but it doesn't go away."
Another genetic aberration results in unstable production of a substance that normally responds to an invasion by yeast or bacteria, placing them at increased risk of chronic infections.
Using a dermatological instrument that reveals two cell layers beneath the skin, Ledger said, "we're seeing much more widespread inflammation in these patients than appears to the naked eye." He added that he had treated patients who had vulvar inflammation with local estrogen or steroids; while they looked 80 percent better on the surface, their symptoms were only about 20 percent better, because the inflammation remained beneath the surface.
In addition, Ledger said, "there's good evidence that with vulvodynia as a whole, the women have more nerve fibers in the vulva and they are firing more pain signals to the brain." He continued: "It's a kind of vulvar fibromyalgia. Most patients with vulvodynia have very tender glands at the entrance to the vagina."
In fact, several recent studies have shown up to a tenfold increase in the density of nerve endings in what is called the vulvar vestibule. In some cases the women appear to have been born with this overabundance of nerve endings. But as Andrew Goldstein, a gynecologist at Johns Hopkins School of Medicine, and colleagues reported in 2006 in The Journal of Sexual Medicine, excessive nerve endings may also be caused by nerve growth factors after an inflammatory response or from hormonal changes like those induced by oral contraceptives.
HELPFUL TREATMENTS
Veasley, now a 32-year-old wife and mother of two, spent seven years trying "a laundry list of treatments," which, she said, "only provided minimal relief" for her condition, called vulvar vestibulitis. Shortly after marrying, she decided to try surgery to remove the layer of tissue containing an overabundance of nerve endings. She and her husband were finally able to have intercourse, and a year later their first daughter was born. Veasley said she had been "virtually pain-free" ever since.
But as successful as her final treatment was, Veasley, who serves as associate executive director of the vulvodynia association, also knows that surgery is not an option for everyone. As Goldstein reported, it is most successful in women whose pain is limited to the vulvar vestibule and those without extreme muscle dysfunction of the lower pelvis. Surgery is also more effective if done sooner, rather than later, after the development of life-inhibiting symptoms.
Mate's symptoms responded to another approach - two treatments to inhibit firing of the pudendal nerve, which enervates the lowest muscles of the pelvis, plus regular use of an anticonvulsant drug. The combination, she said, "enables me to lead a reasonably normal life," though both pressure and heat, as occur with prolonged sitting or wearing fitted pants, make her symptoms worse.
Ledger said patients with low production of inflammatory blockers are often helped by Cox-2 inhibitor drugs like Celebrex (though Vioxx, which is no longer marketed, worked better). Others find relief with drugs used off-label, like low-dose hydroxyzone or gabapentin to reduce nerve impulses from the vulva to the brain, mood elevators in low doses and the muscle relaxant Flexoril.
The National Institutes of Health recently began a vulvodynia awareness campaign at orwh.od.nih.gov/health/vulvodynia.html, which offers resources and information. Also free is a professional paper, The Vulvodynia Guideline, by Hope Haefner of the University of Michigan and 13 other experts. It is available in The Journal of Lower Genital Tract Disease, www.jlgtd.com, under the archives tab, on Page 40 of the January 2005 issue.
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