Vulvodynia

Written by HealthyPlace.com Staff Writer

Victoria is a 36-year-old housewife living in Arizona, where her medical nightmare began. By all appearances she is the perfect model of the TV soccer mom, with a boy, 10, a girl, 7, a comfortable house in the suburbs and a 1998 Dodge 7-passenger minivan. Victoria also has a common, but relatively unknown disease, one that consumes her life. It is a disease with no cure - a disease that until recently had no name. It is a malady so personal, that Victoria won't discuss it with her closest friends or relatives, yet one afflicting 20 million or more American woman.

Victoria has "Vulvodynia" - a constant burning and irritation in the mouth of her vagina. She cannot wear pantyhose or jeans. She is extremely uncomfortable sitting or even standing for long periods. Victoria describes it as "'like a particularly painful and irritating yeast infection that never goes away." She's been forced to live with the pain and discomfort for years, because doctors at first misdiagnosed her condition, a too typical occurrence, and then could not find anything to relieve her symptoms. For Victoria, the symptoms of Vulvodynia first appeared in her late twenties, after the birth of her second child. But she thought these might be normal symptoms after giving birth.

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Sexual play and intercourse are intolerable. She went to her family physician thinking she had a bladder or yeast infection. However, the doctor who performed the pelvic exam found no abnormalities. She tried her gynecologist, who found red blood cells in her urine and referred her to urologist. The urologist determined that she had a urinary tract infection, although cultures of the urine showed no bacteria. He started Victoria on antibiotics.

"Because I didn't have an infection the antibiotics didn't help," said Victoria. "I was desperate - and desperately uncomfortable. I couldn't take part in daily living, it seemed." In her desperation she went to a series of new gynecologists and even tried consulting a psychologist after being convinced by a gynecologist that the whole problem was "in her head."

Finally she worked her way from one doctor referral to another until she met Dr. James Brown*, a gynecologist recommended by her family doctor. Dr. Brown diagnosed Victoria with "Vulvodynia." In medical terms, it sounded clear cut to Victoria. The doctor told her that Vulvodynia is a female medical syndrome of chronic vulvar discomfort characterized by complaints of burning, stinging, irritation or rawness.

Then he told her what she didn't want to hear -- that there was no known cure. "We've been studying this disease for the past century, but most intensely during the past 25 years. It is still not clear whether this is a neurological, dermatological, gynecological, urological, immunological, metabolic or infectious disease. There is ongoing research into the cause and effective treatments for Vulvodynia in all of these areas.

"There also appears to be some overlap with this disease and some other chronic conditions such as fibromyalgia (which is a painful muscle condition with chronic fatigue and flu-like symptoms), migraine headaches, and the irritable bowel syndrome." He said, "The current treatments include surgery, biofeedback, interferon injections, low oxalate diet, antifungal medications, and chronic pain therapies."

The frequency of Vulvodynia in the U.S. is still unknown, but it is believed to be widespread, possibly affecting one in seven women. It is rarely mentioned in surveys on women's health problems and is not known to many physicians or included in most medical school curricula. In a 1991 report in the American Journal of Obstetrics and Gynecology, Dr. M.F. Goetsch estimated it to be in as high as 15 percent of women. However, the accuracy of such numbers is questionable since it is so often unrecognized or misdiagnosed. Research reports on Vulvodynia are scarce. The National Institutes of Health convened a workshop on the subject in April 1997, and published the proceedings of this forum.

There are two national groups, the National Vulvodynia Association (NVA) and the Vulvar Pain Foundation (VPF), both of which offer peer counseling and support through local chapters. The National Vulvodynia Association, located in Maryland (301-299-0775), also promotes education of the medical community and the public about this disease. Similarly, the Vulvar Pain Foundation located in North Carolina (336-226-0704), supports research and education in the area of vulvar pain.

In searching the Internet, Victoria did discover the National Vulvodynia Association, which she jointed and began attending meets in her area, where she met many women with the same problem and learned that she was not alone with this condition. The also found out about the Vulvar Pain Foundation from her peers and wrote to them for information on the treatment of this condition.

In these support groups as well as with any individual therapy, it is recommended that meetings are held jointly with husbands/partners. The reason is that any sexual dysfunctional condition is disturbing to a marriage and both partners are affected. Sex is equated with love and either consciously or unconsciously men may come to believe that their partners are using this pain as an excuse to avoid sex. Often there is a lack of communication about the problem and they come to avoid discussing it rather than to rock the relationship.

They become frustrated with the failure of medical professionals to provide satisfactory solutions to the problem and both find it a threat to their self-images as a man or woman. Either of both partners may become depressed about their inability to enjoy sexual intercourse. Sex therapists who deal with this problem advise their clients to continually reassure each other that their love remains strong to reinforce these statements with frequent physical contact such as hugging, kissing, massage and oral sex.

Finally, both should continue to aggressively seek answers to this problem. For this demonstrates that their libidos are not declining due to the depressive aspects of this situation.

There are various treatments being tried to cure Vulvodynia - with limited success for some patients. "Vestibular vestibulitis" seems to be a specific sub-group of Vulvodynia, which is a most frequent cause of painful intercourse in premenopausal women. There is pain on touch or vaginal entry; exquisite tenderness to a cotton swab lightly touching the vestibular area (known as the "swab test"); and physical findings confined to vestibular redness. Women with vestibular vestibulitis cannot tolerate insertion of a speculum, manual foreplay or active intercourse. This specific condition is most commonly recognized by physicians and has been treated successfully in some cases with surgical removal of the involved area. However, surgery remains a drastic solution of last resort.