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NEW YORK (Reuters Health) - As many as one in 12 women say they have a type of genital pain known as vulvodynia, yet few have been diagnosed with it, a new survey suggests.
Vulvodynia refers to pain in the external genital area that can either be chronic or arise from contact, including sex, tampon insertion or exercise that puts pressure on the area, like bike riding.
The problem was once thought to be rare, but researchers now estimate that it affects up to 14 million U.S. women at some point in their lives.
That's based on population surveys that ask women about vulvodynia symptoms. Those studies have suggested that women with the condition often go undiagnosed.
The latest study, published in the American Journal of Obstetrics and Gynecology, bolsters that idea.
Researchers found that of nearly 2,300 Michigan women they surveyed, just over eight percent had symptoms of vulvodynia -- including pain near the opening of the vagina that had lasted for at least three months.
The prevalence of vulvodynia was similar across age groups, up to the age of 70, the study found. The decline after that age seemed to be related to a dip in women's sexual activity.
The eight percent figure is based only on women from one region of Michigan. But it's in line with other research that has suggested about seven percent of women have vulvodynia at any given time, according to Dr. Barbara Reed, a professor of family medicine at the University of Michigan in Ann Arbor and the lead researcher on the study.
While it was not uncommon for study participants to have vulvodynia symptoms, few had ever been given that diagnosis.
Of the 208 women with current symptoms, almost half had sought treatment for their pain, but only three had been diagnosed with vulvodynia.
"Often, women are told they have a yeast infection or low estrogen levels," Reed told Reuters Health.
And those problems may really be the root cause in many cases of genital pain. But if, for instance, treatment for a yeast infection does not make the pain go away, then women should ask their doctor whether vulvodynia could be the cause, according to Reed.
Diagnosis, she said, involves a simple test where the doctor touches a Q-tip to the vaginal opening. That would not normally be painful, but would be for a woman with vulvodynia.
The precise causes of vulvodynia are not clear, Reed said.
Researchers speculate that different factors may contribute to the problem in different women -- including injury to the nerves that supply the vulva; abnormal activity in the hormone receptors on cells that make up the vulvar tissue; and dysfunction in the muscles of the pelvic floor.
Some women with vulvodynia, Reed said, also have other painful conditions, like fibromyalgia or irritable bowel syndrome.
As far as treatment, there are several options, including certain antidepressants and topical pain-numbing medications like lidocaine. But it's unclear how well they work.
A recent clinical trial found that one antidepressant, called desipramine (Norpramin), and lidocaine -- used either alone or together -- appeared no better than inactive placebo pills and ointments. On average, women's pain improved over three months whether they got the real treatment or not.
But Reed said that doesn't mean that some women can't find relief with those treatments.
Finding a treatment that works can sometimes be a process of trial-and-error, according to Reed. And some women just spontaneously get better with time.
For women who want some type of treatment, but do not want to go the medication route, there are other options, Reed said.
Physical therapy for the pelvic floor muscles may help some women, as may biofeedback to learn how to control the vaginal muscles, and cognitive behavioral therapy to learn better ways to deal with symptoms.
Some women also find that cutting down on foods that contain compounds called oxalates -- including greens, chocolate, beans and nuts -- can make their urine less irritating and help ease vulvodynia pain.
When non-drug therapies and medications fail, surgery -- called vestibulectomy -- to remove the painful tissue is an option.
But Reed said there has been a move away from that. "Especially since for many women, vulvodynia eventually goes away," she noted, "surgery may be an extreme measure."
Last year, the British Society for the Study of Vulval Disease issued guidelines stressing the need for a combination of therapies in managing vulvodynia. It said that an individual woman's pain should be carefully assessed, and she should be offered a range of treatment options depending on her personal situation -- including pain medication, physical therapy, psychological therapy and, "if all else fails," surgery.
SOURCE: bit.ly/mZU5dT American Journal of Obstetrics & Gynecology, online August 22, 2011.