CHRONIC VULVAR PAIN MAY BE A HIGHLY PREVALANT DISORDER
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Phyllis Mate
NVA President
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pmate@nva.org
CHRONIC VULVAR PAIN MAY BE A HIGHLY PREVALANT DISORDER – 16 percent of women may have suffered during their lifetime, yet only about half seek treatment .
BOSTON – In the first comprehensive analysis of its kind, researchers at Brigham and Women’s Hospital (BWH) have found the prevalence of a very debilitating and chronic vulvo-vaginal pain disorder in women known as vulvodynia has been significantly underestimated. Women who suffer from the disorder experience chronic burning or sharp knifelike pain that occurs in the absence of infection or vaginal diseases. Often times, the unexplained pain results in an inability to exercise, have intercourse, and in extreme cases can cause women to be bedridden.
The study findings will be presented at the National Institutes of Health (NIH) Vulvodynia Seminar on April 14 and are outlined in the April issue of The Journal of the American Women’s Medical Association (JAMWA) .
BWH researchers found that approximately 16 percent of respondents to a Boston-based population survey reported histories of chronic vulvar pain for at least three months or longer. Nearly seven percent of respondents were experiencing the pain at the time of the survey. Contrary to earlier assumptions, white and African American women reported similar incidence rates. However, Hispanic women were shown to be 80 percent more likely to experience symptoms compared to white and African American women.
“The magnitude of this problem is largely unknown,” said Bernard Harlow, PhD, a researcher in BWH’s Obstetrics and Gynecology Epidemiology Center . “Our study is the first to suggest that this disorder affects an ethnically diverse group of women and may be a much larger problem than we ever thought.”
Based on survey data, the researchers conservatively estimate that approximately five percent of all women will experience this condition before age 25, and it is likely that the true figures are much larger. The good news, according to Dr. Harlow, is that one piece of data strongly suggests clinicians may have a potential indicator of vulvodynia symptoms. Though further analysis is required, the study showed that women who experienced pain upon first tampon use were seven to eight times more likely to have chronic vulvar pain later in life.
“These findings are extremely important given the lack of understanding and education surrounding vulvo-vaginal care,” said co-author, Elizabeth Gunther Stewart, MD, also of BWH, a nationally recognized vulvodynia expert. “We are hard pressed to dispel the myth that vaginal pain is just in a woman’s head, despite the 10 million doctor’s office visits for this vulvo-vaginal problems that occur every year. This research tells women they are not alone – according to the data, upwards of 14 million women may suffer from vulvodynia during their lifetime.”
The population assessment, based on 4,915 questionnaires sent to women age 18 to 64 in diverse Boston-area communities, also revealed that many women are challenged when it comes to diagnosis. About 40 percent of women surveyed chose not to seek treatment, even when the symptoms limited intercourse. More than 60 percent of respondents who sought treatment saw three or more clinicians.
“I spent many years in severe pain, seeking help from doctor after doctor, thinking I was the only one in the world who suffered from this condition,” said Phyllis Mate of Washington , D.C. “Eventually I found a doctor who put me in touch with a small group of vulvodynia patients in my area. We decided to help ourselves and other women by creating an organization dedicated to raising public awareness of this condition.” Mate and four other patients went on to found the National Vulvodynia Association (NVA) in 1994.
“Considering that we have likely underestimated the prevalence of this condition, there is a significant need to learn more about vulvodynia and educate both women and clinicians,” concluded Harlow . “Fortunately, with the support of the NIH, we are allocating more resources toward further research and ultimately providing better care for patients.”
BWH is a 725-bed nonprofit teaching affiliate of Harvard Medical School and a founding member of Partners HealthCare System, an integrated health care delivery network. Internationally recognized as a leading academic health care institution, BWH is committed to excellence in patient care, medical research, and the training and education of health care professionals. The hospital’s preeminence in all aspects of clinical care is coupled with its strength in medical research. A leading recipient of research grants from the National Institutes of Health, BWH conducts internationally acclaimed clinical, basic and epidemiological studies.
About the NVA
The National Vulvodynia Association (NVA), a non-profit organization established in 1994, began as a small local support group. Today, more than 4,000 patients and health care practitioners throughout the world belong to the organization. The NVA disseminates newsletters written by medical experts, provides support services and physician referrals, and encourages research on the disorder. Its medical advisory board is comprised of clinicians and scientists from diverse medical specialties, including gynecology, dermatology, pain management and physical therapy. For additional information, visit the NVA’s website at www.nva.org
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