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Contact: Phyllis Mate
(301) 299-0775
Fax: (301) 299-3999
The National Vulvodynia Association Sponsors the First Ever Grassroots Advocacy and Awareness Week for Female Chronic Pain
Affected Women May be Speaking Out in Your State or One Near You
Silver Spring , MD ( May 16, 2005 ) - The National Vulvodynia Association (NVA) is sponsoring its first ever National Vulvodynia Grassroots Advocacy and Awareness Week May 23 rd - 27 th . The Advocacy Week will be followed up June 9 th in Washington D.C. with a Congressional briefing on chronic pelvic pain conditions, including vulvodynia, endometriosis and uterine fibroids.
At the local level, women whose lives are affected by vulvodynia will participate in informational seminars with legislators, media representatives and the public to discuss this complicated medical condition that affects as many as 6 million American women . Meetings will be held in Connecticut , Maryland , Massachusetts , Michigan , New Jersey , Nevada , Virginia , New York , California , Florida , Wisconsin , Rhode Island , Minnesota , Colorado and Washington , D.C. Women who suffer from vulvodynia, family members and friends, and physicians who treat vulvodynia will also write letters and send emails to their United States Senators and Representatives during this advocacy week.
Vulvodynia affects women of all ages, from adolescence through menopause. Odds are that you or someone you know suffers from this debilitating chronic pain disorder, but has not yet been diagnosed. Vulvodynia is defined as chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia when there are no infection or skin diseases of the vulva or vagina that could cause these symptoms. Data from a NIH-funded Harvard study indicates that as many as 16% of women experience chronic vulvar symptoms over the course of their lives and more than 6% of women experience symptoms before age 25 (Harlow, 2003). The Harvard study, which assessed 4,915 women between the ages of 18-64, also showed that women who experienced pain upon first tampon use were 7 times more likely to suffer from this condition (further studies are pending).
Vulvodynia, as with most chronic pain conditions, has a profound impact on quality of life. It often affects one's ability to engage in sexual activity and exercise, and can impair one's ability to work and participate in social activities. In severe cases, it can even cause women to be bedridden. Vulvodynia is not a psychological condition, but the limitations caused by it can negatively affect self-image and may lead to depression.
A woman with vulvodynia typically sees at least five doctors before she is given a correct diagnosis. The causes of vulvodynia are currently unknown, largely due to the lack of research on the disorder. Current research is investigating factors associated with the development of vulvodynia and potential causes. Medical professionals speculate that causes of the condition may include, but are not limited to, an injury, trauma, or genetic factors. What we do know is that t here is no evidence that vulvodynia is caused by an active infection and it is not a sexually transmitted disease. Since there currently is no cure for vulvodynia, the possible treatments are even more varied than the possible causes. The truth is there is no clear understanding why this syndrome exists or how to treat it.
On June 9 th , the NVA will participate in a Congressional briefing to educate and raise awareness for chronic pelvic health conditions. This will bring together pelvic health experts, patients, and NIH representatives to educate policymakers and their staff about vulvodynia, endometriosis and uterine fibroids, discuss the impact these disorders have on the lives of patients and their families, and present current research on their diagnosis and treatment. The goal is to create awareness about the overwhelming lack of attention and research funding these disorders receive and help garner support for H.R. 2457/S. 1087, the Uterine Fibroid Research and Education Act introduced to the 108 th Congress and the current H.R. 1020, the National Pain Care Policy Act.
With the support of the NVA, women suffering from vulvodynia are taking a stand by participating in this advocacy week and Capitol Hill briefing. Help raise awareness NOW.
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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