Thousands of Women Suffering from Unrelenting Gynecologic Pain Flood Congress with Emotional Appeals for Help
Silver Spring, MD – (June 2, 2005) – On June 9th, the nation’s Capitol will host a pivotal Congressional briefing on three highly prevalent, life-altering chronic pelvic pain conditions – vulvodynia, endometriosis and uterine fibroids. Last week, the US Congress received thousands of e-mails from women across the country, many of whom met with representatives to plead for research funding for a mysterious medical condition affecting 6 million American women.
“For the past 10 years, I’ve heard thousands of heartbreaking stories from women who’d lost all hope of living a normal life. Our patient advocacy campaign has restored hope to these women,” said Phyllis Mate, President of the National Vulvodynia Association (NVA).
Vulvodynia affects women of all ages. Odds are that you or someone you know suffers from this debilitating chronic pain disorder, but has not yet been diagnosed. Vulvodynia is chronic vulvar pain in the absence of infection or skin disease of the vulva or vagina, characterized by burning, stinging, and/or rawness of the female genitalia. Some women describe the pain as “having acid poured into an open wound.” Data from an NIH-funded Harvard study indicates that 16 percent of women experience chronic vulvar pain during their lifetime and 6 percent experience symptoms before age 25. (Harlow, 2003). Most sufferers visit five or more doctors before receiving an accurate diagnosis.
Vulvodynia has a profound impact on quality of life. It affects the ability to engage in sexual intercourse and can impair the ability to work. In severe cases, women are bedridden with excruciating pain.
Because of a lack of research, its causes are unknown. Vulvodynia is not caused by an active infection or sexually transmitted disease. Medical professionals speculate that causes may include an injury, trauma, or genetic factors. Current treatments are limited in their effectiveness and aimed solely at managing symptoms.
With the support of the NVA, women suffering from vulvodynia are becoming health activists.
“Speaking to my representatives made me feel that I really can make a difference!” said Maryanne, a long-time vulvodynia sufferer and participant in last week’s inaugural NVA Grassroots Advocacy Week.
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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