"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, a non-profit organization established in 1994, began as a small volunteer group. Today, more than 4,000 patients and health care practitioners support the organization. NVA disseminates newsletters written by medical experts, provides support services and physician referrals, and promotes research on the disorder. Its medical advisory board is comprised of experts from diverse medical specialties, including gynecology, pain management and physical therapy.

For more information, contact NVA Publicity Director, Sharon Jennings, at sharon@nva.org, 818-841-8487 or 818-822-6681 (cell). Alternately, contact NVA President Phyllis Mate at mate@nva.org, 301-299-0775 or 301-793-7437 (cell).

Please link directly to the National Vulvodynia Association at http://www.nva.org/

Source: National Vulvodynia Association

CONTACT: Sharon Jennings, NVA Publicity Director, +1-818-841-8487 or
+1-818-822-6681 (cell), sharon@nva.org, or Phyllis Mate, NVA President,
mate@nva.org, +1-301-299-0775 or +1-301-793-7437 (cell), both of National
Vulvodynia Association

Web site: http://www.nva.org/