Campaign Breaks the Silence on Invisible Pain Condition Affecting Millions of Women
Vulvodynia impacts sexual relationships, mental health, daily life
06 Oct, 2016, 11:51 ET
SILVER SPRING, Md., Oct. 6, 2016 /PRNewswire-USNewswire/ -- Millions of women and adolescent girls in the U.S. are living with an excruciatingly painful, invisible condition and suffering in silence. Today, on the heels of Invisible Illness Awareness Week, the National Vulvodynia Association announces the launch of "Indivisible," a campaign empowering women with vulvodynia, or chronic vulvar pain, to break their silence and improve the path to diagnosis and treatment.
"We have to talk about vulvodynia," said Phyllis Mate, President of the National Vulvodynia Association. "As many as 16 percent of women and adolescent girls will experience this pain during their lifetime, and many live with it for decades. Silence only increases suffering and hampers our ability to drive more effective treatment and research for a cure."
Vulvodynia affects women of all ages, races and ethnic backgrounds. Symptom onset typically begins between the ages of 18 and 25, with severe burning pain. For some, the pain is constant and impacts every aspect of their lives, while others primarily experience pain only with pressure or contact, such as during sexual intercourse or prolonged sitting. The impact on sexual intimacy can be devastating to relationships and marriages. And research shows that the inability to talk about the condition further isolates women leading to depression and anxiety.
Callista Wilson first experienced symptoms of vulvodynia when she was just a teenager. "I remember lying on the bathroom floor thinking what's wrong with me," said Wilson. "I didn't have a way to talk to anyone about it. It was my secret, private pain."
The Indivisible campaign empowers women to come together to raise awareness of vulvodynia, improve the time to diagnosis through direct engagement with health care professionals, and drive research for a cure.
Women will have an opportunity to share their experiences and advice openly or anonymously on the organization's social media channels and indirectly on SERMO, the leading physician social network, providing encouragement to other women and conveying the impact of the condition to health care professionals.
Research shows that 60 percent of affected women consult three or more doctors before receiving a diagnosis of vulvodynia. Of those women, 40 percent seeking treatment for vulvodynia fail to receive an accurate diagnosis.
"Our goal is to create dialogue, give women a name for their pain, and motivate more physicians to learn how to diagnose and treat the condition," said Mate.
For information about vulvodynia, visit www.nva.org. To learn about the Indivisible campaign, like the NVA on Facebook. For Callista's story, visit NVA on YouTube.
About the National Vulvodynia Association
The NVA is a nonprofit organization dedicated to improving the lives of women with vulvodynia. The organization maintains online learning programs and connects women to support services and specialists. The NVA also funds research and collaborates with Congress and the National Institutes of Health to increase funding of vulvodynia research.
CONTACT: Lissette Steele
SOURCE National Vulvodynia Association
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