Welcome to Vulvodynia Matters

Vulvodynia Matters is a Boston-based nonprofit organization dedicated to helping women overcome the pain and isolation of vulvodynia.

“If there’s an elephant in the room, introduce it.”
—Randy Pausch, The Last Lecture

What is Vulvodynia?

Vulvodynia (literally, painful vulva) is the medical term used to describe unexplained and persistent pain in a woman’s genital area (vulva).

Studies indicate that as many as one woman in six experiences unexplained periods of genital pain lasting 3 months or more. The pain can be so intense that many everyday activities become impossible, disrupting relationships, families and careers and leaving women feeling isolated and hopeless. Yet for various reasons, many doctors, even some ob-gyns, do not know enough about vulvodynia to treat it effectively or even to recognize it in their patients. Read more »

Why Does Vulvodynia Matter?

  • Because Vulvodynia is devastating for women and their families. It disrupts marriages, family life and careers by making it impossible for women to have sexual intercourse or even to walk, sit or drive without excruciating pain.
  • Because most cases of Vulvodynia are misdiagnosed again and again, sometimes for years. Often this results in mistreatments that make the condition worse, which can leave patients with permanent nerve damage and other complications.
  • Because the difficulty of discussing genital pain often leaves women feeling isolated and hopeless.
  • Because not enough has been done to find a cure, to develop consistently effective treatments, or to provide support and services to women with this condition.
  • Because the woman it strikes may be your daughter, your wife, your partner, your sister, your best friend, or you.

What We Do

We SUPPORT patients and their loved ones, by:

  • Providing support services and practical resources to help patients and their loved ones cope with and manage vulvodynia
  • Serving as a resource for reliable, up-to-date information about vulvodynia and related disorders

We EDUCATE women, the health community, and the general public, by:

  • Providing women with information about vulvodynia and general vulvar health to empower them to be active participants in their care
  • Raising the medical community’s awareness of vulvodynia—its symptoms, impact, and appropriate treatments
  • Educating the general public about the physical, emotional, and sexual challenges facing patients to encourage supportive friend and family involvement

We ENCOURAGE a collaborative approach to understanding and treating vulvodynia, by:

  • Fostering a collaborative and supportive approach to care that embraces both Western scientific medicine and complementary and alternative healing practices
  • Cultivating partnerships and collaborations with other organizations to broaden understanding and awareness of vulvodynia as a serious women’s health condition

 

Vulvodynia Matters, Inc. is a 501(c)(3) tax-exempt nonprofit organization incorporated in Massachusetts. We do not engage in the practice of medicine. We recommend that you consult your own physician regarding any course of treatment or medication.