National Vulvodynia Association

In August 1994, five women sat on a porch drinking lemonade, wondering whether they could be the only women in the world with constant burning pain in the vulva. They shared several distressing symptoms including pain with sexual intercourse, sitting for extended periods, gynecological exams and wearing fitted pants. Most had visited more than five doctors seeking a diagnosis and treatment. Cortisone topicals prescribed by their gynecologist or dermatologist didn’t work. Fortunately, some had recently found vulvovaginal specialist, Stanley C. Marinoff, M.D., or his colleague, dermatologist Maria Turner, M.D., both of the Washington, DC area, who had written an article on a condition called Vulvodynia (“burning vulva”). As it turned out, Marinoff and Turner were pioneers in the field and didn’t think that women with pain in the external genitalia were imagining their symptoms. Dr. Turner worked at the National Institutes of Health (NIH) and was not in private practice, so she suggested that neurologist Helene Emsellem, M.D., might be able to treat the pain aspect of the condition. Dr. Emsellem, realizing how isolating it was to suffer from an unknown disorder, asked her five vulvar pain patients if they wanted to speak with each other. By bringing us together, Dr. Emsellem was instrumental in the creation of the National Vulvodynia Association (NVA).

Over the next five years that small group of women, with an initial donation of $5,000 from our wonderful benefactor, Mona Schlossberg, and the guidance of Dr. Marinoff, helped to establish Vulvodynia as a legitimate disorder among doctors, provided information and support to thousands of suffering women and began a public awareness campaign. We had created the non-profit NVA, the only doctor-supported national vulvodynia organization that would continue to serve thousands of women and health care providers worldwide.

Now that NVA has reached its 20th anniversary, we want to take a moment to reflect on some past accomplishments and acknowledge the people responsible for them. We have successfully put Vulvodynia on the map at several Institutes at the NIH as well as on Capitol Hill. In 1998, after contacting women’s health advocate Senator Tom Harkin (D-Iowa), and especially his then chief of staff, Peter Reinecke, strong language promoting Vulvodynia research was included in the NIH budget appropriations report for the first time. NIH, with encouragement from Capitol Hill, has held three Vulvodynia conferences for health care providers and researchers in the past 14 years and started funding Vulvodynia studies in 2000. During the same time period, NVA made significant progress in obtaining media coverage by issuing press releases, which generated stories on Vulvodynia in hundreds of magazines and newspapers and led to segments on TV shows such as Oprah, Dr. Oz, 20/20 and Sex in the City. If you Google Vulvodynia today, there are hundreds of websites to choose from, which was certainly not the case in the late 1990s.

As one of the original group of five, I am both amazed and grateful for how far we’ve come. Although I am the only co-founder still active, I have not forgotten the contributions of the other four: Harriet O’Connor, Support Director; Rhonda Brunell, Treasurer; Marjorie Veiga, Public Relations and Webmaster; and Jacqueline Smith, our first Executive Director. Thanks very much to each of you. There were also many others who volunteered their time. I don’t have the space to name everyone, except to acknowledge our very first part-time staffer, LuEllen McCormack, who managed the growing NVA database and always had a smile on her face and a tiny poodle in her purse. Over the years, we’ve had many terrific women (and one man) on our volunteer Board of Directors. I’d just like to mention Andrea Hall, J.D., who spent more than a decade laying out and proofing all our newsletters with me, and Maurice Kreindler, Treasurer, who has taken excellent care of our financial assets for the last 15 years.

Our Board is most proud of the many researchers we have managed to fund, enabling some to obtain grants of $1 million or more from the NIH or other sources. This has been our greatest gift to women who currently have Vulvodynia and those who will come afterwards. A dedicated group of researchers from all over the world has been focused on designing studies intended to shed light on the cause(s) of Vulvodynia. My hope is that one or two major findings are only five to ten years away. That knowledge should jump-start a race to find novel effective treatments for Vulvodynia sufferers, and eventually lead to a cure for some women. Meanwhile, the NVA-funded National Vulvodynia Registry has been underway for four years, with the participation of at least eight doctors from across the US. These doctors submit information on willing Vulvodynia patients to a centralized database, which can then be analyzed by experts. This information includes which treatments have been tried on different types of vulvodynia patients and how successful they have been. Thanks to a grant NVA obtained from the Patty Brisben Foundation, for the past 18 months the Registry’s scope has expanded to collect data on post-menopausal as well as younger women.

On the educational front, we developed and published four guides for patients, the most popular of which is our self-help guide. Our website, www.nva.org, is a gold mine of information for patients, health care professionals and the public. The patient tutorial on our site is an all-in-one tool for women to use to educate themselves before or after they receive medical help. With assistance from our dedicated medical advisory board, former executive director Christin Veasley developed the only online CME-accredited tutorial on the diagnosis and treatment of Vulvodynia for health care providers. This tutorial has been very successful, with approximately 1,400 providers completing the post-test every three months.

In April 2014, NVA was joined by Lisa Goldstein, M.S., our new executive director, who is a 20-year veteran of the American College of Obstetricians and Gynecologists. Lisa’s current major task is overseeing the revision of our website, which has been generously funded by Purdue Pharma, a long-time supporter of NVA projects. (Our only other full-time staffer is our conscientious administrator, Gigi Breechen, who has managed the database, fulfilled thousands of mailings and responded to countless inquiries for over 11 years.) This past spring, our Board of Directors invited Andrew Goldstein, M.D., director of the Centers for Vulvovaginal Disorders and the Immediate-Past President of the International Society for the Study of Women’s Sexual Health, to join our Medical Advisory Board. We are confident that both Goldsteins (no relation) will continue to be strong advocates for women with Vulvodynia.

Our Hope for the Future

While NVA continues to fund pilot research on Vulvodynia, we are optimistic that NIH and other institutions will increase their funding in this area. We are aware that Vulvodynia is associated with other conditions, such as interstitial cystitis and irritable bowel syndrome. It may turn out that some research findings on interstitial cystitis, or another chronic pain syndrome, also apply to Vulvodynia. If that is the case, it could save Vulvodynia researchers time and effort, and hasten the process of determining the cause(s). NVA hopes that once we have this valuable information, some pharmaceutical companies will spend their resources on developing novel treatments. Pharmaceutical companies should be encouraged to make that investment after examining the results of epidemiology studies that estimate 12-16 million women in the US alone experience Vulvodynia or its symptoms. By NVA’s 40th anniversary, we hope to report that at least one pharmaceutical company has life-changing news for most of us. Once we have treatments that have been scientifically proven to relieve Vulvodynia and there is an effective treatment for everyone, the NVA can change its main focus to prevention. I believe that will happen in our lifetimes.