History

Major Milestones in the History of the National Vulvodynia Association

2016

2015

  • Dr. Kellogg-Spadt, vulvovaginal/pelvic pain specialist and sexual dysfunction clinician/therapist joins the Board of Directors.
  • Our new website, launched in February, is designed to ensure that more people find NVA when seeking information on vulvar pain or related conditions, such as pain with intercourse. In addition to being more visually engaging, the new site has a “search” feature, a major improvement.
  • The NVA awards the Dr. Stanley C. Marinoff Vulvodynia Career Development Award to two physicians, one specializing in pain management, the other in obstetrics/gynecology, to fund their research on pudendal neuralgia and lichen sclerosus, respectively.

2014

  • Phyllis Mate, M.A., co-founder and former executive director of NVA, becomes President of our Board of Directors.
  • Journal article published on NVA Vulvodynia Treatment Registry detailing psychosocial characteristics, quality of life and the pain experience of women with vulvodynia enrolled in the registry.
  • After a two month search, NVA appoints Lisa Goldstein, M.S., as our new executive director. Previously, she worked at the American College of Obstetricians and Gynecologists for 20 years, focusing on health issues for underserved women.
  • Vulvodynia featured in women’s health supplement to Los Angeles Times and on Media Planet website.
  • Dr. Andrew Goldstein, director of the Centers for Vulvovaginal Disorders in New York City and Washington, D.C., joins the NVA Medical Advisory Board.
  • NVA publishes Dr. Andrew Goldstein’s proposed diagnostic algorithm for vulvodynia. Four organizations, including NVA, are concerned that the current classification system (vestibulodynia, generalized vulvodynia) is inadequate and will co-sponsor a meeting of vulvodynia experts in spring 2015.

2013

  • Over 12,000 health care providers have completed our CME-accredited vulvodynia tutorial since 2009. It is the third most popular CME program on Medscape, which means that thousands of doctors have learned how to treat vulvodynia.
  • NVA awards a record number of research grants, earmarking an additional $210,000 for research in the next 18 months.
  • Dr. Pam Morrison, renowned women’s health physical therapist in New York City, joins Board of Directors.
  • Purdue Pharma awards NVA a generous grant to improve website and make it more user-friendly.

2012

  • NVA director testifies at first US Senate hearing on chronic pain.
  • NVA-funded studies yield data on new treatments for vulvodynia. (See pages 1 & 12 of Fall 2012 NVA News)
  • NVA’s diligent advocacy efforts result in a 1200% increase in NIH investment of vulvodynia research since 2009. (See page 3 of Fall 2012 NVA News)
  • NVA publishes first economic impact study on vulvodynia, which for the first time documents vulvodynia’s annual personal and national burden of $29-67 billion.
  • NVA expands Treatment Registry to include the investigation of pathophysiological mechanisms.
  • NVA awards two new research grants at UCLA and St. Louis University.
  • NVA helps to establish two new vulvar pain clinics in South Carolina and Poland.

2011

  • NIH doubles its research support to $6 million – a 200 percent increase over the prior year – and funds six new vulvodynia studies
  • NVA allocates 52 percent of its budget to funding medical research and awards six new grants.
  • NVA expands its Treatment Registry to eights enrollment sites in the US, and to include postmenopausal women and genetic analyses.
  • NVA funds the development of vulvar pain clinics in Ecuador and Connecticut.
  • NIH holds its third vulvodynia conference and develops a strategic research plan. NVA director serves on planning committee and leads a breakout session.
  • Institute of Medicine publishes the first report on chronic pain, Relieving Pain in America. NVA submits testimony, leading to the inclusion of vulvodynia in the report.
  • NVA director nominated to serve on first federal committee to address pain research: Interagency Pain Research Coordinating Committee.
  • NVA invited to serve on the Advisory Committee of the Analgesic Clinical Trial Translations, Innovations, Opportunities and Network (ACTTION).

2010

  • NVA allocates 50 percent of its annual budget to funding medical research, and funds two new research studies.
  • NVA funds two new Career Development Awards.
  • NVA expands Treatment Registry to five sites.
  • NVA publishes four new educational/support guides (self-help, partner, pregnancy/childbirth, disability).
  • NVA and the Chronic Pain Research Alliance launch the Campaign to End Chronic Pain in Women, release a ground-breaking report on the disparate treatment of women with chronic pain and hold a Capitol Hill briefing sponsored by the Congressional Women’s Caucus of the US House of Representatives.
  • Vulvodynia featured on the Dr. Oz Show and MTV’s True Life.

2009

  • NVA launches the first national multisite Vulvodynia Treatment Outcomes Registry.
  • NVA launches the first online learning program for women with vulvodynia, Everything You Need to Know About Vulvodynia.
  • NVA allocates 50 percent of its annual budget to funding medical research, and funds four new studies.
  • NVA funds two new Career Development Awards.
  • Vulvodynia is featured on ABC’s 20/20 and The Doctors.

2008

  • NVA and five other non-profit organizations form the Chronic Pain Research Alliance.
  • NVA attends six national health care conferences, reaching thousands of medical providers.
  • NVA launches the first economic impact study on vulvodynia.
  • For the second year, NVA allocates over 40 percent of its annual budget to funding medical research.
  • NVA funds three new research studies and one Career Development Award.

2007

  • NIH launches first-ever national vulvodynia awareness campaign, requested by Congress in 2005.
  • NVA executes its third annual National Advocacy and Awareness Week with great success.
  • NVA works with Representative Steve Israel (D-NY) on Congressional briefing on gynecological cancer and pain disorders.
  • NVA launches first-ever CME/CE accredited online tutorial for health care providers.
  • NVA exhibits at the national healthcare conferences of the American Pain Society and the American Academy of Nurse Practitioners.
  • Vulvodynia is featured on ABC’s primetime show, Private Practice, and in several popular magazines, including Prevention and Redbook.
  • NVA allocates over 40 percent of its annual budget to funding medical research, and awards record number of eight research grants.

2006

  • Eighth and ninth research studies funded by NIH at the University of Kansas and the University of North Carolina.
  • NVA executes its second annual National Advocacy and Awareness Week with great success (April 2006).
  • NVA works with Representative Ralph Regula, Chairman of the US House of Representations Appropriations Committee, to get language on vulvodynia include in the House’s Appropriations Report for the first time in history.
  • NVA meets with NIH to begin planning a national educational awareness campaign on vulvodynia that was requested by Congress in 2005.
  • American College of Obstetricians and Gynecologists published the first-ever Committee Opinion on vulvodynia in its clinical journal, Obstetrics & Gynecology.
  • NVA exhibits at the national healthcare conferences of the American College of Obstetricians and Gynecologists and the American Academy of Pain Management.
  • NVA establishes a new funding program for the medical community – The Dr. Stanley C. Marinoff Vulvodynia Career Development Award – in an effort to encourage interested faculty to pursue their clinical and/or academic interest in vulvodynia. NVA funds two applicants and helps to establish three new vulvar pain clinics in Michigan, New Jersey and Washington DC.
  • NVA raises record amount of money to support medical research and subsequently awards a record number of research grants.

2005

  • Seventh research study funded by the NIH at the University of Michigan.
  • NVA meets with the American College of Obstetricians and Gynecologists to discuss collaborative educational efforts.
  • NVA works with the Society for Women’s Health Research on Congressional briefing (June 2005).
  • NVA meets with NIH Pain Consortium to discuss current status of vulvodynia research.
  • NVA organizes its first National Advocacy and Awareness Week; women from 20 states meet with their Congresspersons to garner support for vulvodynia awareness and research (May 2005).
  • Vulvodynia featured in Woman’s Day and Fitness magazines (combined circulation of 5 million).

2004

  • NVA funds two studies focusing on the etiology and treatment of vulvodynia.
  • 3rd national conference on vulvodynia held in Atlanta, Georgia (NVA staff serve on planning committee).
  • NVA publishes 24-page educational guide for patients.
  • Vulvodynia featured in Good Housekeeping and Ladies’ Home Journal magazines (combined circulation of 9 million).
  • NVA exhibits at the national healthcare conferences of the American College of Obstetricians and Gynecologists, American Academy of Pain Medicine and the American Medical Women’s Association.

2003

  • 2nd NIH workshop held in April (NVA executive director and medical advisory board member serve on planning committee)
  • Dr. Bernard Harlow, Harvard epidemiologist, publishes data from his NIH-funded study, indicating that millions of American women suffer from chronic vulvar pain.
  • NVA funds two studies focusing on the etiology and treatment of dysesthetic vulvodynia.
  • NVA meets with staff from the Society for Women’s Health Research.
  • NVA briefs congressional health staffers about vulvodynia on Capitol Hill.
  • NVA participates in national pain awareness campaign, Partners for Understanding Pain.
  • NVA’s web site receives tens of thousands of visitors after vulvodynia is featured in news pieces on salon.com, National Women’s Health Report and WebMD.
  • NVA exhibits at the national healthcare conferences of the American Academy of Pain Medicine and the American Physical Therapy Association.

2002

  • Sixth research study funded by the NIH at the University of Rochester.
  • NVA’s executive director, Phyllis Mate, and medical advisory board member, Ursula Wesselmann, participate in planning of the NIH’s second symposium on vulvodynia to be held in Spring 2003.
  • NVA exhibits at three national health care conferences including the American Medical Women’s Association (AMWA), American Pain Society (APS) and the Congress on Women’s Health.
  • NVA facilitates meetings with representatives from the pharmaceutical industry to encourage drug development and inclusion of vulvodynia patients in clinical trials.
  • The first vulvodynia self-help book, The Vulvodynia Survival Guide, written by Howard Glazer, PhD and Gae Rodke, MD, is published.
  • The first comprehensive book on vulvovaginal health, The V Book by Elizabeth Stewart, MD, is published.

2001

  • NVA visits Capitol Hill twice to meet with Senator Tom Harkin and Representatives Bill Young and Ralph Regula.
  • NIH awards fifth research grant to scientist at Johns Hopkins University.
  • First preliminary prevalence data on vulvodynia is published in the American Journal of Obstetrics and Gynecology.
  • NVA meets with representatives from the pharmaceutical industry to encourage new drug development and inclusion of vulvar pain patients in clinical trials.
  • NVA participates in two national health care conferences including the American College of Obstetricians and Gynecologists (ACOG) annual meeting.
  • Vulvodynia featured on HBO’s Sex and the City.
  • Susanna Kaysen writes a personal memoir, The Camera My Mother Gave Me, on her experience with vulvar pain.

2000

  • First Request for Proposals (RFA) issued by the NIH, allocating $5 million for vulvodynia research over 5 years.
  • NIH awards first vulvodynia research grants to four scientists at Harvard University, Robert Wood Johnson, Yale University and the University of Michigan.
  • NVA awards $30,000 to two pilot studies at Cornell University and the University of Rochester.
  • Vulvodynia featured on the Oprah Winfrey Show and NVA receives 10,000 web site hits in less than one week following broadcast.

1999

  • CBS Television airs program featuring vulvodynia support group leader.
  • NVA exhibits educational materials to health care practitioners at first national health conference.

1998

  • Language on vulvodynia is included for the first time in the NIH Appropriations Report from the Department of Labor, Health and Human Services of the federal government.
  • First Program Announcement (PA) is issued by the NIH announcing their interest in funding vulvodynia research.
  • NVA awards second pilot research grant to scientist at the University of Rochester.

1997

  • NVA co-organizes the first vulvodynia symposium with the National Institutes of Health (NIH).
  • NVA awards first pilot research grant to scientist at Johns Hopkins University.
  • NVA meets with Senator Tom Harkin on Capitol Hill to request support for research funding from the NIH.

1995

  • NVA forms support network.
  • First visit to Capitol Hill is made to brief congressional staff members on vulvodynia and the urgent need for research funding.

1994

  • The NVA is founded by five vulvodynia patients in the Washington DC area.
  • Tax-exempt status is obtained by the federal government.