Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

NVA Study November 13, 2018

Participants Needed for a Study Designed to Evaluate the Efficacy and Safety of Dysport in Vulvodynia Patients.

If you are a woman 18 to 45 years of age who has had vulvodynia for at least 6 months, but for no more than 15 years, and never had a vaginal delivery including attempted vaginal delivery, you may be eligible to participate in this study. Participants must have provoked pain at the vestibule on a Q-tip test. Patients with deep pain during intercourse are not eligible to participate in this study. Participants also cannot have genitourinary conditions which may interfere with the study, previous surgery that according to investigator’s judgement may impact the study outcome (including but not limited to hysterectomy, vestibulectomy, urologic surgery, perianal surgery) or genital trauma or mutilation/cutting.

This study will be conducted in the following locations:
• San Diego, California
• Washington, DC
• Kansas City, Missouri
• Omaha, Nebraska
• New Brunswick, New Jersey
• Bryn Mawr, Pennsylvania
• Nashville, Tennessee
• Seattle, Washington
If you are interested in participating, please email For more information on the study, please go to


UCLA Brain Imaging Study June 12, 2012

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UCLA Brain Imaging Study


Women between the ages of 18 and 55 who have been diagnosed with Provoked Vestibulodynia (formerly vulvar vestibulitis syndrome), or are experiencing chronic pain at the vaginal opening with/without intercourse may be eligible to participate in this study. Women must be right-handed and cannot be pregnant. Participation involves two visits over approximately 2-4 weeks.  Dr. Emeran Mayer at the UCLA Center for Neurobiology of Stress ( will conduct brain imaging tests (fMRI) to understand how chronic vulvar pain may affect the brain’s activity and structure.  Participants can earn up to $75 and will receive a picture of their brain.


For more information, please contact Dr. Andrea Rapkin (310-825-6963).



Ladies and VVS speak out! February 9, 2008

This is from email that I received today:



Dear NVA Friend,


Producers at The Oprah Winfrey Show are working on a possible upcoming show on vulvodynia.


If you are a single woman in your 20s or 30s who is worried that you may not be able to get married or have children in the future because of your vulvodynia and/or a non-Caucasian women of any age who is willing to be on the show, as soon as possible, send an email to with the following information:





          Summary of your history with vulvodynia, i.e., When were you diagnosed?  How many doctors did you visit before receiving a correct diagnosis?  Have any treatments helped you?  Is your vulvodynia better, worse or the same?

          How has vulvodynia affected your ability to pursue a career and/or engage in social activities?  How has vulvodynia affected your sex life, marriage or relationships? 

          Contact information – phone number and email address

          Current photo (attachment)

          Statement that you give NVA permission to forward your contact information to producers at The Oprah Winfrey Show. 


Please try to limit your summary to 1-2 paragraphs. 


Thanks very much,






Christin Veasley

Associate Executive Director

National Vulvodynia Association

PO Box 4491

Silver Spring, MD  20914




News from NVA – and "our own" Dr LeClair (Portland OR) February 8, 2008

This is from NVA’s monthly (free) newsletter. It has some interesting stuff….including news about Dr Catherine LeClair, my doctor!! (and doctor of a few other women I know who are suffering from VVS)



This e-newsletter is adapted from the winter 2007/2008 issue of the NVA News, published by the National Vulvodynia Association. It includes just a few of several important articles from the printed newsletter. A complete table of contents can be found below. If you are not a current NVA donor, you can subscribe to the full printed version of this newsletter on NVA’s web site. Please direct any comments, including a desire to unsubscribe to

In this issue:
NVA Year-End Review
NIH Launches Vulvodynia Awarenes Campaign
NVA Joins Forces with Gynecologic Cancer Activists
Media Coverage of Vuvlodynia on the Rise
NVA Funds Record Number of Research Studies
Table of Contents – Winter 2007/2008 NVA News
Support the NVA

NVA Year-End Review

NVA gained more ground this past year than ever before in its mission to fund research, educate the medical community and promote public awareness of vulvodynia. We thank everyone who made a donation for contributing to the following accomplishments.

NVA’s Success on Capitol Hill

In spring 2007, NVA successfully launched its third consecutive national advocacy campaign. NVA supporters met with a majority of the Senators serving on the Health Appropriations Subcommittee and Representative Nancy Pelosi (D-CA), the first female Speaker of the House. In addition, thousands of advocates sent letters and e-mails describing how vulvodynia impacts their lives to more than 400 Congressional representatives.

NVA staff targeted key members of Congress serving on health-related committees that oversee NIH appropriations. As a result of this effort, strong language on vulvodynia was included in both the House and Senate 2008 NIH Appropriations reports. After NVA’s meeting with Rep. Lois Capps (D-CA), co-chair of the women’s issues caucus, and Rep. Tammy Baldwin (D-WI), co-chair of the task force on women’s health, Capps and Baldwin appealed to Rep. Steve Israel (D-NY), co-chair of the cancer caucus, to include vulvodynia in an upcoming gynecological cancer briefing. Rep. Israel agreed and NVA became an active participant in the planning of the September 25th gynecological disorders briefing (see NVA Joins Forces with Gynecologic Cancer Activists below). Rep. Patrick Kennedy (D-RI), from Ms. Veasley’s home state, attended the briefing to show his support for women’s health; Rep. Kennedy and Ms. Veasley are now discussing the possibility of a Rhode Island women’s health forum in 2008. NVA also took the lead in encouraging joint meetings with the Interstitial Cystitis Association and Senator Barbara Boxer (D-CA), to discuss the inclusion of urogynecological disorders in a women’s health bill that Sen. Boxer and other female Senators plan to introduce in 2008.

NVA has been lobbying for vulvodynia research funding and a national vulvodynia public awareness campaign for many years. Two years ago, Congress included language in the NIH Appropriations report directing the NIH to develop a National Vulvodynia Awareness Campaign, in coordination with the NVA. On October 24th, after more than a year of planning, the NIH Office of Research on Women’s Health (ORWH) launched the campaign at the National Press Club in Washington, DC (see NIH Launches Vulvodynia Awareness Campaign below).

Online Tutorial for Healthcare Professionals

As a result of generous support from The Patty Brisben Foundation, NVA was able to revise and update its online tutorial for healthcare professionals ( and add CME/CE accreditation to the program. It is the first online vulvodynia course to offer continuing education credits.

Medical Research Grants

As a result of successful fund-raising appeals, NVA has awarded more medical research grants this year than ever before. Until 2004, NVA was only able to fund one study per year, but since then, we’ve doubled the number of grants awarded each year. In 2007 alone, NVA awarded nine new grants. Several of NVA’s prior grant recipients have used their pilot data to obtain multi-million dollar NIH funding. Detailed summaries of all these studies can be viewed on NVA’s web site.

Dr. Stanley C. Marinoff Career Development Award

In 2006, NVA created the Dr. Stanley C. Marinoff Vulvodynia Career Development Award to encourage interested faculty to pursue a clinical and/or academic interest in vulvodynia. The award provides seed money to conduct medical research, write a publication, or develop a vulvar pain clinic. The ultimate goal of this program is to increase the number of knowledgeable and qualified clinicians and scientists in the vulvodynia field. For the second consecutive year, NVA solicited applications from the medical/scientific community and received several excellent proposals. NVA will announce an award recipient in early 2008.

Other Outreach Activities

The NVA exhibited at the 2007 national healthcare conferences of the American Pain Society and the American Academy of Nurse Practitioners. NVA staff and volunteers disseminated hundreds of educational packets and answered health care providers’ questions.

In November, NVA began working on an economic impact, or cost of illness, survey with a social worker from the Walter Reed Army Medical Center. The survey will estimate both the direct and indirect costs of vulvodynia, including costs associated with medical appointments, prescription medications, over-the-counter remedies and time lost to work. Information gathered in this survey will aid NVA in its future Capitol Hill efforts.

Because of the many exciting developments in 2007, vulvodynia and the NVA were featured in a variety of media venues,including Redbook, Health and Prevention magazines, Canada‘s Globe & Mail Newspaper, CNN Headline News, ABC’s hit television series, Private Practice, and multiple health websites (see Media Coverage on the Rise below).

Ongoing Programs

In addition to the initiatives described above, NVA maintains several ongoing programs and activities including, but not limited to, the following.

NVA has published 41 issues of its printed newsletter, NVA News, containing detailed articles by medical experts on the diagnosis and treatment of vulvodynia; the newsletter also features other articles relevant to women with vulvodynia, such as maintaining sexual intimacy, managing pregnancy and childbirth, and coping with chronic pain. Our newsletter is distributed to patients and health care providers, as well as other important contacts, including members of Congress and NIH administrators.

First published in 2004, the demand for NVA’s self-help guide, I Have Vulvodynia. What Do I Need to Know?, continues to grow. This educational guide provides detailed information on vulvovaginal self-care, diagnosis and treatment of vulvodynia, and coping strategies. It is available to women who contact us directly and to health care providers who order copies for their patients.

NVA has disseminated 26 issues of its electronic newsletter, NVA Research Update, to the medical and scientific community. This quarterly newsletter summarizes recent medical journal publications and includes periodic updates on upcoming conferences and research funding opportunities.

In an effort to keep members informed about recent advances in research, publicity and Capitol Hill efforts, NVA sends its electronic newsletter, NVA Update, to patients, their family and friends, and other interested parties. These updates include ‘action alerts,” which notify NVA contacts that their participation is needed at a certain time.

Since its inception, NVA has developed and maintained an international support network as a resource for patients in need. Our network provides phone and e-mail support in many areas, and monthly support group meetings in some locations. Currently, we have about 100 support leaders in place in the United States, Canada and several other countries.

NIH Launches Vulvodynia Awareness Campaign

After years of urging US Senators and Representatives to help NVA educate the public about vulvodynia, Congress mandated the National Institutes of Health (NIH) to develop the first National Vulvodynia Awareness Campaign. This campaign targets primary health care professionals and the general public, as well as vulvodynia patients.

On October 24, 2007, after more than a year of preparation, Vivian Pinn, MD, director of the NIH Office of Research on Women’s Health launched the campaign at the National Press Club in Washington, DC. The press conference was attended by representatives from more than 30 partnering organizations and government agencies. The diverse group of partnering organizations includes the National Women’s Health Resource Center, the American College of Obstetricians and Gynecologists, the Society for Women’s Health Research, the Center for Disease Control, the National Black Nurses Association and the National Hispanic Health Association.

Dr. Pinn outlined the goals of the outreach campaign and introduced the panel of eight speakers. Among the speakers were Hope Haefner, MD, director of the University of Michigan‘s Center for Vulvar Diseases; Bernard Harlow, PhD, chair of the University of Minnesota‘s Division of Epidemiology and Community Health; Candace Brown, PharmD, MSN, professor of pharmacy, psychiatry and obstetrics and gynecology at the University of Tennessee Medical School; and Christin Veasley, NVA’s Associate Executive Director. Dr. Harlow presented the findings of the NIH-funded vulvodynia prevalence study, and Drs. Haefner and Brown described vulvodynia’s symptoms, diagnosis and treatment. The emotional high point of the event was Christin Veasley’s first-hand account of her eight year struggle with vulvodynia. You can read Ms. Veasley’s speech or watch a videocast of the press conference on ORWH’s web site.

The NVA, the NIH Office of Research on Women’s Health and the National Women’s Health Resource Center have been leading the publicity campaign by contacting editors and writers at popular magazines, newspapers, and health and news websites. Following the launch event, for example, many internet sites, such as and featured articles on vulvodynia and Dr. Laura Berman discussed chronic vulvar pain on her Yahoo health blog, The Art of Intimacy. Reporter Darla Carter wrote an article on vulvodynia for the Louisville Courier Journal and Denise Oliviera, a New York journalist and NVA member, wrote an excellent piece for the New York City Independent Media Center. One of NVA’s strongest proponents for the past 10 years has been Phyllis Greenberger, MSW, president of the Society for Women’s Health Research (SWHR). Shortly after the campaign launch, Dr. Jennifer Wider of the SWHR wrote an article on vulvodynia for, which was subsequently picked up by numerous web sites, including Science Daily, AHN and MedHeadlines. In December, Dr. Pinn focused her monthly PodCast, Pinn Point on Women’s Health, on vulvodynia. You can download the PodCast or read the transcript on ORWH’s web site.

If you would like to receive a press kit on vulvodynia, please e-mail You can order the Vulvodynia Awareness Campaign information packet online or by contacting the NIH Resource Center at 1-800-370-2943 or the National Women’s Health Resource Center at or 1-877-986-9472.

NVA Joins Forces with Gynecologic Cancer Activists

To raise Congressional awareness of gynecological cancer and pain disorders, the US House of Representatives’ Cancer and Women’s Issues Caucuses organized a briefing held September 25, 2007. The briefing was hosted by Representative Steve Israel (D-NY), co-chair of the Cancer Caucus.

Emmy-nominated actress Fran Drescher described her personal experience overcoming uterine cancer and the creation of the Cancer Schmancer Movement. Sherry Salway Black, executive director of the Ovarian Cancer National Alliance, discussed her battle with ovarian cancer and Dr. Richard Schlegal, chair of the pathology department at Georgetown University Medical Center, gave an overview of cervical cancer and his work on the new HPV vaccine. NVA’s associate executive director, Christin Veasley, focused her presentation on vulvodynia, specifically addressing the problem of misdiagnosis, the stigma associated with having a chronic vulvovaginal disorder and the lack of research on treatments. She closed by outlining what Congress can do to help women with gynecologic pain disorders. You can read NVA’s presentation here.

Media Coverage of Vulvodynia on the Rise

A prime-time television show, a cable talk show, the country’s most influential newspaper and two popular women’s magazines have all tackled the subject of vulvodynia in the last six months!

In October, NVA approached renowned health columnist, Jane Brody, to write an article on vulvodynia. Our conversations in the months following led to the article, New Insights into Genital Pain in Women, that appeared in the January 29, 2008 edition of The New York Times. In addition to the paper’s daily circulation of 1.1 million, Ms. Brody’s column appears in nearly one hundred other newspapers around the world. In the weeks following, the NVA and Ms. Brody have been flooded with letters from grateful readers. One reader wrote, “Having chronic pain is terrible, but not being believed is unbearable. Thanks for sending me this wonderful reminder that I am not alone, and I am not imaging this condition.”

On October 10th, ABC’s new hit show viewed by more than 12 million, Private Practice, dealt with vulvodynia by featuring a character suffering from a combination of vaginismus and vulvar vestibulitis. The show accurately portrayed some of the symptoms of vestibulitis, but depicted an unrealistic “quick fix” for the condition. NVA issued a media release on the show’s inaccurate depiction of the condition.

On November 5th, Dr. Debby Herbenick, associate director of the Center for Sexual Health Promotion at Indiana University (and longtime NVA supporter), was a guest on The Tyra Banks Show. Watched by more than 2 million people every week, the show, What’s Up Down There?, covered “everything vulva and vagina,” including vulvovaginal anatomy, self-examination, vulvar pain and other conditions that affect genital health. Vulvar pain was only briefly addressed, but the show sent a very powerful message to viewers – that women should no longer feel embarrassed to discuss their genital health.

This past fall, vulvodynia was included in two excellent magazine articles on women’s health. NVA’s Christin Veasley was interviewed for the Redbook September 2007 article titled, Your (Very Personal) Health at 20, 30, 40 and 50. This article dealt with painful sexual intercourse and eleven health conditions, including pelvic prolapse, yeast infection, bacterial infection and incontinence. Prevention magazine’s November 2007 issue also contained an informative article titled, Help for Intimate Pain. In addition to its discussion of vulvodynia, the article covered endometriosis, interstitial cystitis, pelvic floor tension myalgia and pelvic congestion syndrome.

Combined, the above articles and television shows have reached tens of millions of people. Currently, NVA is helping writers prepare articles that will appear in popular magazines and health web sites this spring and summer.

NVA Funds Record Number of Research Studies

In the early years, NVA was able to fund only one pilot research study each year. As the organization has grown, we have focused more and more on raising money specifically for research grants. The result is that we have been able to double the number of research grants awarded every year since 2004. This past year, NVA was able to award nine research grants for studies on vulvar vestibulitis or generalized vulvodynia. This article will describe all studies NVA funded between July and December 2007. Summaries of studies funded earlier in the year, and in previous years, can be viewed on NVA’s web site.

Multilevel Nerve Blocks in the Treatment of Generalized Vulvodynia

In the summer of 2007, a grant was awarded to a multidisciplinary team at the UCLA School of Medicine to study the efficacy of multilevel nerve blocks in women with generalized vulvodynia. With this grant, gynecologist Dr. Andrea Rapkin and anesthesiologist Dr. John McDonald will use the same series of nerve blocks that produced successful outcomes in their earlier study with vulvar vestibulitis patients. Their hypothesis is that generalized vulvodynia involves abnormalities in the nervous system that can be effectively treated with local anesthetic nerve blocks. The study requires multiple treatment sessions. During each visit, a patient receives three nerve blocks administered at different levels of the nervous system: a caudal (spinal) block, bilateral pudendal block and a vulvar block targeting the perineal branch of the pudendal nerve. Patients will receive up to five treatment sessions, two to three weeks apart, and be followed for 12 months after their last treatment.

Compounding Pharmacy Trends in Women’s Health

Given the lack of consensus guidelines and specific medications for the treatment of vulvodynia, many practitioners rely on independent compounding pharmacies to formulate topical medications for their patients. Compounding pharmacies are in jeopardy because a bill recently introduced in Congress, The Safe Drug Compounding Act of 2007, would authorize federal regulation of their practices. Therefore, NVA provided modest funding to Denniz Zolnoun, MD, assistant professor at the University of North Carolina-Chapel Hill School of Medicine, who proposed to conduct and analyze a survey of the practice trends in compounding pharmacies. Although the importance of compounded medications in treating vulvodynia is commonly acknowledged by specialists in the field, this survey will provide the objective data needed to empower advocates representing women’s health interests. One of the study’s main goals is to gather information on medications made by these pharmacies that are critical to the treatment of women with vulvodynia. Zolnoun distributed a questionnaire to more than 450 compounding pharmacies and will analyze the survey data to: (1) demonstrate the importance of compounding pharmacies in the provision of women’s health services; (2) establish the prevalence of medications compounded for vulvodynia, and (3) identify the types and combinations of medications these pharmacies make for the treatment of vulvodynia.

Hormonal Influences in the Etiology of Vulvar Vestibulitis

This past fall, NVA awarded a grant to Catherine Leclair, MD, director of the vulvar health program, and Terry Morgan, MD, PhD, assistant professor of pathology, both of Oregon Health and Science University. Dr. Leclair was the 2006 recipient of NVA’s first Dr.Stanley C. Marinoff Vulvodynia Career Development Award. With this award, LeClair began investigating possible hormonal influences in the etiology of vulvar vestibulitis (VVS).

With their current NVA grant, Drs. Leclair and Morgan will continue their study of the underlying mechanism responsible for the increase in nerve fiber density in the vestibules of women with VVS. They will also investigate whether a mild chronic inflammation involving mast cells (cells involved in inflammatory and allergic reactions) plays a role in the initiation and/or perpetuation of VVS.

Recent research has shown that women with VVS have a reduced number of estrogen receptors in their vestibular tissue. According to Leclair and Morgan, one consequence of this decrease may be an upregulation of epidermal growth factor receptor (EGFR). (Upregulation means that a cell increases the number of receptors to a certain hormone or neurotransmitter to improve its sensitivity to this molecule.) LeClair and Morgan hypothesize that abnormal estrogen receptor down-regulation and/or androgen receptor up-regulation may lead to an increase in EGFR expression and the cascade of events culminating in VVS. Their long term goal is to determine the underlying mechanisms responsible for the initiation of vestibulitis and develop treatment strategies that will eliminate the need for surgery.

Genetic Predisposition in Vestibulodynia (Vulvar Vestibulitis)

Longtime clinical researcher, Jacob Bornstein, MD, chief of the department of obstetrics and gynecology at Western Galilee Hospital, Nahariya, Israel, and associate professor, Rappaport Faculty of Medicine, Hatechnion, Haifa, received his first NVA research grant. In this study, Dr. Bornstein and genetics researcher, Dr. Tzipora Falik, are investigating associations between vestibulodynia and genes that transcribe proteins, which either have been found, or are thought to be involved in, the abnormal tissue changes seen in this disorder. Specifically, they will study a number of polymorphisms (variations) of three genes coding for molecules involved in the breakdown of vestibular mast cells and increased vestibular nerve fiber growth: heparanase, vanilloid receptor-1 (TRPV1), and nerve growth factor (NGF). The subjects for this pilot study are women suffering from severe vulvar vestibulitis who have experienced pain since their first episode of sexual intercourse. This study is an important exploratory component of a larger-scale study that will help delineate genetic susceptibility to vestibulodynia, or vulvar vestibulitis, ultimately paving the way for individualized treatment.

Research Grants Awarded in December 2007

Because the quality of last year’s research proposals was outstanding, NVA made a special fundraising appeal to its donors in November 2007. The response was so successful that NVA was able to award two additional research grants in late December. Drs. Linda McLean and Caroline Pukall, of Queen’s University in Kingston, Ontario, received a grant to study pelvic floor muscle function in women with vulvodynia, and Dr. William Ledger, a pioneer in the treatment of vulvodynia and chairman emeritus of the department of obstetrics and gynecology at New York Presbyterian Hospital, was awarded a grant to further his study of vulvar vestibulitis. Based on the findings of his collaborative work with Dr. Steven Witkin at Cornell University‘s Weill Medical College, Dr. Ledger will test a novel treatment for vulvar vestibulitis patients. We will include summaries of these studies in our next newsletter.

Complete Table of Contents (NVA News: Winter 2007/08)

Differentiating Vulvodynia and Pudendal Neuralgia by Richard Marvel, MD

Multilevel Nerve Blocks in the Treatment of Vulvodynia by Andrea Rapkin, MD and John McDonald, MD

NIH Launches Vulvodynia Awareness Campaign

NVA Joins Forces with Gynecologic Cancer Activists

NVA’s Christin Veasley Speaks at National Press Club

NVA Funds Record Number of Research Studies

New CME/CE Online Tutorial on Chronic Vulvar Pain

Support the NVA

Founded in 1994, the NVA is a nonprofit organization dedicated to improving the lives of women who suffer from chronic vulvar pain. The NVA is one of the only organizations in the world that provides educational and supportive services to women suffering from vulvodynia as well as health care providers who treat vulvar disorders. The overwhelming majority of NVA’s financial support comes from women who suffer from vulvodynia as well as their family members and friends. We need your support! Please consider joining the NVA or making a donation today! For more information, please visit NVA’s web site.


An Article: 14 Different Treatments for VVS November 27, 2007

This article is great! Just found it today.

I tell ya – where were these articles a couple of years ago?

Where were these studies and findings 5 years ago, even 15 years ago or longer?

It’s amazing to see how far we’ve come, but we have so very long yet to go.

Hopefully we will make a difference with NVVO and you ladies out there speaking out and spreading the word about better treatments, diagnoses, and research…and support among other women who are feeling alone and weird with this horrible crappy chronic condition known as Vulvar Vestibulitis – Vulvodynia – Vestibulodynia.



14 Different Treatments for Vulvar Vestibulits Syndrome

Written by Andrew Goldstein, MD   

Friday, 27 April 2007

As Awareness Grows, So does Diagnosis and Treatments:Vulvar vestibulitis syndrome (VVS) is a subset of vulvodynia that is characterized by severe pain during attempted vaginal penetration to pressure localized to the vulvar vestibule (see diagram), and redness(erythema) of the vulvar vestibule. A subset of vulvar vestibulitis is called vestibulodynia, which combines the three symptoms with constant pain at the vestibule. Increased awareness of VVS has led to exciting new research. This review will examine current concepts regarding the diagnosis, etiology, and treatment of VVS.

Until recently, neither the cause of VVS nor what causes the underlying pain was known. However, in the last few years, increased awareness of vulvar vestibulitis syndrome (VVS) has led to exciting new research. This research focuses on many different aspects of VVS including possible genetic, infectious or allergic causes, and on multiple treatment regimens. Even basic assumptions of early researchers have been questioned, leading to a greater understanding of VVS.

We now know that women with VVS feel pain at the vestibule because they have an increased number of nerve endings in the vestibule. A woman with VVS can have up 30 times the number of nerve endings (3000%) as compared to women who do not have sexual pain. The nerve endings are called nociceptors. Nociceptors are the nerve endings that are responsible for sensing pain and stretch.Image

So what caused this increase in the number of nerve endings?

Women with Primary VVS are women who have pain ever since their first attempt at intercourse.  In fact, most women with primary VVS have had pain when they first started to use tampons. Approximately 20-25% of women with VVS have primary VVS. Women with primary VVS almost never have had completely pain free intercourse. The current hypothesis is that the neuronal proliferation in primary VVS is a congenital problem (birth defect). Current evidence supporting this hypothesis is that the tissue of the vestibule is completely different tissue than the tissue of the vaginal above the hymen (embryologically, morphologically, and histologically). Therefore, it is plausible that a woman could have a congenital problem in the vestibule without having any problem in the vagina. This hypothesis is further supported by the fact that there is a very high concordance of women with VVS and interstitial cystitis (a similar pain syndrome of the bladder and urethra).  The bladder and urethra are derived from the same tissue as the vestibule.

Women with secondary VVS have pain beginning after some period of pain free intercourse. Women with secondary VVS also have a proliferation of nerve endings, but unlike women with primary VVS, they are not born with it. Instead, women with secondary VVS have acquired these nerve endings. To explain this unfortunate acquisition is slightly more complicated than in primary VVS. Over the last 5 years scientist have been pasting together several different pieces of information to get a congruent explanation of secondary VVS. The pieces of information are as follows 1) women with VVS have much more sensitive skin throughout their whole body as compared to women without VVS. 2)

In addition to a proliferation of nerve endings in the vestibule, there is a proliferation of mast cells in the vestibule. Mast cells are the white blood cells that are responsible for allergic and inflammatory reactions. 3) Up to 50% of women with VVS have a defect in one of 2 genes (IL1-RA, IL-1 beta) that are responsible for limiting inflammatory conditions in the body. If we put these (and other) pieces of information together, a new hypothesis is emerging. (Actually, we must give credit to Dr. Stanley Marinoff who first published this hypothesis in 1986- long before there was data to support it.)

VVS may be initiated by an allergic reaction to a chemical irritant in the vulvar vestibule. This irritation – possibly to topical antifungals, other medications, or chemicals- causes mast cells to migrate to the vestibule. If the irritation persists, activation of mast cells leads to an uncontrolled proliferation of nociceptors in the mucosa.

This hypothesis explains why up to 80% of women with VVS complain of an acute onset of symptoms that includes burning and itching, which then progress to severe pain on touch. The pain on touch often then persists even after the initial symptoms of itching and burning disappear. Of course, further studies are ongoing to assess the validity of this hypothesis.

Treatments of VVS

Unfortunately, studies examining the possible treatments of VVS have not been as numerous as studies to identify the cause of this disease. The two most widely studied treatments for VVS are surgery (25 studies), interferon (6 studies) and biofeedback (3 studies). In addition, there are many other treatments that are being used without supporting medical literature. While this does not invalidate any of these treatments, patients and there practitioners are left with a “lets try it and see” approach that can be very frustrating (and potentially dangerous.)

1) Tricyclic antidepressants (amitriptyline, desipramine, nortriptyline).  There have been no published studies on TCA use in VVS. However is there is currently an ongoing NIH funded study examining desipramine (with and without lidocaine) for VVS. The current theory behind using TCAs for VVS is that they “numb nerves” and VVS is a disease of too many nerves. It is not known if treatment of VVS with TCA is curative or just palliative.

2) Lidocaine is a topical anesthetic. Traditionally, lidocaine has been prescribed to numb the vestibule enough to have intercourse. More recently, investigators have been examining the possibility that lidocaine- if applied for long periods of time may cause the nerves to regress or become permanently numb. A study published in July 2003 by Zolnoun and colleagues showed that long-term, nightly application of 5% lidocaine ointment significantly improved the ability to have intercourse. It is not known how long this effect will last after stopping the lidocaine.

3) Estrogen: While there have been a few reported cases that estrogen can be used to treat VVS, no studies have been published. It is possible that estrogen treats VVS by numbing nerves or by improving the health of the vestibular tissue. In addition, it is possible that a woman has been incorrectly diagnosed with VVS and has instead a condition called atrophic vaginitis that is caused by a lack of estrogen. Using topical estrogen will dramatically improve atrophic vaginitis.

4) Low oxalate diet: In 1992 an organization was founded called the Vulvar Pain Foundation (VPF) ( that was founded on the belief that the symptoms of VVS were caused by very minute crystal of oxalic acid in the urine. Oxalic acid is found in many foods, so they proposed “low oxalate diet” that limits foods that have high levels of oxalate (an organic acid). In addition to the low oxalate diet, they suggest adding calcium citrate supplements to help neutralize the acid. The VPF claims that many women have been helped with this treatment approach. Unfortunately, the only study examining this theory showed that women with VVS have the same amount of oxalate crystals in their urine as women without VVS.

5,6,7) Biofeedback, Intra-vaginal physical therapy, BOTOX:  Some women with VVS -especially those with vestibulodynia and dysesthetic vulvodynia- have developed pelvic floor dysfunction (PFD). PFD is when the muscles of the pelvis become very tight and tender. This type of pain, called myelofascial pain, can be very severe. Biofeedback is a technique by which you use a probe in the vagina to learn to control and relax the muscle of the pelvic floor. Intravaginal physical therapy is akin to a massage of the pelvic floor muscles to slowly stretch and relax them. BOTOX is botulism toxin that has been approved by the FDA for the treatment of wrinkles. BOTOX works by temporarily paralyzing muscle in which it is injected. Ongoing research is examining if injections of BOTOX into the pelvic floor muscles can treat PFD and thereby help VVS. I suggest that you go to Dr. Howard Glazer’s website ( for a discussion about biofeedback and Talli Rosenbaum’s website ( for an in depth discussion of intravaginal physical therapy.

8. Steroids: A small study of 15 women in 2001 examined injections of steroids combined with lidocaine for VVS in which 32% were cured and 36% were significantly improved. No data exists to show if this was cure or just temporary palliation of the symptoms of VVS.  More recent evidence suggests that VVS is not caused by chronic inflammation and therefore steroids should not be the correct treatment. To date, no larger, or long term, studies have been done.   The paper did not distinguish between primary and secondary VVS.

9) Interferon: Interferon (INF) is a naturally occurring biological chemical that improves the immune system and decreases inflammation. INF was first proposed as a treatment for VVS in 1989. The rational for using INF was the hypothesis that the cause of VVS was human papillomavirus (HPV) infection. However, more recent studies have cast doubts on this hypothesis. Several studies, including a large study by this author of 214 patients treated with a series of 12 intra-vestibular injections of INF showed an overall 42% success rate. Patients were more likely to have success if they had secondary VVS for less than three years. Very few patients with primary VS were improved. As INF is a very potent mast cell inhibitor, it is possible that this is why INF may work for VVS.

10) Nitroglycerine: a small pilot study was published in 2002 that examined the affect of application of nitroglycerine cream for the treatment of vulvodynia.

No distinction was made between women with VVS and dysesthetic vulvodynia. While the majority of women had decreased pain during intercourse, most participants had headaches associated with the nitroglycerine. In addition, it is not know if this is a cure or temporary palliation of symptoms. Lastly, no distinction is made between primary and secondary VVS.

11) Antihistamines: There have not been any studies examining anti-histamines for the treatment of VVS. However some practitioners do use them as part of a treatment regimen. A similar medication, Cromolyn sodium that inhibits mast cells did not help women with VVS in a placebo-controlled trial.

12) Capsaicin:  Capsaicin is the purified extracted alkaloid from red chili peppers (capsicums). This is the substance that makes chili peppers hot. The purified form capsaicin has been found to relieve pain by reducing substance P, which is found at nerve endings and is involved in transmitting pain signals to the brain. There has been only one published study about using capsaicin for VVS, but it is also being used at several referral centers including the Mayo clinic. Anecdotally, this is a very painful treatment.

13) Atropine: Atropine is a medication that affects blood vessels and has a wide range of uses in anesthesia, ophthalmology, and is even used as a treatment for “nerve gas.” While there have not been any published studies using atropine for VVS, some practitioners prescribe a 2% atropine cream to be applied daily. Success rates are not known.

14) Surgery – Vulvar vestibulectomy with vaginal advancement. The theory behind surgery is that the underlying problem with VVS is that there are too many nerve endings in a very small area of tissue (about one square inch) and if the mucosa (skin) with these abnormal nerve endings is removed and replaced the healthy tissue, that this will solve the problem. There have been 25 published studies examining this procedure for VVS and 21 of the 25 have shown greater than an 80% success with the surgery. Unfortunately, surgery has gotten a bad reputation.

If surgery is not done by an expert (who has done many of these operations) there can be significant side effects including infections and scar tissue formation. In addition, if not enough tissue is removed, there can be areas that still hurt after surgery. In fact, initial success rates for this operation were only about 50-60%, but continued advance in surgical technique has pushed the success rate to almost 90%. In one study, more than 85% of women who had the surgery would recommend the surgery to another woman similarly affected.

Many authors suggest that surgery should only be used as a “last resort.” However, more recently, as the success rates are now so high, many experts in the field suggest surgery after failing 1-3 alternatives discussed above. Lastly, many experts also believe that because primary VVS is probably a congenital operation, surgery is the only treatment that will work for primary VVS.


Last Updated ( Wednesday, 05 September 2007 )



Vagina Updates October 2, 2007

Latest news:

We will soon be finishing our business cards and NVVO brochures. I am going to set up a landline (or is it LAN line??) at my new apartment when I move on Oct 12. It will be our official NVVO phone, woo woo! Katie E is totally awesome, helping me figure out this Blog site stuff. Katie S is in New York, and WOW what an experience for her! She’ll miss the Siren Nation event though. 😦  Sarah…where is Sarah? She’s been busy with the paperwork and filings for our group. I’m discussing our brochure layout with my friend Sara who is a graphic designer. Gotta get this stuff squared away! And once the basics are done (registered everywhere we are supposed to be, getting business cards and brochures, etc)…we will be ROLLIN’!! 

This is absolutely fantastic. We are gonna make a difference. We already are, actually!