Ladies and VVS speak out! February 9, 2008

This is from NVA.org email that I received today:

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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 chris@nva.org with the following information:

 

-          Name

-          Age

-          Ethnicity

-          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,

 

Chris

 

—-

 

Christin Veasley

Associate Executive Director

National Vulvodynia Association

PO Box 4491

Silver Spring, MD  20914

401-398-0830

chris@nva.org

 

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)

Julie

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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 chris@nva.org.

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 (http://learn.nva.org) 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 everydayhealth.com and earthtimes.org 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 HealthNewsDigest.com, 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 aprilb@esi-dc.com. 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 www.healthywomen.org 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 on VVS Surgery November 13, 2007

 Note: This is the best article I’ve seen so far regarding this surgery, which I personally have had twice. I found it on careplace.com, where NVVO has recently formed an online group. Come join if you’d like!

- Julie

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What is Vestibulectomy?

Skinning vestibulectomy with perineoplasty and vaginal advancement is still a gold standard for women with vulvar vestibulitis.

This is a procedure, which removes the tender areas of the skin within the vestibule (the area between the lower vagina and just within the vulva). The amount of tissue removed is variable and depends on your symptoms and the surgeon in charge of your care. Sometimes only isolated areas of skin are removed from the lower part of the vestibule and in other women with extensive symptoms, larger areas of the vestibule can be removed up to the front of the vagina near the urethra, where you pass urine. Other procedures are less commonly performed and these include removal of the labial skin and the skin near the back passage. The procedures are usually carried out in hospital under general anaesthetic and take around 10-40 minutes, depending on the surgeon. Dissolvable stitches are usually used to cover the defects where the tender areas of skin were removed. After the operation you might be sent home either the same day or a day or so later. Obviously you need time to recover from this and this is variable — anything from 6-12 weeks. Your doctor may advise use of other treatments following surgery and this might include the use of creams (steroid creams, emollients), the use of vaginal dilators (to prevent scar tissue reforming) and a review by a pain management team or possibly a psychosexual counsellor.

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!

Julie