Winter 2018 Aspects of Vulvodynia from a Swedish Perspectve

By Nina Bohm-Starke, M.D., Ph.D.

Nina Bohm-Starke, M.D., Ph.D., is an associate professor of obstetrics and gynecology at Karolinska Insttutet, Danderyd Hospital in Stockholm, Sweden. She is a member of the Internatonal Society for the Study of Vulvovaginal Disease.

In 2000, Eva Rylander, M.D., and I established a vul- provoked vestbulodynia (PVD) or localized provoked var clinic at Danderyd Hospital in Stockholm, because vulvodynia.) Dr. Rylander was very concerned about we thought that a diferent approach for treatng these young VVS patents, because they sufered a women with vulvodynia was needed. Professor great deal and were difcult to treat. In the 1990s, Rylander was a colposcopist specializing in vulvovagi- surgery was the only viable treatment for the dis- nal disease, so it was natural for her to also examine order. Even though many patents improved with the vulva. Since the late 1980s she had observed an surgery, others didn’t and the outcome was unpre- increasing number of young Swedish women sufer- dictable. At that tme, medical artcles began report- ing from superfcial dyspareunia (painful intercourse) ing that psychological distress and sexual dysfuncton who were given a diagnosis of vulvar vestbulits syn- were common among vulvodynia patents. It became drome (VVS), pain surrounding the vaginal opening obvious to us during treatment that the conditon provoked by touch. The precise etology of the disor- was multfaceted and most patents would beneft der is stll undetermined. (VVS is currently known as from psychological and sexual counseling. (See SWEDISH PERSPECTIVE, page 2)

NVA’s History of Patent Advocacy By Phyllis Mate, M.A., NVA Cofounder and President

Dedicated patent advocates are essental to educatng the medical community about litle-known chronic pain conditons. It was the persistence of two women at NVA, with the guidance of Stanley Marinof, M.D., who were instrumental in convincing the Natonal Insttutes of Health (NIH) and the U.S. Congress that vulvodynia was a legitmate women's health disorder. Over 25 years, NVA has facilitated progress in the feld by promotng and funding research on vulvodynia, changing health care providers' attudes toward women with vulvodynia and empowering women to discuss their conditon with family members, friends and health care providers.

(See ADVOCACY, page 6)

SWEDISH PERSPECTIVE (from page 1)

Danderyd Hospital Vulvar Clinic which was refected in the reduced number of surger- ies. Nowadays, surgery is stll an opton for cases in I was an ob/gyn resident when I was recruited to which other treatments have failed. study the vestbular mucosa in women with VVS. When I began my research, I had not yet seen any As the number of referrals increased, the vulvar clinic patents with vulvodynia, but over tme I became very expanded. Most patents were from the Stockholm involved in clinical work. The personal histories of area, but we also became a natonal referral center. VVS patents varied and as I met more of these wom- We recruited several younger gynecologists who be- en, the complexity of the conditon became apparent. came Ph.D. students and researched vulvodynia or A large number of patents had comorbidites of anxi- the vaginal immune system, specifcally recurrent vul- ety and depression, as well as other chronic pain con- vovaginal Candida infectons (RVVC). There is a strong ditons. By the late 1990s, several studies had found associaton between PVD and RVVC, which is some- associatons between vulvodynia and other chronic tmes a trigger for the conditon. It is important to pain conditons, such as fbromyalgia and intersttal treat RVVC appropriately to reduce the risk of devel- cystts. In 2000 we started our vulvar clinic, which oping dyspareunia. Eventually we employed a physio- included two counselors and two midwives. We therapist in the clinic to work alongside the midwives. adopted a multdisciplinary treatment model, which We had learned that vulvodynia patents were tense in combined medical treatment, physical therapy and the hip muscles, as well as the pelvic foor muscles. psychosexual counseling. All patents with superfcial (See SWEDISH PERSPECTIVE, page 3)

dyspareunia were frst diagnosed by Dr. Rylander or myself and then met with a midwife trained in pelvic NVA News foor muscle therapy. Patents were given exercises for desensitzing the vestbular mucosa and rehabili- Natonal Vulvodynia Associaton tatng pelvic foor muscles. Concurrently, the patents P.O. Box 4491, Silver Spring, MD 20914-4491 Tel: (301) 299-0775 Fax: (301) 299-3999 started seeing counselors skilled in cognitve behavior www.nva.org therapy, who assigned cognitve tasks to do between sessions (1). Sometmes medical pain treatments, Editor: Phyllis Mate such as amitriptyline or topical lidocaine, were used Layout: Lisa Goldstein to diminish mucosal pain sensitvity. The Natonal Vulvodynia Associaton is a nonproft Our team had frequent meetngs to discuss treatment organization that strives to improve women's issues and outcomes. These meetngs turned out to quality of life through educaton, research funding, support and advocacy. be one of the most important parts of my educaton in treatng vulvodynia. As gynecologists, we had lim- The NVA is not a medical authority and strongly ited tme with patents and only knew part of their recommends that you consult your own health stories, whereas midwives and counselors met with care provider regarding any course of treatment patents frequently and followed their progress for or medicaton. 9-12 months. These meetngs served as an opportu- nity to learn more and assess and develop our treat- NVA News, Copyright 2018 by the Natonal ment model. The counselor addressed stress factors Vulvodynia Associaton, Inc. All Rights Reserved. in a patent’s life, sexuality, relatonships and other Permission for republicaton of any artcle herein important issues, such as concepton, pregnancy and may be obtained by contactng the NVA Executve childbirth. This multdisciplinary treatment model was Director at (301) 299-0775. efectve in helping patents’ symptoms improve,

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SWEDISH PERSPECTIVE (from page 2)

Several patents used a mouthguard to avoid clenching fricton. Our frst study showed that there was an in- their teeth, evidence of overall muscle tension that creased number of sensory nerve fbers in the vestbu- needed to be addressed. lar mucosa of women with VVS compared to healthy women (2). We also found that these nerve fbers Dr. Rylander and I collaborated with the dermatolog- were sensitzed, i.e., the lightest stmulaton of the ves- ical department at Danderyd Hospital, because many tbule resulted in a pain sensaton (3). These fndings patents who visited the clinic had severe vulvar skin explained why patents experienced severe pain with diseases, such as lichen sclerosus. Pain specialists touch, tampon inserton and sexual intercourse. The were also consulted, because some patents with un- cause of the sensitzaton is not completely under- provoked vulvodynia required additonal treatment. stood, but several triggers are possible. Most likely, Other patents had vulvar dysplasia, a pre-cancerous the etology is multfactorial and varies among pa- conditon ofen located in sensitve areas of the vulvar tents. Following results of these early studies, the In- skin or mucosa. Ideally, the lesions are removed ternatonal Society for the Study of Vulvovaginal Dis- successfully with one surgical procedure, because ease (ISSVD) changed the terminology, because VVS additonal surgeries are likely to lead to pain with was now considered a pain syndrome rather than a intercourse. Recently, patents experiencing dyspa- classic infammatory conditon. The term ‘Provoked reunia afer vaginal childbirth have been referred to Vestbulodynia’ is a more accurate descripton of the our clinic. In some cases, pain that occurs afer peri- conditon and consistent with the terminology used for neal tears requires surgical correcton. other pain disorders (4). However, recent research has provided some support for the theory that impairment The head of our ob/gyn department and the hospital in the local infammatory response is involved, result- director have always been very supportve of our clinic. ing in neurogenic (nerve-related) infammaton of the It is considered one of the hospital’s most important mucosa. In other studies, we investgated hormonal services and serves as a model for other insttutons. impact on the vestbular mucosa, showing that oral Our multdisciplinary approach makes it possible for contraceptves induced changes in the tssue that the patent to be completely taken care of in one loca- might be harmful to some women (5). Nevertheless, ton by a group of professionals who communicate we usually prescribe hormonal contraceptves when with each other. Advantages of this approach are that needed, and carefully observe side-efects, such as it is easy to access informaton about a patent’s pro- dryness and discomfort. gress and we constantly learn from each other. Clearly, not all clinicians have this opportunity, but stll do very While pursuing this line of research, we discovered important work with vestbulodynia patents. Much that patents with PVD had lower pain thresholds on can be done in smaller clinical setngs in which clini- other parts of the body as well. This fnding was re- cians have an interest in treatng vulvar pain and are ported by other research groups and we wondered willing to learn about it. whether PVD was just one component of a genetcally- based generalized pain syndrome. With fnancial sup- Research port from NVA, we planned a genetc study with PVD patents. Our aim was to investgate whether there The aim of our frst research study was to investgate was a genetc predispositon for developing PVD by peripheral pain mechanisms of the vestbular mucosa. analyzing polymorphisms in genes involved in pain Frequently, doctors told patents that the pain was modulaton. Our main fndings were that specifc “all in your head.” Professor Rylander was convinced genetc polymorphisms in the opioid and serotonin that part of the problem was in the vestbular mucosa, sensitve tssue with poor resistance to infecton and (See SWEDISH PERSPECTIVE, page 4)

NVA News/Winter 2018 Page 3

SWEDISH PERSPECTIVE (from page 3) systems afect endogenous (internally caused) pain course for gynecology and dermato-venereology spe- modulaton and contribute to the risk of developing cialists. In 2016, the Natonal Swedish Vulvar Society PVD. accepted the responsibility of educatng all ob/gyn residents in basic vulvovaginal diseases. In additon As described above, many women with PVD have dys- to these courses, we teach midwives and medical stu- functon in the pelvic foor muscles (PFMs) that needs dents on a regular basis, and for the frst tme this se- to be rehabilitated. Diferent physical therapy methods mester, vulvodynia and pelvic pain will be taught in a can be used to increase a woman’s ability to contract postgraduate course for physical therapists. and relax these muscles. However, a positve treat- ment outcome is not always achieved with physical Internatonal collaboraton is also very important. The therapy. In the past, we had performed one random- congresses organized by the ISSVD and the European ized clinical trial using EMG biofeedback as a tool for College for the Study of Vulvar Disease provide oppor- PFM rehabilitaton. The results showed a signifcant tunites to present studies and engage in discussion reducton in vestbular pain, as well as impaired sexual with colleagues. Hopefully, this internatonal collabora- functoning and psychosocial adjustment (6). Currently, ton will expand in the future, especially to facilitate we are conductng a double-blind randomized control- clinical trials that require a large number of patents. led trial (RCT) of botulinum toxin A (BTX) for women with PVD and PFM dysfuncton. Again, we applied for Future Challenges and received fnancial support from the NVA. The of- label use of BTX for PVD patents is common, but there The availability of vulvovaginal experts and sexual is only one previously published RCT showing that 20 health specialists difers between countries and various units of BTX injected into the bulbocavernosus muscles regions within countries. In Sweden, most vulvodynia was no more efectve in relieving pain than a placebo. patents are taken care of in the Stockholm-Uppsala In our study, we are injectng 50 units into the same region, but there are other areas that do not have doc- muscles and using the level of dyspareunia as the pri- tors with this expertse. The Natonal Vulvar Society mary outcome. For secondary outcomes, we are evalu- ofen discusses this problem and the Swedish Natonal atng pelvic foor tension using a new vaginal manometer, Board of Health recently acknowledged the disparity. and assessing psychological and sexual functoning, as They gathered and analyzed relevant data, confrming well as quality of life. All patents have been recruited the uneven distributon of vulvar clinics in Sweden. The and the results will be announced by fall 2019. Earlier investgaton found that the number of women with this year, we received major funding to determine PVD had doubled from 2006 to 2016. It was also shown whether early pain exposure is a contributng factor that, in certain areas of Sweden, very few cases were to chronic pain, including vulvodynia, and psychological diagnosed and the number of women seeking consul- impairment later in life. taton was low. Clearly, PVD is under-reported and doc- tors are confused about the ICD-10 diagnoses that ap- Educaton and Collaboraton ply, which is one reason why the incidence is lower than expected. We have no reason to think that our In additon to clinical work, the vulvar clinic has gradu- situaton is any diferent from that of other European ally taken on more responsibility for educatng our col- or North American countries, so we have to contnue leagues about vulvovaginal diseases and vulvodynia. to support and encourage colleagues in all regions and Unfortunately, there is stll a lack of basic knowledge countries to establish vulvar clinics. about vulvodynia in Sweden and other countries, but my impression is that interest is growing. More than 10 In my regular clinical work, I see vulvar patents three years ago, my colleagues and I organized a natonal days per week. The rest of the tme I teach medical (See SWEDISH PERSPECTIVE, page 12)

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In Her Own Words

By Leah S.

I was living a typical 24-year- Botox last even longer. I do realize, however, that Bo- old life in City when tox injectons are not the answer for everyone. The out of nowhere my vulva key takeaway from my experience is that there are started burning. I was so treatments for vulvodynia that are now more avail- scared and confused by what able, because many gynecologists, physical therapists was happening to my body. I and other providers fnally recognize that it is a com- started going to countless mon conditon. I encourage everyone with vulvar or doctors, some of whom were pelvic pain to do research and be persistent untl they gynecologists. Many said it was all in my head, nothing fnd a treatment that works. You can reach out to NVA was wrong, or that they just didn’t have a soluton. to connect with a support contact in your area, who I was given medicaton for yeast infectons, steroid may have valuable informaton on local resources. creams and anthistamines, but nothing provided re- Whether you are in a relatonship, datng someone or lief. Finally, I went to a vulvar pain support group. Al- single, do not be embarrassed that you have vulvody- though it was disheartening to hear some women’s nia. It can help a lot to discuss your pain with other stories, it was ultmately a great decision, because I women and to be optmistc that you will fnd relief. got the names of two vulvar pain specialists in New Vulvodynia is more common than many people realize York City. It really helped me to hear that there were and you’ll be surprised to learn that women you know medical practtoners who understood vulvar pain and have had a similar experience. ofered treatments. By Pame Clynes I went to one of the specialists and was diagnosed with vulvodynia and hypertonic (tght) pelvic foor muscles. My doctor explained that when the pelvic foor muscles get very tght, they can trigger a burning If you see me smiling, it’s sensaton. She prescribed an antdepressant and ant- because I’ve made peace convulsant for pain and gave me valium suppositories with my pain. I feel it, I to help relax the pelvic foor muscles. recognize it and I let it go.

I also started seeing a women’s health physical thera- pist specializing in pelvic pain. She gave me exercises to stretch my pelvic foor muscles and told me to order The frst tme I heard the word vulvodynia was in an dilators to stretch the muscles and help them relax. I episode of Sex and the City. If you watched the show, stll had a moderate amount of burning pain, but I did you may remember when Charlote mentons it at not give up. My doctor injected some pelvic foor mus- brunch, saying that “her vagina is depressed.” I hon- cles with Botox to help relax them and that was a god- estly laughed with her friends, not knowing that years send! Botox essentally ‘paralyzed’ my tght muscles, later, I was going to be diagnosed with vulvodynia. Un- which were then able to relax. My pain went from be- fortunately, the show handled it unrealistcally, sug- ing a 5 (out of 10) to a 1. I could have sex without pain gestng that it’s nothing to be worried about. I hated again and didn’t have the constant itching and burn- when Charlote said it doesn’t hurt! Afer my symp- ing. I fnally felt normal! The best part about Botox is toms started and I watched the episode again, I that it lasts three to six months. Additonally, I use the dilators to further stretch the muscles, which helps the (See IN HER OWN WORDS, page 10)

NVA News/Winter 2018 Page 5

ADVOCACY (from page 1)

Raising Awareness courageous woman can make a diference. Many women told us that Callista’s video encouraged them In the early years, NVA contacted dozens of health to tell family and friends that they sufered from vulvo- writers and magazine editors, trying to convince them dynia. In Dr. Harlow's landmark prevalence study, 40 to write artcles about vulvodynia and its impact on a percent of women with vulvodynia did not seek profes- woman's quality of life. Afer having success with sional help for their pain (1). Given NVA’s eforts to ‘women's magazines,’ we faced the challenge of cult- raise awareness and the increasing number of female vatng the interest of newspaper editors and television gynecologists, we are hopeful that more women with producers. Fortunately, there have been major break- vulvodynia will feel comfortable discussing their symp- throughs in the past 18 years. Among our most memo- toms with their doctor. rable successes was the publicaton of health columnist Jane Brody’s in-depth New York Times artcle on vulvo- NIH Vulvodynia Conferences dynia. Many health editors followed suit and artcles about vulvodynia appeared in newspapers across the From the beginning, NVA realized the importance of U.S. and on dozens of health websites. Creatng even developing relatonships with key ofcials at the Na- more excitement, NVA was contacted by a producer tonal Insttute of Child Health and Human Develop- for Oprah and asked to select four vulvodynia patents ment (NICHD), which is responsible for vulvodynia to appear on her show. Afer the segment aired, the research. Our persistence resulted in NICHD holding producer posted a link to NVA on the show's website three vulvodynia conferences in 10 years, atended by and introduced our executve director to Dr. Mehmet clinicians and researchers dedicated to treatng and/or Oz, who invited her to appear on the popular Dr. Oz researching the cause of vulvodynia. At these two-day show. Following each of these appearances, NVA's conferences, vulvodynia experts gave presentatons on phone did not stop ringing for weeks. diferent aspects of the disorder. Afer the last presen- taton, the entre group discussed the types of studies Three years ago, even though our website already re- needed to advance knowledge in the feld and sub- ceived about 4,000 hits monthly, NVA hired a public mited their recommendatons to NICHD. relatons consultant to develop a comprehensive vul- vodynia publicity campaign. First, she modifed our In 2011, instead of having a similar conference, NICHD website to make it more atractve and user-friendly, hosted a meetng of 75 researchers from various felds and most importantly, enhanced search engine optmi- of study to develop a vulvodynia research agenda. By zaton to reach a broader audience. Next, she designed this point in tme, vulvodynia was conceptualized as a a vulvodynia awareness campaign ttled Indivisible, the chronic pain disorder rather than a gynecological disor- focus of which was empowering women with vulvody- der. Bringing together these researchers to discuss the nia to break their silence. In October 2016, NVA issued pathophysiology of chronic pain created the founda- the Indivisible press release, launched a Facebook page ton for interdisciplinary collaboratons and innovatve and posted a powerful video on its YouTube page. The approaches to the study of vulvodynia. Two weeks video featured Callista Wilson, a 27-year-old woman afer the meetng, the NICHD and Ofce of Research who found the courage to appear on camera and de- on Women's Health co-sponsored three new funding scribe the vulvar pain she experienced and how it opportunites to promote vulvodynia research. afected her life. Her pelvic foor physical therapist, NVA Board Member Pamela Morrison Wiles, DPT, also NVA-Funded Research and Clinics partcipated, presentng essental informaton about vulvodynia. Over the past two years, thousands of To date, NVA has awarded over $1.4 million in re- women have viewed the video, illustratng how one search grants for 52 vulvodynia studies and funded the (See ADVOCACY, page 7)

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ADVOCACY (from page 6) establishment of seven vulvar pain clinics in the U.S. quality of life. Afer six months of treatment, the as- and two other countries. (To view summaries of these sessment was repeated. Of 344 women diagnosed studies, see htps://www.nva.org/research.) The pur- with vulvodynia, 282 received treatment. An astound- pose of our research grants is to enable researchers ing 78 diferent treatments were identfed and cate- to collect and analyze pilot data to improve their gorized by type (e.g., oral, topical) and number. Ac- chances of securing major research funding. Most of cording to the analysis, the most commonly used our grant recipients have published their studies in treatments for vulvodynia are topicals, oral medica- peer-reviewed journals and many have subsequently tons and pelvic foor physical therapy. Another fnd- obtained multmillion dollar grants from NIH or the ing was that 73 percent of patents used a combina- Canadian Insttutes of Health Research. Currently, ton of treatments. There was no associaton between NVA's priority is funding research on potental causes type of treatment and patent characteristcs. Afer six of vulvodynia, because existng medical treatments months of treatment, women reported less pain dur- for chronic pain are ofen inefectve in vulvodynia ing the vulvar examinaton and sexual intercourse, patents. Randomized controlled trials of two widely less catastrophizing and anxiety, and improved quality used oral medicatons for vulvodynia patents found of life. However, all domains of the Female Sexual them to be no more efectve than placebo (2, 3). It is Functon Index indicated worsening of sexual func- our hope that studies investgatng genetc abnormali- ton. Unfortunately, clinicians prescribed so many tes and pathophysiological mechanisms will lead to diferent treatments and combinatons of treatments, the development of more efectve vulvodynia treat- investgators could not evaluate the efcacy of indi- ments. We are also very interested in awarding grants vidual treatments. to study Generalized Vulvodynia, because few studies include women with this subtype. NVA Successes on Capitol Hill

In 2009, NVA funded an ambitous undertaking, a fve- In the late 1990s, NVA was very fortunate to fnd an year mult-site Natonal Vulvodynia Registry coordi- ally in Senator Tom Harkin (D-Iowa), women's health nated by Georgine Lamvu, M.D., at Orlando Hospital advocate and former chairman of the Senate’s Health, in . This project collected extensive data on 344 Educaton and Labor Appropriatons subcommitee. vulvodynia patents from eight clinical sites across the His chief of staf, Peter Reinecke, helped us convince U.S. The purpose of the Registry was to identfy vulvo- other Senate health stafers that vulvodynia deserved dynia subgroups, describe treatment paterns and federal research funding. He arranged for NVA's exec- determine whether there was an associaton between utve director to speak at the same Senate briefng as type of treatment and patent-reported outcomes. Christopher Reeves, knowing that a celebrity The study identfed two distnct patent subgroups: speaker would guarantee excellent atendance. Our women with high sensitvity to pain and high emo- goal was to have strong language on vulvodynia add- tonal distress versus women with low sensitvity to ed to the Senate's 1998 NIH Appropriatons report, pain and low emotonal distress. High-level emotonal directng NICHD to fund research on its causes and distress was the only variable identfed that correlat- treatments. NVA's executve director collaborated ed with pain severity, suggestng that this may be a with Peter on writng the language and then he con- phenotype that modulates response to treatment. vinced Senate stafers to include it in the report. The wording was revised in subsequent years to acknow- The study’s inital assessment measured pain in the ledge NIH’s progress in promotng vulvodynia re- vulvar vestbule and vaginal muscles, and adminis- search. What follows is a sample of vulvodynia tered questonnaires on pain, psychological distress, (See ADVOCACY, page 8)

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ADVOCACY (from page 7) language included in the U.S. Senate's 2008 NIH NVA Promotes Vulvodynia Research Funding Appropriatons report: Ten years ago, NVA joined forces with patent advo- In the past decade, the NIH has supported three cacy organizatons representng women with other important research conferences on vulvodynia, as chronic pain disorders occurring exclusively or mainly well as the frst prevalence study and clinical trial in women: endometriosis, irritable bowel syndrome, on the disorder. These eforts have both clearly intersttal cystts, fbromyalgia and temporomandibu- demonstrated the need for substantal additonal lar joint disorders (TMJD). Prior to collaboratng, NVA research and served to heighten the research had surveyed vulvodynia patents and found that community’s level of interest in studying vulvo- many reported having one or more of the above pain dynia. The Commitee calls upon the Director (of conditons. The NIH was allocatng a small amount of NIH) to build upon these inital successes by coor- money for research on vulvodynia and these other dinatng through the Ofce of Research on Wom- pain disorders, so our goal was to persuade them to en’s Health (ORWH) an expanded, collaboratve increase funding and promote studies on characteris- research efort into the causes of, and treatments tcs or mechanisms the conditons have in common. for, vulvodynia. The Commitee also commends NIH had recently established a Pain Consortum to ORWH for working with the NVA and women’s promote a comprehensive and forward-thinking pain health ofces in other governmental agencies to research agenda and NVA met with this group several plan an educatonal outreach campaign on vulvo- tmes. One of the NIH Pain Consortum’s recommen- dynia, as previously requested by the Commitee. datons in the 2010 Afordable Care Act directed the Finally, the Commitee encourages the Director Department of Health and Human Services (DHHS) to to work with the Center for Scientfc Review to evaluate chronic pain as a public health concern. ensure that experts in vulvodynia, and related DHHS engaged the Insttutes of Medicine (IOM), a chronic pain and female reproductve system non-proft organizaton that provides evidence-based conditons, are adequately represented on peer- research and recommendatons on public health, to review panels. conduct the evaluaton.

Following this success on the Senate side, NVA return- In 2011, the IOM conducted a comprehensive study to ed to Capitol Hill to meet with Rep. Tammy Baldwin assess the status of pain research, patent care and (D-Wisconsin), a commited women's health advocate. pain educaton in the U.S., and their 364-page report, With her encouragement, NVA organized an annual Relieving Pain in America, was presented at the frst- grassroots campaign, asking members to visit Repre- ever U.S. Senate hearing on chronic pain. NVA's execu- sentatves' ofces on the same day in April. We gave tve director was invited to speak on behalf of chronic volunteers a fact sheet and talking points, and over 60 pain patents and gave compelling testmony, describ- women few to Washington, DC, the frst year. Others ing both the physical and emotonal consequences of met with their Representatves locally during Congres- living with pain. The IOM report confrmed that chron- sional recess. This natonwide lobbying efort con- ic pain disproportonately afects women. Further- vinced members of the House of Representatves’ more, the report revealed a gender disparity in pain Health, Educaton and Labor Subcommitee to add care, with women more likely to experience delay in language on vulvodynia to their NIH Appropriatons diagnosis, inefectve treatment, stgma and/or not report, ensuring that the mandate to fund vulvodynia having their symptoms taken seriously by doctors. To research would be included in the fnal NIH budget address this disturbing situaton, the report recom- and report signed into law by the President. mended an increase in research funding for women's (See ADVOCACY, page 9)

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ADVOCACY (from page 8) pain conditons and the development of programs women from Croata and one from South Africa fnd a that teach health care providers how to treat chronic local doctor. Recently, we were contacted by a woman pain patents. Over the next two years, NIH increased with vulvodynia living in Mexico who was able to trav- spending on vulvodynia, endometriosis, intersttal el to the for treatment, but is com- cystts, fbromyalgia, irritable bowel syndrome and mited to having vulvodynia recognized by gynecol- TMJD. ogists in her country. She asked us for advice and would like to afliate with NVA to add legitmacy to NVA’s CME/CE-Accredited Vulvodynia Tutorial her mission. Working with her has been a positve experience and we plan to do more internatonal out- When NVA was founded, there were perhaps 25 doc- reach by contactng the Internatonal Federaton of tors in the U.S. with the expertse to diagnose and Gynecologists and Obstetricians, which is composed of treat vulvodynia. We tackled this problem by asking gynecology associatons in 130 countries. vulvodynia experts to create a teaching CD for health care professionals, which we distributed to chairper- NVA's Dedicated Personnel sons and residency directors of ob/gyn departments, as well as to the American College of Obstetricians Although we have a very small staf, NVA has man- and Gynecologists and Planned Parenthood clinics. aged to accomplish a great deal. As a result of declin- The self-guided tutorial covered prevalence, diferen- ing membership, both our executve director and tal diagnosis and common treatments. In 2008, we administratve assistant now work half-tme. I started launched the frst and only online vulvodynia tutorial volunteering as editor of NVA's newsleter 25 years and raised funds to host it on Medscape, the most ago and also serve as President of the Board. I'd like to widely used online medical resource in the world. express my heartelt appreciaton to Lisa Goldstein, Within six months, it became the third most popular Tamara Matos and Michelle Living for their dedicaton CME/CE-accredited program on Medscape! Over the to helping women with vulvodynia and also thank the past decade, more than 50,000 health care providers hundreds of support leaders (past and present) who have viewed the tutorial, 22,000 of whom took the have been an invaluable resource for women needing post-test and received a CME/CE certfcate. Most of someone to show them compassion. the viewers have been gynecologists, dermatologists, pain specialists, nurse practtoners, family doctors References and nurses. 1. Harlow BL, Stewart EG. A populaton-based assess- Internatonal Outreach ment of chronic unexplained vulvar pain. J Am Med Womens Assoc 2003;58:82–8. As a result of NVA’s eforts, today the majority of gyne- cologists and women’s health nurse practtoners in 2. Foster DC, Kotok MB, Huang LS, Wats A, Oakes D, the U.S. can diagnose and treat vulvodynia. Unfortu- Howard FM, et al. Oral desipramine and topical lido- nately, there are stll many countries with comprehen- caine for vulvodynia: a randomized controlled trial. sive gynecologic services in which health care provid- Obstet Gynecol 2010;116:583-93. ers are not knowledgeable about vulvodynia. Women seeking treatment in foreign countries contact us, and 3. Brown CS, Bachmann GA, Wan J, Foster DC, Gaba- in some cases, we have been able to refer them to a pentn (GABA) Study Group. Gabapentn for the treat- doctor in their country or within a reasonable dis- ment of vulvodynia: a randomized controlled trial. tance. This past month, we were able to help two Obstet Gynecol 2018;131:1000-7.

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IN HER OWN WORDS (from page 5) thought, “How dare you say you’re not in pain, be- I packed my bags and went to Miami, where my dad cause you have no idea.” was living at the tme. I made an appointment with Jay Trabin, M.D., who has a private practce in West Palm I was living in New York, studying for an MFA at Par- Beach, Florida. He is very knowledgeable about vulvo- sons School of Design, when my symptoms started. It dynia and a super-nice person, so I immediately felt was the best tme of my life. I was living in one of the comfortable. Dr. Trabin examined me, and within most wonderful cites in the world and going to fash- minutes, I got my diagnosis of Generalized Vulvodynia ion school, meetng people from diferent cultures, and Pelvic Floor Dysfuncton. I felt so relieved. I began eatng amazing food and enjoying incredible art. I was a combinaton of treatments with a pain management very happy untl, out of nowhere, my vulvar pain sent specialist. My treatments included pudendal nerve my happiness down the drain. At frst I thought I had a blocks, Botox, antdepressants, topical creams, and normal yeast infecton, which was confrmed by the most importantly, I started seeing a therapist. school’s physician. That was the beginning of non-stop antbiotcs and a long struggle to regain my life. I know many of us are stll struggling to fnd new ways to cope with vulvar pain, praying for new treatments I had to go back to Mexico, because the pain was con- or a cure. Even though I’m getng help, I stll have bad stant and the medicatons didn’t work. People had days and fnd sex painful sometmes. I’ve managed to recommended other gynecologists, but my health make peace with the pain, even though it hasn’t com- insurance had expired. Being a foreigner in the U.S., pletely gone away. I’m not ashamed anymore and with no health insurance, was like being invisible. I want to help other women in my country who are stll was alone and feeling miserable, not knowing what sufering in silence. I have already started the frst was happening to my body and missing my family. platorm in Mexico dedicated to helping women with Suddenly, I realized that my New York days were over. vulvodynia, @peacewithpain. With some help from NVA, I am optmistc we will fnally break the silence. I arrived home and went directly to the hospital. At this point, my gynecologist knew something was wrong, but could not diagnose it. All my test results, Employer-Matched Donatons e.g., bacterial and other infectons, came back nega- Many employers ofer a matching gif program tve. I felt like I was going crazy, and that maybe it was that will double—or even triple—charitable all in my head. contributons made by their employees, retr-

ees, and spouses/partners. Top matching gif Next, I met with other gynecologists, urologists, and companies include ExxonMobil, General Elec- infectous disease specialists. I even went to see a tric, Microsof, Apple, Home Depot, Starbucks, famous ‘chaman’ in Mexico, known for his herbal teas that help infertle women get pregnant. I tried other State Farm, and Verizon. For a list of additonal alternatve medicines, but I was completely over- top companies, go to www.nva.org/donate. If whelmed. Stll, no diagnosis. During this period, my your employer isn’t on the list, please contact boyfriend broke up with me and my work was sufer- your company’s human resources department ing. So, like most people, I googled. Afer hours surfng to see if you are eligible to have your gif the internet, I found the term Vulvodynia, and then I matched. Thank you for taking this simple step found nva.org. It was a life-saver for me, because I to multply your gif to the NVA! was not alone anymore.

Page 10 NVA News/Winter 2018

Use of Platelet-Rich Plasma for Lichen Sclerosus?

Adapted from: Behnia-Willison F, Reza Pour N, et al. Use of platelet-rich plasma for vulvovaginal autoimmune conditons like lichen sclerosus. Plast Reconstr Surg Glob Open 2016;11:e1124.

Background unresponsive to topical steroid treatment. Afer obtaining informed consent, patents’ own blood was Lichen sclerosus (LS) is an infammatory dermatosis centrifuged on site and injected under local anesthesia with autoimmune pathogenesis. Although relatvely to the external genitalia. common, its true incidence is unknown and likely un- derestmated. LS is usually anogenital, but in 10 per- Results cent of patents, it can present as extragenital lesions. Contnuous administraton of topical cortcosteroids is Almost all patents showed clinical improvement in the mainstay of medical treatment. Other treatments the size of their lesions, and in eight cases, lesions dis- are available, but are only occasionally prescribed in appeared afer treatment with PRP. All symptoms dis- additon to or instead of topical steroids. There is evi- appeared in 15 of the 28 patents afer treatment, dence that injecton of platelet-rich plasma (PRP) into with no need for further steroid therapy in 23 patents. afected areas regenerates normal skin. In this study, Thirteen women experienced partal symptom relief. we evaluated the safety, symptom resoluton, and ob- jectve improvement in patents with genital LS afer Conclusions treatment with PRP. Based on our limited fndings, we hypothesize that Methods PRP presents a potental alternatve to topical steroids for treatment of vulvovaginal autoimmune conditons Over a two-year period at FBW Gynaecology Plus, we such as LS. A larger pilot and/or randomized controlled had a total of 28 patents with confrmed LS who were trial study is required to further evaluate this fnding.

Dear NVA member,

As you may know, some small non-profts have ceased operatons or scaled back their services. The NVA Board chose to contnue serving members by changing our two full-tme staf positons to half-tme posi- tons. As the only full-tme volunteer, my workload has increased considerably. To complete my work and supervise staf, I was only able to produce two newsleters in 2018 and that change will contnue in the future. If there are any important clinical or research advances between newsleters, I will certainly send you an artcle or leter via email. Please email any updates to your email address to [email protected].

We remain commited to sharing the latest informaton about vulvodynia, and to maintaining our support services and health care provider referral list. Thankfully, a generous donor has enabled us to update our CME-accredited vulvodynia tutorial, which contnues to educate thousands of health care providers each year.

I wish you a healthful and happy 2019.

NVA News/Winter 2018 Page 11

Partcipants Needed for a Study Designed to Evaluate the Efcacy and Safety of Dysport (Botox A) in Vulvodynia Patents

If you are a woman 18 to 45 years of age who has had vulvodynia for at least six months, but for no more than 15 years, and never had a vaginal delivery (including atempted vaginal delivery), you may be eligible to partcipate in this study. Partcipants must have provoked pain at the vestbule with a Q-tp test, but those with deep pain during intercourse are not eligible. Partcipants cannot have genitourinary conditons or previous surgery that, according to the investgator's judgement, may impact the study outcome. This includes, but is not limited to, hysterectomy, vestbulectomy, urologic surgery, perianal surgery or genital trauma.

This study will be conducted in the following locatons: San Diego, ; Washington, DC; Kansas City, Missouri; Omaha, Nebraska; New Brunswick, New Jersey; Bryn Mawr, ; Nashville, Tennessee; and Seatle, Washington. If you are interested in partcipatng, please email [email protected]. For more informaton on the study, please go to htps://clinicaltrials.gov/ct2/show/NCT03598777.

SWEDISH PERSPECTIVE (from page 4) students and conduct vulvovaginal research. The stu- References dents are ofen with me during the clinical work and I think it is also important to discuss preventve measures 1. Backman H, Widenbrant M, et al. Combined physi- with them. Afer many years of experience, I am con- cal and psychosexual therapy for provoked ves- vinced that the best treatment outcome occurs when tbulodynia—an evaluaton of a multdisciplinary we are able to help young women as promptly as pos- treatment model. J Sex Res 2008;45:378-85. sible afer they experience symptoms of dyspareunia. 2. Bohm-Starke N, Hilliges M, et al. Increased intraep- The issue is how to reach them. In Sweden, we have ithelial innervaton in women with vulvar vestbulits adolescent centers where young people can seek help syndrome. Gynecol Obstet Invest 1998;46:256-60. with contracepton, infectons and/or sexual problems. 3. Bohm-Starke N, Hilliges M, et al. Psychophysical Many of these centers have midwives and counselors evidence of nociceptor sensitzaton in vulvar ves- working with dyspareunia patents and there is a con- tbulits syndrome. Pain 2001;94:177-83. stant need to educate them. One Swedish study 4. Bornstein J, Goldstein AT, et al. 2015 ISSVD, showed that 65 percent of young women had pain ISSWSH, and IPPS consensus terminology and clas- during their frst intercourse and that half of them con- sifcaton of persistent vulvar pain and vulvodynia. tnued to have pain to varying degrees in the following J Sex Med 2016;4:607-12. months (7). Not all of them will develop PVD, but the 5. Johannesson U, Blomgren B, et al. The vulval vestb- fndings indicate it is very important to educate ado- ular mucosa-morphological effect of oral contraceptives lescents about sexual health and tell them that sex and menstrual cycle. Br J Dermatol 2007;3:487-93. should not hurt. We also have to organize our health 6. Danielsson I, Torstensson T, et al. EMG biofeedback care system to be able to meet the demand for this versus topical lidocaine gel: a randomized study for type of consultaton. One avenue is to fgure out how the treatment of women with vulvar vestbulits. we can beter use social media to disseminate infor- Acta Obstet Gynecol Scand 2006;85:1360-7. maton on PVD. In additon to discussing preventve 7. Elmerstg E, Wijma B, Swahnberg K.Young Swedish measures, PVD symptoms, and sexual implicatons, it is women's experience of pain and discomfort during important to provide informaton on how to fnd an sexual intercourse. Acta Obstet Gynecol Scand experienced clinician. 2009;1:98-103.

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