Aspects of Vulvodynia from a Swedish Perspective NVA's History Of

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 surgeries. 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 been, 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 opportunity 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, Page 2 NVA News/Winter 2018 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

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