Women's Sexual Function and Dysfunction. Irwin Goldstein MD

History of the International Society for the Study of Women’s Sexual Health

(ISSWSH)

Sue W Goldstein

Psychologic care for women with sexual dysfunction has been available from mental health practitioners for many years. The medical community, on the other hand, has generally ignored women’s sexual health. The advent of sildenafil as a safe and effective, government-approved therapy for men with erectile dysfunction in the late 1990s triggered and empowered women distressed by their own sexual dysfunctions to demand safe and effective therapies for themselves, especially from sexual medicine, biologically-focused health-care professionals. Sexual dysfunctions are well recognized to be byproducts of mind, body, and relationship issues. It is critical for maximal clinical success in sexual medicine to offer both psychologically and medically oriented interventions. When sildenafil was released to the public, there were essentially no groups of health-care professionals that equally concentrated on both psychologically and biologically based investigations in women’s sexual health. The demand for such multidisciplinary resources is central to the recent development of the International Society for the Study of Women’s Sexual Health (ISSWSH).

The purpose of this chapter is to trace the inception and early years of ISSWSH, believed to be the first organization of its kind. ISSWSH is devoted exclusively to women’s sexual health, and membership is uniquely multidisciplinary, more or less equally divided into psychologically and biologically motivated health-care professionals. The membership of organizations such as the American Association of Sex Educators, Counselors, and Therapists (AASECT) is primarily the mental health community, and the International Society for Sexual Medicine (ISSM) was originally designed as an organization for urologists. In contradistinction, ISSWSH was meant from the outset to be multidisciplinary, to engage clinicians and researchers encompassing basic science and clinical research in psychologic and biologic aspects of women’s sexual health. This chapter will also highlight some of the pioneers in this field, who had the passion and commitment and foresight to work together for a common cause.

The organization’s original name was the Female Sexual Function Forum (FSFF). ISSWSH was officially born in Boston on 28 October 2001 after the membership of the FSFF approved the society’s name change and initials and agreed upon the first ISSWSH board of directors. Sandra Leiblum, of the USA, was the organization’s first president, under the original name FSFF. Her successor was Alessandra Graziottin, of Italy, who was, therefore, technically the first ISSWSH president.

The original assembly of experts that would be remembered as the antecedent to ISSWSH was held in the spring of 1997 in Hyannis, Cape Cod, Massachusetts, and chaired by Raymond Rosen, PhD, and Michael O’Leary, MD. This meeting was conceived for the purpose of discussing clinical research outcome data in sexual dysfunction in both men and women. Attendance was by invitation only and consisted of experts from Australia, Canada, Europe, and the USA (Fig. 1.2.1).

Figure 1.2.1. Ellen Laan presenting her data on women's sexual health at the first Cape Cod conference.

While the bulk of the data were available for men only, the excitement of the attendees grew from the innovative and thought-provoking discussions on women’s sexual health. This was one of the first international, multidisciplinary meetings to include speakers on endocrinology, gynecology, internal medicine, neurology, psychiatry, psychology, urology, etc., for scientific discussion of physiology, pathophysiology, diagnosis, and treatment outcome on an equal footing regarding both men’s and women’s sexual health.

The first multidisciplinary meeting dedicated exclusively to evidence-based outcome data in female sexual dysfunction (FSD) was held again by the same meeting organizers in the same location the following year in June 1998. The aim of this second meeting was to bring international, multifaceted experts together to discuss basic science and clinical management in various physiologic and psychologic aspects of FSD (Fig. 1.2.2). Several meeting highlights were memorable and noteworthy. In the middle of the meeting, the power failed, leaving the meeting room in complete darkness.

Figure 1.2.2. Discussion panel at the second Cape Cod conference.

A psychologist with her own sexual dysfunction discussed her positive anecdotal experiences with enhanced orgasmic function on sildenafil when the lights went out. The lively spirit and discussion persisted and ultimately when the light returned, she continued with her interesting story. The timing of the darkness with the discussion of woman’s selective phosphodiesterase type 5 treatment was ironic and resulted in smiles on many of the attendees’ faces. A second highlight was of more academic significance. Attending the meeting alongside the experts was Tom Bruckman, at that time director of the American Foundation for Urologic Disease (AFUD). Prior to the Saturday lunch break, there had been an energetic discussion on the lack of an up-to-date consensus on nomenclature and classification in the field of FSD, in particular, that engaged biologic aspects of sexual dysfunction, hindering contemporary usage of a common scientific language. During lunch, Tom Bruckman and others were optimistically discussing plans to organize an international consensus development conference on FSD to discuss definitions and classifications (Fig. 1.2.3). In the months following the second Cape Cod meeting, Bruckman and the American Foundation for Urologic Disease would sponsor a multiphase process, including an initial planning committee meeting with Irwin Goldstein and Ray Rosen as cochairs, in August 1998 in Amsterdam, and a consensus panel meeting involving use of the Rand methodology for consensus development. A total of 19 panelists from five countries with a wide background of disciplines convened outside Boston on 22 October 1998 (Fig. 1.2.4). A subsequent focus group discussion ensued in Boston on 5 December 1998, and the communications from the expert panel led to the publication of a paper on the subject in the Journal of Urology in 2000.1

Figure 1.2.3. Lunch at the second Cape Cod conference, including conference cochairs Michael O'Leary and Raymond Rosen talking with Jean Fourcroy and Julia Heiman.

Figure 1.2.4. Leonard Derogatis and Alessandra Graziottin in discussion at the International Consensus Development Conference on Female Sexual Dysfunction: definitions and classifications sponsored by AFUD.

As a result of the Cape Cod conference and the planning of a consensus panel meeting in the Boston area in October, the Boston University School of Medicine departments of Continuing Medical Education (CME) and Urology teamed to host the first of several annual CME courses on FSD entitled “New Perspectives in FSD”. The 2-day meeting was held immediately after the consensus panel meeting in October 1998 in a suburb of Boston, and was chaired by Irwin Goldstein, MD.1,2 Approximately 200 people from diverse disciplines and various regions of the world attended. The format of this meeting was limited to invited speakers, with no peer-reviewed abstract submission process. Whenever possible, however, basic science and clinical researchers who brought slides concerning individual investigations were given limited time at the podium. The enthusiasm for learning and sharing ideas and thoughts among the multidisciplinary attendees in women’s sexual health was infectious. Additional meeting highlights included a presentation of Gorm Wagner’s movie on the physiologic changes in women during sexual stimulation. A Halloween visit to a local castle, a traditional New England clambake, and dancing to a live band fostered the needed bonding of this multidisciplinary group.

The response to the initial “new perspectives” meeting in Boston was overwhelming. There was a definite interest in and a crucial need for in-depth knowledge of women’s sexual function and dysfunction, but there was a paucity of evidence-based information. Planning began immediately for a second new perspectives meeting. The meeting was lengthened to 2 И days to accommodate the expanded format that included podium and poster presentations based on submitted abstracts, in addition to 13 grand master lectures and invited speakers. Essay submissions were solicited for prizes offered in four basic areas: basic science in psychology, basic science in biology, clinical psychology, and clinical biology. This second new perspectives conference in October 1999 was held in a business hotel in downtown Boston.

Outside the doors of the hotel, a group of proponents of Leonore Tiefer’s “New View”3 picketed, hoping for some positive attention from the media and support from meeting registrants. Their demonstration was peaceful and reminded attendees that there was a need to be sensitive to the issue of “medicalizing” FSD. Approximately 450 people attended the new perspectives conference. In anticipation of interest in forming a society devoted to better understanding of the physiology, pathophysiology, and management of female sexual function and dysfunction, a business meeting was scheduled as part of the program. Attendees voted to develop a list-serve and name the FSFF. The only criterion for joining the list-serve was being a health-care professional with an interest in the field. The list-serve facilitated communication among people of various geographic locations, disciplines, and perspectives, and started participants thinking about the need for a more formal organization.

The following year’s conference in Boston was thus named the FSFF. In anticipation of the growing attendance, the meeting was moved into a larger conference hotel in Boston, Goldstein acting as chair once again. The format was similar to the year before, with more abstracts submitted and accepted. By the time on-site registrations were counted, there were nearly 700 people at the FSFF meeting. The hot topic was the use of androgens in women, with standing room only on Sunday morning to hear numerous questions and answers on the topic. A formal business meeting with elections took place, and the seeds of ISSWSH were sown. The passion, hard work, and dedication of a few had brought this original continuing medical education meeting to the annual meeting of an international organization. This last Boston University-sponsored meeting would set the tone for future ISSWSH meetings, with state-of-the-art lectures, controversial symposia, and abstracts judged on scientific merit.

Figure 1.2.5. Colleagues from Korea and France preparing for their presentations at the 2000 meeting of the Female Sexual Function Forum.

Sandra Leiblum was elected inaugural president of the FSFF, with a full board of directors consisting of Alessandra Graziottin as vice president, Irwin Goldstein as secretary, André Guay as treasurer, and directors-at-large Anne Davis, Moustafa Eyada, François Giuliano, Roy Levin, Rosella Nappi, Kwangsung Park and Leonore Tiefer. Irwin Goldstein acted as meeting chair one last time, Abdul Traish as scientific program chair, and Mitch Tepper as online services chair. Other chair positions would be determined by a set of bylaws, which were necessary for the organization to become a legal entity. Ira Sharlip, who had written bylaws for the Sexual Medicine Society of North America, was asked to chair this committee. The bylaws designated that half the board positions would terminate each year, providing continuity in the organization, and that the board and each committee would be balanced in terms of gender, geography, and discipline.

To enable the dissemination of information presented at this meeting, podium and poster presenters were invited to submit manuscripts for publication in a FSFF-sponsored journal supplement. A total of 27 published papers were dedicated to a multidisciplinary collection of manuscripts on sexual function and dysfunction in women. State-of-the-art lecturers were invited to submit manuscripts to a peer-reviewed journal where the papers would be published as a group.

Although it was held just weeks after the 9/11 tragedy, approximately 400 people came to Boston from around the world for the FSFF meeting, a tribute to the interest in and desire to learn about this field (Fig. 1.2.6). The W J Weiser Company had been hired to manage FSFF. Irwin Goldstein, as both meeting chair and secretary, and his colleague Abdul Traish, scientific program chair, worked together to ensure the success of this meeting. The format continued to include state- of-the-art lectures, symposia, podium presentations, and moderated posters. Topics included cancer, childbirth, cultural aspects of FSD, diagnostic studies, sexually transmitted diseases, vulvar pain, and androgen insufficiency, as interest in the controversial area of androgens continued (Fig. 1.2.7). Again, all presenters were offered the opportunity to submit manuscripts to be considered for an ISSWSH-sponsored journal supplement.

Figure 1.2.7. Androgen panel in 2001 with Aline Zoldbrod, Jean Fourcroy, Fernand Labrie, Abdul Traish, Richard Spark, and André Guay at the podium.

At the 2001 business meeting, the bylaws that had been written during the course of the year were approved by the membership (Fig. 1.2.8). After much heated discussion, the organization was renamed the ISSWSH. This name reflected the international nature of the organization. The annual meeting and the list-serve (see below) with instant communication to members around the world would allow communication on a daily basis as well as in-depth annually.

ISSWSH is “a multidisciplinary, academic clinical and scientific organization whose purposes are: (1) to provide opportunities for communication among scholars, researchers, and practitioners about women’s sexual health; (2) to support the highest standards of ethics and professionalism in research, education, and clinical practice of women’s sexual health; and (3) to provide the public with accurate information about women’s sexual health”.

Figure 1.2.6. Lunch during the 2001 meeting.

Figure 1.2.8. Irwin Goldstein delivering the secretary's report with André Guay, treasurer; Alessandra Graziottin, vice president; and Sandra Leiblum, president, on the dais.

The elected board met for the first time in Boston (Fig. 1.2.9) . Membership fees were levied, and applications were required for current and future members. Membership became limited to those who could demonstrate an involvement with female sexual function and/or dysfunction. Affiliate membership was granted to those working in industry, while honorary membership could be awarded by the board to individuals who demonstrated a serious interest in female sexuality or had made an important contribution to the field but did not qualify for active membership. While the cost of membership was the same for active and affiliate members, the ability to hold office or serve as a committee chair was restricted to active and honorary members. Privileges afforded to all members included discounted registration fees and access to the list-serve. Started by Irwin Goldstein for members of the Female Sexual Function Forum, the list-serve was made a resource for difficult case questions among the ISSWSH membership under online services chair Mitch Tepper. The final important decision by the board that first year was that the directors-at-large would add a year to their original terms of service, rather than half rotating off in 2001, to aid in the development of the new society.

The board “met” throughout the year by teleconference and e-mail, voting on issues that did not require face-to-face discussions. Then, in October 2002, the Vancouver meeting became truly international, leaving Boston for the first time (Fig. 1.2.10). Approximately 400 members and future members came to Vancouver for the ISSWSH meeting. The number of abstracts had increased and quality of submissions had improved. Deemed necessary during the previous year, the bylaws were amended at the business meeting; and the contract with the management company was renewed for 3 years. The organization was truly established.

Figure 1.2.9. First elected board of the ISSWSH.

Figure 1.2.10. The board of ISSWSH in 2002 in Vancouver.

This ISSWSH meeting was held shortly after the publication of the Women’s Health Initiative. In response to the growing interest in this area, a lunchtime seminar was added to the program to include the latest information. Although it was still difficult to understand the integration between the biology and psychology of women’s sexual function and dysfunction, members were becoming more open to the concept. Discussion and questions were the heart of the meeting, as the organization encompassed people of various disciplines with diverse areas of knowledge and expertise as well as varied opinions. The scientific program committee had each symposium span both the biologic and psychologic realms, in the basic science and the clinical arenas. Topics included further discussion on the role of androgens, vulvar vestibulitis syndrome, and sexual arousal, as well as a symposium on diabetes, multiple sclerosis, spinal cord injury, and female sexuality. A wide range of topics was discussed in the state-of-the-art lectures, symposia, podium, and moderated poster presentations. Both the membership and the board of directors were feeling their way with a new society in a new field, but there was a strong impetus to continue broadening knowledge with diversity of thought and research. ISSWSH was more than a name and a logo - it was a vibrant organization paving a path in a new direction (Figs 1.2.11 and 1.2.12).

In 2003, the organization finally left North America. ISSWSH met in Amsterdam under the leadership of Cindy Meston. The board discussion focused on the decrease in meeting attendance by Americans when the location moved to Europe. Irwin Goldstein was asked to chair a development committee to work with industry on long-term goals to help ISSWSH become financially stable, modeled on similar committees in sexual medicine societies. Sandra Leiblum, the chair of the affiliations committee, recommended that ISSWSH establish collaborative relationships when the benefit(s) to ISSWSH would be equal to or greater than the benefit(s) to the other organization. The board voted to become a member society of the World Association of Sexual Health (WAS).

Figure 1.2.11. Incoming president Cindy Meston presenting outgoing president Alessandra Graziottin with a plaque commemorating her year as president of ISSWSH.

Figure 1.2.13. Annamaria Giraldi, Roy Levin, and Per Lundberg socializing in Amsterdam.

Figure 1.2.12. The incoming board of ISSWSH in 2002 at the end of the Vancouver meeting.

Figure 1.2.14. Lisa Scepkowski explaining her poster to Marc Gittelman in Amsterdam.

At the 2003 meeting, symposia topics included desire, epidemiologic studies, neurologic aspects of FSD, and new ways of defining and researching FSD. Members heard fascinating state- of-the-art lectures on the necessity of estrogens as well as androgens for modulation of sexual function in women and on neuronal progestin receptors. In an effort to get significant numbers of registrants and appropriate industry support for future meetings, locations were discussed for meetings several years into the future (Figs 1.2.13 and 1.2.14).

Incoming president Lorraine Dennerstein initiated many new developments at the second board meeting in Amsterdam, including recruitment of young researchers to ISSWSH to grow the membership, a newsletter to be edited by Lori Brotto, and more focus on financial stability supported by the new development committee. The board heard a presentation from Wolf Utian regarding the inception and growth of the North American Menopause Society (NAMS), a possible model for ISSWSH. The board had the energy to strive for a stronger, more exciting year to come.

The 2004 annual meeting returned to North America, taking place in Atlanta, Georgia. ISSWSH collaborated with the National Institutes of Health (NIH), cosponsoring the meeting on “Vulvodynia and Sexual Pain Disorders in Women” held the day before. Many people attended both meetings, as their content was complementary rather than repetitive. In addition, several pharmaceutical companies chose to hold their advisory board meetings before and after the meeting, thus supporting ISSWSH and giving both increased visibility and credibility to the young society.

Prior to the opening of the meeting and concomitant with the meeting of the board of directors, a half-day precourse on the “Practical Management of Women’s Sexual Dysfunction” from the psychologic and biologic points of view was offered for the first time, taught by the first and second presidents and first secretary of ISSWSH. This course was designed in response to the increasing demand for instruction in the “how to’s” of diagnosis and treatment. The enrollment exceeded expectations, with 160 attendees. The response triggered the board’s decision to develop a program of educational courses, with Irwin Goldstein as chair of the committee, including the precourse, practical courses running concurrently with the scientific sessions of the annual meeting, and free-standing courses at other locations and times of year (Fig. 1.2.15).

Symposia topics at the 2004 annual meeting included the old favorite, sex steroid hormones, the effect of illness and its treatment on FSD, reproductive concerns, and sexually transmitted diseases. The theme of the conference was sexuality in context, with broadened topics to increase attendance and interest in the society. There were approximately 350 people registered for the year’s meeting - a significant increase from 2003. In addition to the traditional prize essays, a new award was named for a member of the board of directors who had passed away unexpectedly in August. The Bjorn Lundquist New Investigator Award was given for the first time, including a monetary prize, as part of an outreach initiative to encourage students and new researchers (Fig. 1.2.16). Posters were judged and authors awarded certificates in the areas of basic science in psychology, basic science in biology, clinical psychology, and clinical biology. The scientific quality of abstracts was significantly better than in the past, leading to an increased number of podium presentations.

Figure 1.2.15. The board of ISSWSH in 2004 in Atlanta.

Figure 1.2.16. Board member Lori Brotto presenting the first Bjorn Lundquist New Investigator Award to Alessandra Rellini.

The organization continues to grow as more and more investigators and practitioners become interested in the field of FSD. The list-serve, now under the watchful eye of Alan Altman, has become a much-needed and much-used resource by members around the world whose intellectual curiosity or practical needs require answers to questions at any given time. Members support members by offering opinions and advice. Members know that if they read one of the many entries by André Guay, for example, they will be given insight into androgen therapy by a respected source without having to leave their own offices. ISSWSH serves in this way not only as a force for unification of this multidisciplinary field, but also as a resource for dissemination of the material which we are discovering every day.

Conclusion

To offer optimum opportunities for members and nonmembers to question and learn about women’s sexual health, ISSWSH will continue to make changes to the meeting format. The 2005 annual meeting will be held in Las Vegas, Nevada, under the leadership of ISSWSH’s first male president, Stan Althof, and the 2006 meeting, moved from October to March, is scheduled for Lisbon, Portugal. In 2007, to commemorate the original Cape Cod conference 10 years ago, ISSWSH will return to the area. The annual meeting will continue to rotate from the North American East Coast, to the West Coast, to Europe until such time as the membership numbers can support its going to other continents. Fortunately for everyone, electronic communication brings the international membership together and shall remain a vital part of the organization.

The increased strength of abstract submission for each year’s annual meeting is a result of increased knowledge in the field of women’s sexual function and dysfunction. This directly reflects the increased interest, increased research, and increased sharing of information on sexual function and dysfunction in women that is the ultimate purpose of the ISSWSH. The organization may be young, but its membership is vibrant and focused on learning more about women’s sexual health.

References

1. Basson R, Berman J, Burnett A et al. Report of the International Consensus Development Conference on female sexual dysfunction: definitions and classifications. J Urol 2000; 163: 888-93.

2. Tiefer L. The “consensus” conference on female sexual dysfunction: conflicts of interest and hidden agendas. J Sex Marital Ther 2001; 27: 227-36.

3. Kaschak E, Tiefer L, eds. A New View of Women’s Sexual Problems. New York: Haworth Press, 2001.