Over the weekend, global experts and opinion leaders on endometriosis came together from the realms of molecular science, research, industry, surgery and those struggling with the illness for the Endometriosis Foundation of America (EFA) Second Annual medical conference. Throughout both days of the conference, one significant message was clear: women are suffering, being misdiagnosed and continuously mistreated. Endometriosis is estimated to affect the lives of 1 out of 10 women, and although it may not be fatal, the disease holds devastating effects on the quality of life of a woman and all those in her life, personal and professional.
Chaired by EFA President, Tamer Seckin, MD, this event brought together an international panel of endometriosis experts along with Keynote Honorees, Caroline Gargett, BAppSci, MAppSci, PhD and David B. Redwine, MD, FACOG, ACGE, and expert speakers including Asgerally T. Fazleabas, PhD, Pinar Kodaman, MD, PhD, Linda Griffith, PhD, Keith Isaacson, MD, William Rodgers, MD, PhD, Victor Gomel, MD, Marta Meana, PhD, C.Y. Liu, MD, Harry Reich, MD, Resad Pasic, MD, Juan Salgado-Morales, MD and others.
At its core, the Foundation’s second annual scientific symposium dared to tackle dyspareunia— a provocative, politically-charged conundrum that has never before been presented in a dedicated setting. Dyspareunia, a known symptom of Cul-de-Sac endometriosis, remains a largely ignored crisis of female sexual health and well-being. Defined as painful sexual intercourse, dyspareunia is one of the many devastating symptoms that affects women in their most sexually active years, yet is rarely addressed. Lone Hummelshøj, Chief Executive of the World Endometriosis Research Foundation, revealed the far-reaching effects of dyspareunia on the patient - from her psychological well-being, self-esteem and body image to her relationships - in her presentation “Sex in the Morning? Perhaps not for Women with Endometriosis!” Driving her point home, Hummelshøj pointed to the World Health Organization’s earlier determination that a satisfying and safe sex life is, in fact, a “fundamental human right.” Hummelshøj also led a patient workshop, Painful Sex, encouraging open discussion with attendees and demonstrating that dyspareunia is a couple’s problem, not only limited to only the woman - making communication key.
The first day of the conference was comprised of a scientific and surgical symposium, in which healthcare providers and women’s health professionals who attended as delegates had the crucial opportunity to learn from the renowned faculty; it is the Foundation’s mission that such education be applied in those individuals’ own practices in order to improve the delivery of care to their endometriosis patients. During the first session, “Biochemistry & Molecular Science of Endometriosis,” famed Pathologist William Rodgers, MD, PhD illustrated the significance of an ongoing project of the Foundation—the establishment of a Tissue Procurement Facility. As Dr. Rodgers explained, studies on endometriosis cannot be done effectively without actual samples of the tissue, which are often lost in such surgical approaches as vaporization. In correspondence with these efforts, Linda Griffith, PhD and Keith Isaacson, MD of the MIT Center for Gynepathology Research, discussed current research efforts toward an understanding of the cues and signals of the disease, studying patient samples and comparing similarities and differences. The world’s foremost authority on stem cell research, Caroline Gargett, BAppSci, MAppSci, PhD, also presented her critical data concerning the role of endometrial stem cells in gynecological disease and how they can be targeted for potential treatment of the disease.
EFA Co-Founder Padma Lakshmi took the stage Friday to thank attendees and ask if those present would continue to “help us by spreading the word…be our soldiers in the field…so that younger generations of women do not go through what I went through.”
Introducing session two, “Love, Sex, Happiness & Endometriosis,” international microsurgery pioneer Victor Gomel, MD spoke of the urgent necessity for comprehensive disease education and understanding within the medical community. Dr. Gomel emphasized that a surgeon treating endometriosis must have the appropriate knowledge and interest in this field coupled with the willingness to follow a patient, in order to truly evaluate the effectiveness of her care. In his landmark presentation, Asteroid Detection, HOX Genes & Endometriosis, Dr. David Redwine reiterated the enigmatic nature of the disease—endometriosis is positionally static, following a pattern as it develops, rather than simply spreading at random; in tandem with this, aggressive excision has been demonstrated clearly to be the best option for satisfactory patient outcome. In concurrence with Dr. Redwine’s lecture, world-renowned surgeon Harry Reich, MD emphasized that medical treatment “never works, though it is looked at favorably by the health care industry due to costs.” Dr. Reich reiterated the message that excision surgery is essential to fighting against this disease.
Opening the second day, conference moderator Heather Roppolo-Guidone, EFA’s Chief Medical & Science Coordinator and Saturday Co-Chair, encouraged participating patients to take advantage of the open forum, saying “if we don’t speak for ourselves, no one will speak for us.” Recounting the origins of the conference, Dr. Seckin explained to the audience, “you are the reason that we got this going…we saw that patients were not being treated properly…we saw that we were missing things…and not being taught how to properly treat you.” He also reemphasized the mission of the Foundation: “we need to create awareness, along with education…I continue to look for the truth.” The patient-centric theme of Saturday’s workshops encouraged extensive dialogue between attendees and panel experts. The novel event – the first of its kind in the United States - gave patients and caregivers unparalleled access to leaders on the disease, affording the opportunity to exchange ideas, ask for guidance, share suggestions, and most importantly, allow women’s voices to be heard.
Currently, in addition to ongoing research projects and awareness efforts, the Endometriosis Foundation of America is looking ahead to next year’s Conference, Going to the Roots.