EFA2011: Let’s talk about sex and endometriosis

New York, 18-19 march 2011

The 2nd scientific symposium from the Endometriosis Foundation of America (EFA) took place this Friday and Saturday in New York City.

Chaired by EFA co-founder and president, Tamer Seckin, this exciting event brought together leaders in endometriosis from the realms of molecular science, research, industry and surgery, including EFA’s 2011 Honorees Caroline Gargett and David Redwine.

Let’s talk about sex

Up to 50% of women with endometriosis complain of painful intercourse

At its core, EFA’s second annual scientific symposium dared to tackle painful sex – 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 part 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 Hummelshoj, 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, Hummelshoj pointed to the World Health Organisation’s official statement that a satisfying and safe sex life is, in fact, a “fundamental human right.”

Marta Meana, professor of clinical psychology at the University of Nevada, proceeded to discuss what can be done when painful sex has become a problem.

The basic science

The first day of the conference was comprised of the EFA’s traditional scientific and surgical symposium, in which healthcare providers and women’s health professionals who attended as delegates had the opportunity to learn from the faculty.

Drs Asgi Fazleabas, Caroline Gargett and Tamer Seckin in deep conversation

The first session was an update on primate model data in endometriosis, presented by one of the leading authories in the field of uterine biology, Asgi Fazleabas.

Linda Griffith and Keith Isaacson of the MIT Centre 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, and the world’s foremost authority on stem cell research, Caroline Gargett, presented her critical data concerning the role of endometrial stem cells in gynaecological disease and how they can be targeted for potential treatment of the disease.

“Biochemistry & Molecular Science of Endometriosis,” pathologist William Rodgers illustrated the significance of EFA’s ongoing project – 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 vaporisation.

Love, sex, happiness and endometriosis

Introducing session two, “Love, Sex, Happiness and Endometriosis,” microsurgery pioneer Victor Gomel spoke of the urgent necessity for comprehensive disease education and understanding within the medical community.

Dr Gomel emphasised 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.

David Redwine, in his presentation, 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, according to Dr Redwine. In concurrence with this lecture, world-renowned surgeon Harry Reich emphasised 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.

EFA co-founder Padma Lakshmi took the stage Friday afternoon 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.”

Patient workshops

Heather Guidone chairing Saturday's session

Conference moderator Heather Roppolo-Guidone, EFA’s chief medical & science coordinator and Saturday co-chair, opened the second day by encouraging participating women and their partners 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.”

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.

See also

» All presentations (videos) from Friday’s scientific symposium
» How to cope with painful intercourse
» Family and partners of those with endometriosis
» Communications – one way to understand endometriosis

Acknowledgments

Photos by Meghan Flaherty for EFA