Reflections on Attending the 13th World Congress on Endometriosis

From May 17-May 21, team Citizen Endo was in Vancouver, Canada to attend the 13th World Congress on Endometriosis (WCE) — a very exciting trip considering WCE only happens once every 3 years and brings together the world’s foremost endometriosis researchers. Overall, 1200 delegates from 60 different countries attended! We presented our poster entitled “Towards Precision Medicine for Endometriosis: Dynamic Disease Characterization Through Temporal Tracking of Patient Reported Outcomes.” We were also grateful to participate in the 4th Workshop on Research Priorities in Endometriosis organized by WERF (World Endometriosis Research Foundation) and WES (World Endometriosis Society).

Mollie McKillop, PhD Candidate and Citizen Endo Team Member presenting our work!

There were a few themes that emerged throughout the conference. First, there was a strong emphasis on a more holistic and nuanced view of the disease — a befitting trend considering the theme of the conference was Turning Over a New Leaf. For example, presentations included discussion of endometriosis in the presence of general comorbidities, irritable bowel syndrome, sexual dysfunction (an entire session was devoted to this subject!), and pain among patients. We were particularly excited by Dr. Marina Kvaskoff’s synthesis talk on comorbidities in endometriosis. This was an update to the extensive literature review she carried out with her colleagues at Harvard under the leadership of Stacey Missmer to determine diseases associated with endometriosis. They had found increasing evidence that endometriosis patients seem to be at higher risk for co-occurring conditions like breast cancer, suggesting what patients probably already know — endometriosis is not good for your health in the long term! We were also excited about the work Jennifer Brawn and her thesis advisor Katy Vincent at Oxford carried out to better understand the complex nature of chronic pelvic pain. In her talk we learned how delayed medical treatment for chronic pelvic pain is associated with changes in the central nervous system that have the potential to exacerbate symptoms. Findings like this support the need for effective therapy and symptom management for women with endometriosis. We were delighted to see patient advocate, caregiver, and researcher Deborah Bush, from Endometriosis New Zealand, discussing patient-centered approaches to improve the quality of life for people with endometriosis. Such discussions are important so that the conversation on endometriosis treatment is not just about surgery, but rather part of a more holistic approach to symptom management that considers both medical and non-medical treatments.

13th World Congress on Endometriosis Closing Ceremony. Photo Courtesy of Marina Kvaskoff.‏

While there were a number of exciting themes and ideas discussed during the conference, there are still some research areas that seemed understudied. For example, we still do not know much about how or why endometriosis may recur in individuals with the disease — in particular why and how does the disease sometimes “come back” after excision surgery? Further, given that surgery is not the “be all and end all” for women with endometriosis, it is important to better understand the effectiveness of endometriosis treatments at scale (i.e., study different treatments in a large and diverse group of patients). In our work examining the data Phendo users have contributed thus far, it is clear women with endometriosis experiment with a wide range of treatments. But there still lacks research to describe how well these treatments work in patients’ day-to-day lives.

See you in Shanghai, China for the 2020 World Congress!

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