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Elucidating Endometriosis: Persistent Gaps in Research & Care

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September 11, 2023 - September 12, 2023

Endometriosis is a chronic gynecological disease that affects more than 200 million women worldwide. Endometrial lesions tend to form in the pelvic cavity outside of the uterus, causing pain in a woman’s pelvis and back, between periods, and with intercourse, as well as heavy menstrual bleeding and infertility. In fact, 30-50% of individuals with endometriosis experience infertility. 

Although endometriosis can begin in adolescence and also affect postmenopausal women, it is most commonly diagnosed in a woman’s 30s or 40s. Endometriosis can often go undetected and inadequately treated for a significant period of time. This delay is primarily due to the societal stigma surrounding menstruation and gynecological disorders, which has been shown to postpone diagnosis up to 6.7 years. Moreover, because there is no cure for endometriosis, it is critical that women are engaged and empowered throughout their journey with this chronic condition and supported in living a high quality of life. 

SWHR convened an interdisciplinary Endometriosis Education Working Group of health care providers, researchers, patients and patient advocates, and health care policy leaders for a closed, roundtable meeting in September 2023. During the roundtable, the Working Group discussed the impact of endometriosis on women’s health, with an emphasis on addressing persistent gaps in diagnosis and treatment. Working Group members also had the opportunity to participate in meetings with Congressional offices to discuss strategies to advance endometriosis research and care for all women. 


September 11, 2023
September 12, 2023
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  • Review the state of science and explore strategies to address knowledge gaps and unmet needs related to the research, diagnosis, and treatment of endometriosis in women across the lifespan
  • Identify opportunities to leverage innovation, increase access to equitable care, and reduce disparities and disease burden for women living with endometriosis
  • Promote science-based health care policies around endometriosis to improve patient outcomes
  • Develop materials to expand education, raise awareness, and remove stigma about endometriosis for patients, health care providers, and policy stakeholders.

Working Group Participants

Sawsan As-Sanie, MD, MPH, Associate Professor, Department of Obstetrics and Gynecology, University of Michigan

Olga Bougie, MD, MPH, FRCSC, Assistant Professor, Queen’s University

Shannon Cohn, JD, Director, Producer, Below the Belt

Sarah Bethany Dominguez, PT, MSPT, CLT, PYT, CMTPT, WCS, Owner and Therapist, Foundational Concepts, Inc.

Idhaliz Flores, PhD, Professor Department of Basic Sciences, Department of OBGYN, Ponce Health Sciences University, Ponce, Puerto Rico

Heather Guidone, BCPA, Program Director, Center for Endometriosis Care

Soyini Hawkins, MD, MPH, FACOG, Attending Physician, Fibroid and Pelvic Wellness Center of Georgia

Lauren Kornegay, Executive Director, Endo Black Incorporated

Iris Kerin Orbuch, MD, Director, Advanced Gynecologic Laparoscopy Center

Lindsey Peters, Patient and Patient Advocate

Jeanne Rebillard, Director of Communications & Government Relations, Endometriosis Foundation of America

Jenneh Rishe, BSN, RN, Founder and Executive Director, The Endometriosis Coalition Inc.

Miguel Luna Russo, MD, FACOG, Director, Endometriosis, OB/GYB, & Women’s Health Institute, Cleveland Clinic Ohio

James Segars, MD, Professor and Division Director, Department of Gynecology and Obstetrics, Johns Hopkins University School of Medicine

Jessica Shepherd, MD, MBA, Founder and CEO, Sanctum Med + Wellness

Jessica Shim, MD, Pediatric and Adolescent Gynecologist, Boston Children’s Hospital

Sony Sukhbir Singh, MD, FRCSC, Professor and Chair, Department of OB/GYN and Newborn Care, Faculty of Medicine, University of Ottawa & The Ottawa Hospital

Melissa Jean Tucker, BSN, RN, PHN, CMSRN, Hospice Compliance, Quality, & Education Program Manager, Essentia Health St. Mary’s Hospice and Palliative Care

Wendaline VanBuren, MD, Radiologist and Associate Professor, Mayo Clinic Rochester


Support for this educational program has been provided by Sumitomo Pharma. SWHR maintains independence and editorial control over program development, content, and work products.

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