New alliance aims to improve lives of women living with endometriosis

New alliance aims to improve lives of women living with endometriosis

Nov 17 2020

Today, seven women's health-focused organizations – the American College of Obstetricians and Gynecologists (ACOG), the Endometriosis Association, AbbVie, HealthyWomen, the International Pelvic Pain Society (IPPS), GE Healthcare and Black Women's Health Imperative (BWHI) – announced the formation of the Alliance for Endometriosis to improve the lives of the one in 10 women of reproductive age living with this disease in the United States.

The Alliance for Endometriosis will begin by actively listening to the endometriosis community and encouraging them to share their experiences at AllianceForEndo.com and on social media using #LetsEndoThePain. The Alliance will then create a program with the goal of reducing – or eliminating – the stigma associated with endometriosis and encouraging more productive patient and physician conversations that lead to faster diagnoses and improved treatment options and experiences.

Endometriosis is a disease where the tissue that forms the inside lining of the uterus grows where it doesn't belong – sometimes on the ovaries, fallopian tubes and other organs found in the pelvic area. It can commonly cause swelling and period pain, as well as pain throughout the month and during sex.

Historically, women have felt forced to accept pain with their period because they are conditioned to think it's 'normal,' but it's not. After 40 years of calling attention to the pain and life disruption of endometriosis, we are deeply grateful that members of the women's health community and medical societies are working together to end the pain. Women in pain deserve to be heard and to have their symptoms treated seriously."

Mary Lou Ballweg, President and Executive Director, Endometriosis Association

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Beyond the physical symptoms, personal burdens are also often inflicted by endometriosis, including lost work, school and family time, with associated annual United States economic and health care costs estimated to be $69.4 billion. While awareness of endometriosis has increased in the last decade, serious challenges persist, including:

  • Time to diagnosis takes up to six to 10 years on average
  • Surgery remains the primary method for diagnosis
  • Period pain is viewed as being "normal" by society – including people with endometriosis, their loved ones and health care providers
  • There is a stigma associated with discussing menstrual health – both in society and in physician offices

Women with endometriosis experience real pain, deserve to be heard and believed, and to receive the best possible care. ACOG is committed to equipping our physicians with disease-specific education regarding diagnosis and evidence-based medical and surgical treatment as well as resources to help improve their dialogue and interactions with patients. We are proud to work with these organizations and the endometriosis community to progress this critically important conversation for women's health."

Ted L. Anderson, MD, PhD, FACOG, FACS, Immediate Past President of ACOG and Betty and Lonnie S. Burnett Professor of Obstetrics and Gynecology at Vanderbilt University Medical Center in Nashville, Tennessee

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