Alliance for Endometriosis Press Release
New Alliance to Address Multiple Pain Points for Women Living with Endometriosis
- The Alliance for Endometriosis aims to eliminate stigma and encourage more open and productive conversations that lead to faster diagnoses and improved treatment options and experiences in endometriosis
- Individuals affected by endometriosis or endometriosis symptoms can share their experiences at AllianceforEndo.com and on social media using #LetsEndoThePain
Washington, D.C., November 16, 2020 (PR NEWSWIRE) – 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.i
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.i
“Historically, women have felt forced to accept pain with their period because they are conditioned to think it’s ‘normal,’ but it’s not,” noted Mary Lou Ballweg, President and Executive Director of the Endometriosis Association. “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.”
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.ii,iii 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 averageiv,v
- Surgery remains the primary method for diagnosisvi
- 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,” stated 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. “We are proud to work with these organizations and the endometriosis community to progress this critically important conversation for women’s health.”
About the Alliance for Endometriosis
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) have partnered to form the Alliance for Endometriosis with a single goal: to improve the lives of people with endometriosis. By working together, listening to people impacted by endometriosis and understanding what the endometriosis community wants and needs, the Alliance for Endometriosis will create a program that we hope will reduce – or eliminate – the stigma associated with this disease and encourage more productive patient and physician conversations that lead to faster diagnoses and improved treatment options and experiences. If you have endometriosis or endometriosis symptoms, the Alliance for Endometriosis wants you to be heard, believed and supported. Learn more and share your experience with endometriosis at AllianceForEndo.com.
Endometriosis, or endo, 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 – which can cause chronic pain.i Symptoms related to endometriosis vary, and some symptoms are associated with pain that can be debilitating and may interfere with day-to-day activities.ii Common symptoms of endometriosis include swelling and period pain, as well as pain throughout the month and during sex.i Despite affecting one in 10 women of reproductive age in the United States,i endometriosis has been underprioritized as an important women’s health issue.
ACOG Media Contact
+1 (202) 863-2423
Endometriosis Association Media Contact
Mary Lou Ballweg
+1 (414) 355-2200
AbbVie Media Contact
+1 (312) 550-2998
HealthyWomen Media Contact
+ 1 (631) 754-0460
IPPS Media Contact
Georgine Lamvu, MD, MPH, IPPS Board Chair
GE Healthcare Media Contact
+1 (262) 202-5430
BWHI Media Contact
+1 (202) 787-5930
i The American College of Obstetricians and Gynecologists (2019). Frequently Asked Questions: Endometriosis. https://www.acog.org/Patients/FAQs/Endometriosis.
ii Fourquet J, et al. Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity. FertilSteril. 2011;96(1):107-112.
iii Simeons S, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod. 2012;27(5):1292-1299.
iv Giudice LC, et al. Endometriosis. Lancet. 2004 Nov 13-19;364(9447):1789-99.
v Nnoaham KE, et al. Impact of Endometriosis on Quality of Life and Work Productivity: A Multicenter Study Across Ten Countries. FertilSteril. 2011 Aug;96(2):366-373.e8.
vi Armstrong C. ACOG Updates Guideline on Diagnosis and Treatment of Endometriosis. Am Fam Physician. 2011 Jan 1;83(1):84-85.