November 30, 2021

The Alliance for Endometriosis Survey Reveals Actions Needed to Improve the Endometriosis Patient Experience

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- Survey found that 90% of people with endometriosis are disbelieved, dismissed or ignored by others at least monthlyi
- More than 60% reported they want validation that their endometriosis symptoms aren’t “normal” or “all in their head” and more than 50% said that more detailed education and resources about how endometriosis affects patients could improve their conversationsi
- The Alliance for Endometriosis has launched an Action Plan to address the survey findings, aiming to eliminate stigma and encourage more open and productive conversations that lead to faster diagnoses and improved treatment experiences
Washington, D.C., Nov. 30, 2021 (PR NEWSWIRE) – Today, the Alliance for Endometriosis announced findings from a national public survey that shed light on people’s experiences with endometriosis-related stigma and the disconnect in conversations between patients and health care professionals. The survey revealed that people with endometriosis believe there is a lack of understanding about their experience with the disease among friends, family and health care professionals, including:
  • People with endometriosis have been told their symptoms are a “normal part of being a woman” by family, friends, or employers (62%) and health care professionals (42%).[i]
  • Four out of 10 survey respondents shared that discussions with health care professionals – including OB/GYNs, primary care physicians, nurse practitioners, emergency room doctors and other professionals who are managing their endometriosis care – are not open or productive.
  • Seventy percent believe that health care professionals have limited awareness of the impact of endometriosis, and wish that they understood the physical pain (76%) and the inability to participate in life events (68%) caused by endometriosis symptoms.i
 
The Alliance for Endometriosis is a group of organizations – including AbbVie, the American College of Obstetricians and Gynecologists (ACOG), the Black Women’s Health Imperative (BWHI), the Endometriosis Association, GE Healthcare, HealthyWomen and the International Pelvic Pain Society (IPPS) – working together to improve the lives of people with the painful condition. While progress has been made in recent years to address the challenges associated with endometriosis, the Alliance survey findings reinforce that more work needs to be done.
 
As a result of the findings and to address these persistent unmet patient needs, the Alliance for Endometriosis created an Action Plan 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. As part of this Action Plan, the Alliance will:
  • Share stories that illustrate the unique experiences of endometriosis with people who may not fully understand the disease and its impacts.
  • Educate health care professionals about the physical, emotional, social and financial impact of endometriosis, using research that supports and validates different patient experiences.
  • Work with health care professionals who may not be familiar with endometriosis to help them identify the many signs of endometriosis and to foster more open and productive conversations. 
 
“The impact of endometriosis goes far beyond its physical symptoms, and it is critical to the Alliance that we capture the experiences of people managing this disease everyday so we can accurately address the needs of the community,” said Beth Battaglino, RN-C, chief executive officer, HealthyWomen. “We are grateful for those who shared their stories and experiences in our survey, which have further motivated us to address the stigma associated with endometriosis and create meaningful change for these patients.”
 
Endometriosis is a chronic and painful disease that occurs when tissue that is similar to the lining of the uterus grows where it doesn’t belong. Pain from this condition is often ignored or dismissed as “normal,” and many people in the United States spend years suffering from symptoms without the support they need.
 
“The Alliance for Endometriosis believes that our collective efforts can build on the current momentum to create a positive future for the endometriosis community, far more than any one group or individual alone.” said Georgine Lamvu, MD, PhD, CPE, chair of the IPPS Executive Board. “We look forward to continuing our work with the endometriosis community on the Alliance for Endometriosis Action Plan that will help change what it means to live with endometriosis and pave the way for a better future.”
 
This United States survey was conducted between November 2020 and January 2021 and responses were obtained from 1,835 people, which included 1,817 individuals who were either diagnosed or were experiencing endometriosis symptoms and had discussed those symptoms with a health care professional. The online survey was sponsored by AbbVie and developed in consultation with the Alliance members, including ACOG, BWHI, the Endometriosis Association, GE Healthcare, HealthyWomen and IPPS.
 
To learn more about the Alliance for Endometriosis survey, Action Plan or to share your own experience with endometriosis, visit AllianceForEndo.com.
 
About the Alliance for Endometriosis
The Alliance for Endometriosis is a group of organizations with a single goal: to improve the lives of people with endometriosis. Together, AbbVie, the American College of Obstetricians and Gynecologists (ACOG), the Black Women’s Health Imperative (BWHI), the Endometriosis Association, GE Healthcare, HealthyWomen and the International Pelvic Pain Society (IPPS) hope to eliminate stigma associated with this disease and encourage more open and productive conversations that lead to faster diagnoses, better education 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.
 
About Endometriosis
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.[ii] 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, [iii] Common symptoms of endometriosis include swelling and period pain, as well as pain throughout the month and during sex.ii Despite affecting one in 10 women of reproductive age in the United States,ii endometriosis has been underprioritized as an important women’s health issue.
 
ACOG Media Contact
Megan Christin
+1 (202) 863-2423
MChristin@ACOG.org
 
Endometriosis Association Media Contact
Mary Lou Ballweg
+1 (414) 355-2200
MaryLou@EndometriosisAssn.org
 
AbbVie Media Contact
Raquel Powers
+1 (312) 550-2998
Raquel.Powers@AbbVie.com
 
HealthyWomen Media Contact
Stefanie Williamson
+ 1 (631) 754-0460
Stefanie@HealthyWomen.org
 
IPPS Media Contact
Georgine Lamvu, MD, MPH, IPPS Board Chair
Info@PelvicPain.org
 
GE Healthcare Media Contact
Nader Abou-Guendia
+9714 4296588    
Nader.Abou-Guendia@GE.com       
BWHI Media Contact
Monica Coleman
+1 (202) 787-5930
MColeman@BWHI.org
 
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Survey results are based on a questionnaire-based public survey conducted between November 2020 and January 2021. Total sample size was of 1,835 people who are either diagnosed with endometriosis (n=860), have endometriosis symptoms (n=957) or neither (n=18). 
US-GYNEN-210032
 
[i] Data on File. REF TBD.
[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] Greene R, et al. Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis. FertilSteril. 2009;91(1):32-39.