Press Release

Disclosures: The authors report no relevant financial disclosures. The survey was sponsored by AbbVie.
January 05, 2022
2 min read

Survey indicates need to improve endometriosis awareness


Press Release

Disclosures: The authors report no relevant financial disclosures. The survey was sponsored by AbbVie.
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People with endometriosis believe their friends, family and health care professionals lack understanding about their experience with the disorder, according to a national online survey conducted by the Alliance for Endometriosis.

“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 every day so we can accurately address the needs of the community,” Beth Battaglino, RN-C, CEO of alliance member organization HealthyWomen, said in a press release.

According to a survey of people with endometriosis, 90% are disbelieved, dismissed or ignored by others monthly; 76% wished health care professionals understood their physical pain; and 62% have been told their symptoms "are part of being a woman."
Source: Press Release
Beth Battaglino

According to the Alliance for Endometriosis, the results illustrate the disconnect between patients and health care professionals as well as the stigma related to endometriosis. For example:

90% of people with endometriosis said they are disbelieved, dismissed or ignored by others at least monthly.

People with endometriosis have been told their symptoms are a “normal part of being a woman” by family, friends or employees (62%) and by health care professionals (42%).

More than 60% said they want validation that their symptoms aren’t “normal” or “all in their head.”

More than 50% said more detailed education and resources about how endometriosis affects patients could improve their conversations.

Four of 10 respondents said their discussions with health care professionals — including OB/GYNs, primary care physicians, nurse practitioners, ED doctors and others managing their endometriosis care — are not open or productive.

70% believed health care professionals have limited awareness of the impact of endometriosis and wish these professionals understood the physical pain (76%) and the inability to participate in life events (68%) caused by endometriosis symptoms.

While there has been progress in recent years to address the challenges associated with endometriosis, the members of the Alliance for Endometriosis — which, in addition to HealthyWomen, also include AbbVie, ACOG, the Black Women’s Health Imperative, the Endometriosis Association, GE Healthcare and the International Pelvic Pain Society (IPPS) — said these results reinforce that more work needs to be done.

Based on these findings and the persistent unmet needs of patients at large, the alliance said it has created an action plan designed to reduce or eliminate the stigma associated with endometriosis and encourage more productive patient and physician conversations that lead to faster diagnoses and improved treatment options and experiences.

As part of the plan, the organization said it will share stories that illustrate the unique experiences of endometriosis with people who may not fully understand the disorder and its impacts.

Also, the Alliance for Endometriosis said it will educate health care professionals about the physical, social and financial impacts of endometriosis, as well as work with those who may not be familiar with the disorder to help them identify its many signs and foster more open and productive conversations with patients.

“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,” Georgine Lamvu, MD, PhD, CPE, chair of the IPPS Executive Board, said in the press release. “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.”

The survey was conducted between November 2020 and January 2021. Responses were collected from 1,835 people, including 1,817 individuals who were diagnosed with or were experiencing symptoms of endometriosis and who had discussed those symptoms with a health care professional. It was sponsored by AbbVie and developed in consultation with alliance members.