The formation of the Alliance for Endometriosis

December 7, 2020
Bob Kronemyer

Freelance writer for Contemporary OB/GYN

Seven women’s health-focused organizations have formed the Alliance for Endometriosis to improve the lives of women afflicted with the disease.

Georgine Lamvu, MD, MPH, a professor of ob/gyn at the University of Central Florida College of Medicine in Orlando, said that “the Alliance aims to expand the conversation, build awareness and education, reduce stigma and facilitate communication within the community so that the women who are impacted by this disease can receive proper and efficient care.”

Lamvu is Chair of the Board of the International Pelvic Pain Society (IPPS), one of the 7 entities to forge the alliance, along with AbbVie, the American College of Obstetricians and Gynecologists, Black Women’s Health Imperative, the Endometriosis Association, GE Healthcare, and HealthyWomen.

“While our first step is primarily focused on listening to the patient experience, we will use the information we collect to create educational programs for both patients and healthcare providers,” Lamvu told Contemporary OB/GYN.

The Alliance will also target the research community. “By reducing stigma and increasing awareness about endometriosis, we hope to drive more research and funding for treatment options and diagnostic tests,” Lamvu said. “It is very important to the Alliance to impact women with endometriosis and the community that surrounds and supports them.”

As a first step, the Alliance will listen to women with endometriosis via social media and survey responses, followed by using the information collected to develop programs that increase awareness and decrease stigma around the disease. “The Alliance will share the findings with the general population and healthcare providers after identifying the common themes women report having experienced,” Lamvu said.

Besides eradicating the stigma associated with discussing menstrual health, both in society and in physician offices, the Alliance aims to shorten the time to properly diagnosis endometriosis, which currently can take up to 10 years.

The Alliance is realistic, however, that its goals are bold and that it could take several years to achieve all of them. “That is why the program has multiple components,” Lamvu said.

The Alliance’s approach is unique in that it is asking for patient input before researching solutions. “After we identify the common themes from women’s experiences with endometriosis, we will develop programs that facilitate or reduce the challenges they face,” Lamvu said.

The direct challenge of the Alliance in clinical practice will be to support clinicians in comprehending the greater impact the disease has on a patient’s life.

“Clinicians may not understand the suffering and diagnostic delay associated with endometriosis or the complexity of the treatment landscape,” Lamvu said.

Once clinicians are educated, they will be better equipped to identify symptoms and diagnose and treat their patients, according to Lamvu. “We sincerely hope that the education and resources we provide truly promotes shared decision-making between the patient and the provider, including individualized treatment planning,” she said.

Lamvu personally looks forward to the day when women feel comfortable addressing their pain and when endometriosis is introduced early in the diagnostic discussion. “But most of all, I am excited by the prospect of all women being included in the conversation about what treatments are best for them,” she said.

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Disclosures

Lamvu previously served as a research consultant for AbbVie. She currently serves as a consultant to SoLa LLC and LifeKit from Prescient Medicine, as well as an educational consultant to Medical Learning Institute Inc.