Increased Research Funding, Collaboration Key to Addressing Endometriosis

Izzy Okparanta

Patient advocate Rebecca Black suffered for nearly a decade, undergoing numerous surgeries and dozens of doctor visits, before being accurately diagnosed with endometriosis. Black is not alone. Nearly three-fourths of women with endometriosis experience a misdiagnosis, and it can take almost seven years on average for a woman to be accurately diagnosed. Speakers representing academia, providers and patients discussed ways to address the often-debilitating condition during the Society for Women’s Health Research’s April 10 panel discussion in Washington, D.C.

Endometriosis, abnormal tissue growth outside the uterus, can lead to severe pain and infertility. Despite the fact that it affects at least 10% of reproductive-age women, “there is no non-invasive way [to diagnose endometriosis], though some groups are looking at biomarkers,” said Sawsan As-Sanie, M.D., MPH, director, University of Michigan Endometriosis Center.

There are also very few available treatments on the market.

“Most current treatments are contraception, which prevents women from getting pregnant,” As-Sanie said. “We need targeted therapies for women actively trying to get pregnant.” While surgery can be used to remove endometriosis lesions, they sometimes return.

Stacey Missmer, Sc.D., said the lack of diagnostic and treatment options is due to low funding, which “keeps creative scientists out of this field.” Endometriosis research received only $10 million in federal funding in FY16. One study indicated that annual direct health care costs of endometriosis amount to more than $2,800 per patient. 

Collaboration between gynecologists, various specialists and mental health professionals is crucial to improving the treatment and management of endometriosis, said Alexandra T. Milspaw, Ph.D., MEd, founder and owner 4Directions Counseling LLC. Black added that patients must also have an active role in the endometriosis treatment pipeline. “I truly believe had I not been so diligent, it would have taken me longer [to be diagnosed]. I believe it’s up to us as patients to say, ‘this is not OK.’ We have 15 minutes with doctors, we have to be prepared.”

Missmer said she remains optimistic about future advances in endometriosis research. “It’s a matter of funding but all the tools are there,” she said. “I’ve never seen so much attention on endometriosis. It’s going to be an exceptional next few years.”

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Funding research gives all of us a better chance of living a healthier life.
Pam Hirata, heart disease survivor