Q&A: Alliance seeks to improve endometriosis awareness

March is National Endometriosis Awareness Month. The observance was founded by the Endometriosis Association in 1993 and has since become recognized worldwide, according to the association.

The Alliance for Endometriosis — a coalition of medical societies and health companies seeking to improve the lives of women with the disorder — stated in a press release that endometriosis affects approximately 10% of women in the United States who are of reproductive age. The condition is associated with an annual health care and economic cost of $69.4 billion in the U.S.

Despite increasing awareness of endometriosis, the Alliance for Endometriosis — which consists of the American College of Obstetricians and Gynecologists (ACOG), the Endometriosis Association, HealthyWomen, the International Pelvic Pain Society, Black Women’s Health Imperative, AbbVie and GE Healthcare — said challenges remain, including the prolonged time to diagnosis, which, on average, takes 6 to 10 years. Stigma is also an issue, as many people consider menstrual pain “normal,” including patients with endometriosis as well as their friends, family and health care providers, according to the alliance.

Healio Primary Care spoke with Ted L. Anderson, MD, PhD, FACOG, FACS, a past president of ACOG and professor of obstetrics and gynecology at Vanderbilt University Medical Center in Nashville, Tennessee, to learn more about the effect of endometriosis on women, additional information about the Alliance for Endometriosis and more.

Healio Primary Care: What impact does endometriosis have on these women?

Anderson: The impact of endometriosis can be wide-ranging and can change over time. Endometriosis can cause pain, including severe pain, before and during the menstrual cycle and heavy menstrual bleeding.

The condition can also cause pain during sexual intercourse. It can affect the bladder or the bowel, causing pain during urination or bowel movements. In some women, it can make it difficult to get pregnant. In fact, some women may not experience any pain and may discover they have endometriosis because of fertility challenges.

Healio Primary Care: Why was the Alliance for Endometriosis founded? What is its purpose?

Anderson: The Alliance for Endometriosis was created as a valuable resource for patients and clinicians alike. Being able to address the multiple facets of endometriosis in a coordinated fashion will provide medical, surgical and educational benefits as well as a comprehensive system of resources and support for patients suffering from endometriosis. Increasing the dialogue between patients and clinicians will elucidate the multiple facets of endometriosis and the problems they face from it to allow better recognition and understanding of how to care for these patients more effectively and comprehensively.

The most important impact that the alliance will have immediately is bringing together resources from a variety of diverse perspectives (industry, education, clinical support, the patient voice, patient support) to focus on identification and treatment of endometriosis. Patients will play a critical role by describing their journey with endometriosis and elucidating their desires and needs for treatment and support. We as clinicians need to encourage patients to engage with the alliance to get the help they need but also to improve endometriosis care for generations to come.

Healio Primary Care: What are some common misconceptions physicians have about endometriosis? How can these misconceptions be corrected?

Anderson: There is no uniform set of clinical symptoms experienced or described by women with endometriosis. Even if clinicians consider common symptoms like menstrual‐associated pain, there is a lot of variability in the normal range so that physicians do not always recognize the possibility of endometriosis.

Further, perception of pain differs among patients; they often have no frame of reference of what is “normal” or excessive” pain is. There is hesitance by some OB/GYNs to pursue surgical evaluation before trying several medical options, especially in the younger years when endometriosis is more likely to present. It is critical that physicians recognize symptoms that could be endometriosis and think of endometriosis as a possibility.

The burdens of endometriosis, in addition to the cost of seeking care, medications and ultimately surgery, include lost time in activities due to pain (eg, work, social activities, sports) and possible contributions to infertility. In severe cases, other organ systems can be affected (eg, kinking or blocking the ureters or invading the bowel), causing serious medical problems

Healio Primary Care: What is the most important thing you want primary care physicians to know about endometriosis?

Anderson: The burden of endometriosis will be addressed mostly by increasing early recognition and education on a variety of effective interventions that can be tailored to patients’ symptoms and outcomes desires, whether that is pain, bleeding, fertility, etc. As awareness of endometriosis increases in the clinical and patient populations, patients will be more likely to seek help earlier, be able to partner with an informed health care team, be a more active and informed driver of their health care, and thus reduce the long‐term sequelae of the disease.

We really need to establish evidence‐based medical and surgical treatments for different levels of endometriosis. Further, we need to have a mechanism for training gynecologic surgeons in advanced surgical techniques to treat endometriosis and the sequelae of the disease. Finally, we need to establish centers of excellence to identify where patients with endometriosis can be assured they are getting state‐of‐the‐art evidence‐based interventions.

References:

The Alliance for Endometriosis. Home page. https://www.allianceforendo.com/. Accessed March 17, 2021.

The Alliance for Endometriosis. New alliance to address multiple pain points for women living with endometriosis. https://www.prnewswire.com/news-releases/new-alliance-to-address-multiple-pain-points-for-women-living-with-endometriosis-301173039.html. Accessed March 17, 2021.

The Endometriosis Foundation. Endometriosis Awareness Month: Events around the world. https://www.endofound.org/endometriosis-awareness-month-2021-events-around-the-world Accessed March 17, 2021.