Endometriosis research came to the political forefront in the U.S. in 2020 when Congress proposed a significant reduction in medical research funding. This budget cut prompted the CEO of the Society for Women's Health Research (SWHR) to pen a letter to Congressional leaders. This letter urged a reevaluation of this funding, stating that endometriosis presents a significant burden to affected women and the healthcare system overall and that insufficient funding will stifle research on this poorly understood condition.
This ongoing conversation around endometriosis awareness has implications for providers in the U.S. and abroad.
Why Endometriosis Research Matters to Practitioners
The Endometriosis Foundation of America states that one in 10 OB/GYN patients (including trans and nonbinary patients) experience endometriosis, but it usually takes more than 10 years to receive a diagnosis. According to a 2020 article in Human Reproduction Open, women with "surgically verified endometriosis" experience far more pain than women with other gynecologic conditions.
But endometriosis does not simply cause pain. It also causes heavy periods, dyspareunia, infertility and bladder and bowel disorders. People can experience the condition from childhood all the way through the postmenopausal years.
The lack of endometriosis research funding ultimately makes the jobs of gynecologists more difficult. Because research on endometriosis is sparse in years of lower funding, physicians are only able to offer their patients advice or surgical intervention based on the current, potentially outdated, standard of care. This, in turn, can cause patients to be dissatisfied with their care and more likely to seek another doctor.
A University of Michigan Health Lab blog describing a review published in the American Journal of Obstetrics and Gynecology details how people with endometriosis are directly affected. The lack of innovation in endometriosis treatment contributes to the normalization of menstrual pain. Clinicians who are unfamiliar with the evaluation of pelvic pain can ultimately cause a patient's delayed diagnosis or leave them to simply accept their pain as normal, suffering in silence.
How Private Practice Gynecologists Can Help
So, how can private practice owners and other gynecologists help? In one word: advocate.
Advocate for the individual patient who is not aware that their pain is abnormal. Many people are reluctant to broach the subject of pelvic pain partly because of the way endometriosis pain has been stigmatized, even by the medical community. The website Endometriosis Reality offers downloadable clinical guides for interviewing patients about pain and includes a pain scale that is useful for determining severity.
While endometriosis can be definitively diagnosed via surgery, ultrasound can rule out other conditions and lead to faster diagnosis and treatment. OB/GYNs should stay up to date on treatment and diagnostic methods for endometriosis and pursue ultrasound training to fill any gaps in their knowledge.
Physicians can advocate for the endometriosis community at large by aligning with organizations that promote awareness and education. One such organization is the Alliance for Endometriosis, made up of partners like The American College of Obstetricians and Gynecologists, the International Pelvic Pain Society, Black Women's Health Imperative, the Endometriosis Association, HealthyWomen, AbbVie and GE Healthcare. Their goal is to eliminate stigma and "encourage more productive patient and physician conversations that lead to faster diagnoses and improved treatment options and experiences."
Progress Is Happening
The letter to Congress worked: The amount of funding for U.S. endometriosis research was doubled for 2021. But, the SWHR's letter was not the only factor. Advocacy from other groups, including the Alliance for Endometriosis, a campaign on Change.org that collected signatures for a petition to Congress, and ongoing efforts by groups such as EndoMarch all contribute to the growing public discussion necessary to bring about change.
Physicians should also encourage patients to advocate for themselves. The groups mentioned above offer not only information and community, but also volunteer opportunities.
To have the most impact, this conversation needs both the voices of people with endometriosis and the voices of physicians who are seeking better ways to care for their patients. The increase in endometriosis research funding is a victory, but it is only part of the battle in improving the diagnosis and treatment of endometriosis and improving the quality of life for millions of patients around the world.
