By Monica Lefton, Communications Manager.
Elevating Endometriosis to a Public Health Crisis: A Two-Part Blog
During a roundtable meeting on September 11 and 12, 2023, SWHR convened an interdisciplinary Endometriosis Education Working Group of health care providers, researchers, patients and patient advocates, and health care to discuss the impact of endometriosis on women’s health and address persistent gaps in diagnosis and treatment. Endometriosis is a chronic gynecologic disease in which endometrial-like lesions tend to form on the surface of pelvic organs, however, working group members repeatedly noted that these lesions can be found throughout the body, including on the bladder, intestines, diaphragm, brain, and even in the lungs – highlighting the complex and systemic nature of this disease. This complex disease requires a similarly rigorous level of education to identify and treat.
Most primary care (family medicine, pediatrics, internal medicine) and even OB/GYNs do not receive adequate training in recognizing the symptoms of endometriosis and treating the disease. Working group members were adamant that provider education on endometriosis needs to improve – stressing that this education must start early, in medical school, and be updated often, perhaps as part of larger initiatives to improve training on women’s health beyond obstetrics. Providers – from pediatrics and primary care to college, school health settings, and the emergency room – need to be trained to recognize the variable symptom profiles of endometriosis and come prepared to listen to patients. The group recommended developing a set of clinical screening questions to promote an earlier diagnosis of endometriosis, particularly for non-OB/GYN providers. Asking for a detailed family health history is also important, as is regularly discussing symptoms (even seemingly unrelated ones, such as painful sex or painful bowel movements) to help identify endometriosis or point to other related conditions, such as adenomyosis or uterine fibroids. The working group also recommended creating simplified guidelines for endometriosis care referrals to ensure patients connect with the correct specialty providers for immediate treatment and ongoing care.
After diagnosis, patients need to choose a path forward for care. Once a patient reaches a provider equipped to treat their endometriosis, that provider must be educated on the latest in care options and prepared to relay all treatment options available (non-medical, medical, surgical, or a combination), including their side effects and expected outcomes. High-quality, dedicated imaging for endometriosis can aid in the identification of deep infiltrating disease, guiding management and optimizing operative planning. Wendaline VanBuren, MD, Chair of Gynecologic Imaging at the Mayo Clinic Rochester, found that preoperative MRIs changed patient management of endometriosis in 18% of cases. Based on the additional information for the imaging scans, patients may move forward with excision surgery (cutting out visible lesions of endometriosis), or choose hormone suppression, since endometriosis is known to be stimulated by estrogen. There are additional options to manage chronic pain and fatigue and holistic care approaches, such as pain education, exercise, nutrition, stress management and cognitive behavior therapy that are often incorporated into a long-term care plan for endometriosis. With no cure for endometriosis and no evidence-based guidance on which treatment will work best for a given patient, it is not uncommon for individuals to go “from treatment to treatment to find the best combination for them” and/or to layer treatments for “a multi-modal approach,” said Sawsan (Suzie) As-Sanie, MD, MPH, Associate Professor and Director of the Endometriosis and Pelvic Pain Center in the Department of Obstetrics and Gynecology at the University of Michigan. Personalized treatment and shared decision making are foundational here because, in the end, “what the patient wants is the appropriate treatment,” noted Heather Guidone, BCPA, patient advocate and Program Director at the Center for Endometriosis Care.
Even after initial treatment, evidence-based follow-up guidelines for post-surgery or other symptom treatments are needed; 67% of women experience a relapse in symptoms and pain within five years of surgery. Speaking from personal experience, patient advocate Lindsey Peters said, “patients are confused on where to go for care or, after surgery, who to connect with.” Throughout their care journey, patients should be prepared to work with a diverse care team that might include pain management specialists, gastroenterologists, urologists, fertility specialists, or mental health professionals – all of whom need to understand endometriosis and be willing to work with their patient and each other. It may benefit patients to take advantage of patient navigator or care coordinator services in hospitals, when available. These coordinators could help patients overcome a variety of health system barriers: transportation for appointments, childcare or other caregiving support, medical translation, insurance navigation, emotional mistrust, distrust, or fear of the medical system, and explanation of treatment options and related outcomes research.
Across the endometriosis ecosystem, there is a need to build comprehensive, evidence-based guidelines for symptom identification and diagnosis, care coordination, treatment selection, and post-treatment follow-up. In the United States, the last set of endometriosis management guidelines were released by the American College of Obstetricians and Gynecologists in 2010, showcasing the years-long gap the in research and the medical communities’ understanding of endometriosis. More recent guidelines for endometriosis from the European Society of Human Reproduction and Embryology came out in 2022, which provide a helpful starting place for further updating domestic guidelines and practices.
Advancing Endometriosis Research
Deep research gaps exist for endometriosis. In 2022, $27 million (0.082%) of the National Institutes of Health (NIH) research budget supported endometriosis studies, averaging $2 per patient. For comparison, NIH spent $31.30 per diabetes patient and $130.07 per Crohn’s disease patient – all diseases that have a similar prevalence in women in the United States, at about 10% of the population. The Department of Defense’s Congressionally Directed Medical Research Programs has not maintained consistent endometriosis funding – having funded approx.$9.2 million in projects in 2018, but only one new project since then. Funding for endometriosis research could not only advance our knowledge of the disease but also improve education to reduce diagnostic delays, ensure access to care, and address medical workforce shortages that impact endometriosis patients.
Key research areas discussed during the roundtable included identifying disease pathophysiology and biomarkers for early detection and the need for a national endometriosis registry that tracks prevalence, symptoms, severity, and outcomes. Dr. As-Sanie and her team are currently researching the pathophysiology and pain linked to the disease. “We need to be able to separate out the anatomic pathology and the pain experience of endometriosis,” she said. There is also a need to study environmental impacts on endometriosis. James Segars, MD, Professor and Division Director of Reproductive Science and Women’s Health Research in the Department of Gynecology and Obstetrics at Johns Hopkins University School of Medicine, saw a case of endometriosis in a New York patient, which he believes is tied to toxin exposures incurred during the September 11 attacks. This is just one example, he expressed, of how “more can – and must – be done to advance our understanding of endometriosis.” A comprehensive national disease registry could help track disease prevalence in under-acknowledged demographics like teenagers and post-menopausal patients, and better track the natural history of disease.
Beyond simply funding bench to bedside research on endometriosis, clinical studies need to include diverse populations, mirroring those currently living with the disease. Historically, endometriosis was thought to be a disease that only affected white women, when, in reality, these data only reflect those who accessed and reported treatment. Today, gaps remain in our understanding of how endometriosis impacts women of color. To compound these gaps, many communities of color, particularly African American communities, have a generational distrust of the health care system and face barriers to care, such as spending more time traveling to receive health care than their white peers, shared Lauren Kornegay, patient advocate and executive director of Endo Black Incorporated. Ensuring trust, transparency, access to clinical trials, and fair compensation is paramount to advancing endometriosis research.
Calling for a Public Health Crisis
In summary, the opportunities to improve endometriosis care are abundant. Among these opportunities are the need for early detection resources and training; improved provider education (including in medical students) and societal awareness; increased communications about appropriate treatments; and equitable insurance coverage and reimbursement for this complex condition. Increased research funding with a focus on investigating the pathophysiology of endometriosis and its unique disease presentations, overlap with other chronic and systemic diseases, and disparities must become a national priority. How might this be achieved? The working group emphasized that endometriosis is not just a gynecologic condition, but a systemic disease that has tremendous bearing on one’s overall health. Simply put: Designate endometriosis as the public health crisis that it is.
This blog is part two of a two-part blog series summarizing takeaways from SWHR’s Endometriosis Education Working Group meeting in September 2023. To read the first part, click here.
SWHR’s Endometriosis Program is currently supported by educational sponsorship from Sumitomo Pharma. SWHR maintains independence and editorial control over program development, content, and work products.