By Rachel Troy, Communications and Design Intern
On May 19, 2023, the Society for Women’s Health Research (SWHR) hosted the “Emerging Topics in Women’s Health: A Focus on Uterine Health” symposium, to kick off the Virginia Commonwealth University’s (VCU) “Health of Women 2023” conference. Panelists presented developments in research and treatments, and discussed ways in which researchers, clinicians, and policy makers can collaborate to address disparities in uterine health.
Approximately 1 in 10 women of reproductive age in the United States have endometriosis, a chronic condition where uterine tissue grows outside the uterus, causing symptoms such as abnormal menstruation, pelvic pain, fatigue, and fertility challenges. Despite the prevalence of endometriosis and its impact on women’s quality of life, the disease – much like other chronic illnesses – is still widely stigmatized, and the weight of such stigma on those experiencing symptoms is “rarely explicitly examined in the literature” said Jhumka Gupta, ScD, MPH, Associate Professor of Global and Community Health at George Mason University.
Dr. Gupta addressed this knowledge gap in her research on undergraduate students ages 18-25 to learn how much endometriosis disrupts life. She found that participants were most concerned about the effect of stigma on their social, and then academic, lives, and that women from more marginalized populations – Black and Latina, sexual minorities, those born outside the U.S. – anticipated facing more stigma for their symptoms than their less marginalized counterparts. “We need more public health and social interventions to make the social climate more friendly for patients with endometriosis,” she concluded.
Like endometriosis, uterine fibroids (tumors which grow on the walls of the uterus) can cause gynecologic dysfunction, pain, and fertility challenges. An estimated 15 million women of reproductive age in the United States experience fibroids symptoms severe enough to require treatment. In addition to individual medical costs and effects on quality of life, the annual health care system costs of fibroids totals to $34 billion dollars, shared Ayman Al-Hendy, MD, PhD, a gynecologist and researcher at The University of Chicago.
Fibroids are most often treated with hysterectomy (removal of the uterus), but “this surgery should not be our number one choice” because it puts patients at higher risk of long-term negative health outcomes such as increased risk of hypertension, diabetes, cardiac issues, and dementia, said Dr. Al-Hendy in his remarks. Less invasive alternatives to surgery include radiological intervention and medical therapy, which can be hormonal or non-hormonal through vitamin D or epigallocatechin gallate (ECGC) supplements.
Dr. Al-Hendy emphasized that many of the risk factors for fibroid development, such as environmental pollution, chronic stress, altered microbiome, and nutritional deficiencies, are rooted in racism and discrimination. “I think injustice caused it, but science can help treat it” he said with regards to racial disparities among those with uterine fibroids. After all, “uterine fibroids disproportionately affect black women,” added Tanika Gray Valbrun, content producer for CNN and founder of The White Dress Project, a nonprofit organization dedicated to awareness and education surrounding fibroids. An estimated 80% of Black women compared to 70% of white women will have fibroids by age 50, according to John Hopkins.
Valburn emphasizes the role of patient voices in their own health care journey as well as partnering with researchers and clinicians to further research and eliminate disparities in uterine health. “Patient advocates can help ensure that research and development efforts are inclusive and consider the needs of all patients, including those from marginalized and underrepresented communities,” she said. “You are the CEO of your own body, and your physicians are on your personal board of directors for your health.
In addition to partnering with patient advocates and listening to their needs, scientists and clinicians can improve uterine health outcomes by informing policy, explained Lindsey Horan, MA, Chief Advocacy Officer at SWHR. “Collaboration between policymakers and scientists is needed to create policies that are both practical and driven by evidence,” she said, “and there is high bipartisan support for basic research.” During the symposium, Horan discussed ways in which scientists can become involved in the policy making process. Her tips for scientists, researchers, and clinicians:
- Communicate directly with policymakers. Try reaching them through town hall events, emails, phone calls, events, and social media.
- Share scientific findings. Keep policymakers informed of your research with the help of media engagement, policy briefs, scientific publications, and conference appearances.
- Advocate for legislature specifically dedicated to furthering uterine health outcomes, such as the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act and the Endometriosis CARE Act.
- Apply for funding to diversify clinical research geared towards treating uterine health conditions through the federal budgeting and appropriations process.
Additional discussion between panelists at the symposium further highlighted a need to address social determinants as they pertain to uterine health. Current developments within prevention and treatment of endometriosis and uterine fibroids were also covered. Watch the full event on YouTube to learn more about the intersection between research, clinical developments, patient advocacy, and policy as it pertains to uterine health.
Learn More About SWHR’s Uterine Health Work and Resources: