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For this Endometriosis Awareness Month (March), Associate Professor Jhumka Gupta shares how endometriosis pain affects all areas of life and innovative solutions for combating stigma surrounding endometriosis-related chronic pain.
Endometriosis is a condition in which tissue similar to the inside of the uterus grows outside of the uterus. This disease can cause severe and sometimes debilitating pain, and affects more than 11% of women of reproductive age (15-44) in the U.S. In addition to the physical pain experienced by women with endometriosis, the stigma of talking about menstrual health and pelvic pain can isolate individuals from social support. Navigating disruptions in school, work, and social spheres due to symptoms can also be isolating. The stigma and disruptions can have negative effects on mental health.
Jhumka Gupta, associate professor in the Department of Global and Community Health within Mason’s College of Public Health, is leading a three-year intervention to reduce societal stigma encountered by young women with chronic pelvic pain or endometriosis. With a grant from the Office on Women’s Health within the U.S. Department of Health and Human Services Gupta will investigate how SurrEndo, a game-based intervention that Gupta and her team developed, impacts friends and family’s ability to support those in their lives who live with endometriosis.
During this Endometriosis Awareness Month, she offers insight into the realities of living with endometriosis-related chronic pain and shares how people can support loved ones affected by this condition.
What causes endometriosis and what are the consequences of endometriosis-related pain?
With endometriosis, tissue that is like that of the interior of the uterus thrives outside in locations in the body it is not meant to be. Most commonly, endometriosis can be found on the ovaries or fallopian tubes, and it can appear in other organs outside of the pelvis.
According to the Endometriosis Foundation of America, as endometriosis grows, it can cause inflammation, adhesions, scarring, and internal bleeding. As endometriosis grows, it causes inflammation, which can lead to adhesions, scarring, internal bleeding, bowel or urinary dysfunction, constipation, painful intercourse, or infertility. Endometriosis can cause various symptoms including pelvic pain, bowel or urinary dysfunction, nerve pain, leg and hip pain, nausea, and extreme fatigue. The development of scar tissue may make it more difficult to become pregnant. In addition to physical pain, endometriosis often leads to disruptions in an individual’s daily functioning, causing them to miss school, work, or social events, all of which can be detrimental to their mental health.
Why is there a stigma associated with endometriosis?
There is a general stigma that surrounds menstruation and pelvic pain, and endometriosis is not exempt. It is a topic people shy away from discussing and for this reason there are few resources available with tools on how to navigate life with this disease. The symptoms can begin as early as adolescence, but in part because of the social stigma, diagnoses and treatments are delayed for years, leaving people to manage this disease alone.
Is endometriosis a health equity issue?
Endometriosis as a whole is an underfunded health condition. Research and interventions specific to Black women and girls and other populations of color are even more scarce despite longer diagnostic delays and well-documented broader research on medical racism and health inequities.
What is game-based intervention and how does it relate to endometriosis care?
Game-based intervention, or gamification, uses video gaming or application-based entertainment to help promote behaviors or change attitudes. With gameplay, family and peers of someone with endometriosis role-play as if they have the disease. When playing SurrEndo, they will see how endometriosis impacts their lives as they experience disruptions in school, with their friends, dating, and at clinics. Adolescents can also practice advocating for themselves and how to seek support. The goal is to reduce stigma, teach people how to offer more support, and improve the mental health of those affected by endometriosis. SurrEndo specifically focuses on Black and Latina adolescents and their communities.
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Jhumka Gupta, ScD, is an expert on endometriosis-related stigma and the mental and health implications of endometriosis pain. Her most recent study will be guided by community partnerships, including EndoBlack, Inc., a Black-women-led organization advocating for African American women and women of color affected by endometriosis.
In addition, Gupta research applies a social epidemiology framework towards advancing the science of gender-based violence against women and girls (e.g. intimate partner violence, sex trafficking). Specifically, she investigates the mental and reproductive health implications of gender-based violence and conducts intervention studies aimed at reducing violence against women, focusing primarily on vulnerable populations.
To speak to Gupta, contact Michelle Thompson at 703-993-3485 or mthomp7@gmu.edu.
About Mason
George Mason University, Virginia’s largest public research university, enrolls 39,000 students from 130 countries and all 50 states. Located near Washington, D.C., Mason has grown rapidly over the last half-century and is recognized for its innovation and entrepreneurship, remarkable diversity, and commitment to accessibility. In 2022, Mason celebrates 50 years as an independent institution. Learn more at http://www.gmu.edu.
About College of Public Health at George Mason University
The College of Public Health at George Mason University is the first and only College of Public Health in Virginia combining public health transdisciplinary research, education, and practice in the Commonwealth as a national exemplar. The College enrolls more than 1,900 undergraduate and 1,300 graduate students in our nationally recognized programs, including six undergraduate degrees, eight master’s degrees, five doctoral degrees, and six professional certificate programs. The College is comprised of the School of Nursing and the Departments of Global and Community Health, Health Administration and Policy, Nutrition and Food Studies, and Social Work.