Written by Katie Wiedeman, MSW candidate, The Brown School; practicum student at the Center for Community Health Partnership & Research
Around 11% of women in the United States between the ages of 15 and 44 have endometriosis, about 6.5 million people. Symptoms can be incredibly severe, resulting in poor quality of life, absenteeism at work and school, mental health challenges, and difficulties in interpersonal relationships. While this disease is incredibly common, there is a significant diagnostic gap between the time a patient experiences symptoms and the time that they receive the diagnosis – an average of 10 years. During this diagnostic gap, people continue to suffer without treatment and experience poor quality of life without understanding why or feeling that their pain is validated. One of the primary reasons for such delay is due to social stigma and stereotypes related to endometriosis and menstruation.
Social constructs and stigma about menstruation inhibit people’s ability to speak up about their symptoms and receive an appropriate diagnosis. The experience of menstruation is expected to be hidden and to not affect any aspect of the person’s functioning. People who are on their period should not complain about it and continue with their lives ‘as normal.’ This social construction of menstruation results in a hesitancy to discuss periods, even with medical providers, because patients are concerned about being perceived as difficult. Many people with endometriosis also reported having their symptoms devalued by medical professionals, including the suggestion that their pain is purely driven by psychological factors. Therefore, these issues of stigmatization have a substantial impact on the diagnostic gap that prevents people from accessing needed support.
The influence of stigma and stereotypes creates more barriers for certain groups as well. Although transgender and non-binary people do have endometriosis, the diagnosis is generally framed in terms of cisgender women. Statistics regarding the prevalence of endometriosis among these groups are largely missing too, thus adding difficulties to their experience of receiving a diagnosis from a medical provider. Additionally, endometriosis is often studied solely among White populations and data about the prevalence for people of other races or ethnicities is severely lacking. This health disparity is due to racial biases that continue to play a role in medical education and misdiagnosing. This lack of understanding calls for further action to decrease stigma, raise awareness of endometriosis, and address relevant barriers to treatment.
Moving forward, more awareness of endometriosis is essential to decrease the stigma that results in too many individuals suffering from diagnostic delays, poor relationships with healthcare providers, and feelings of anxiety and depression that are often correlated with delayed diagnosis. For more information on endometriosis advocacy, Nancy’s Nook and the Endometriosis Foundation of America both have a wealth of educational resources and opportunities to get involved, as well as resources specifically for people of color and the LGBTQ+ community. Learning more about endometriosis and how it affects people is a substantial step forward in reducing stigma. In turn, raising awareness of endometriosis will deconstruct the stereotypes that reinforce health inequities and contribute to the poor physical, emotional, and social experiences of those with endometriosis.