Life Disruptions, Symptoms Suggestive of Endometriosis, and Anticipated Stigma Among College Students in the United States

Abstract

Background: Endometriosis is a chronic gynecological condition impacting 1 in 10 women of reproductive age. Research with adult women documents high levels of disruptions in academic, professional, family, and social lives due to pain. Less research has been conducted with college-aged populations. Although stigma has been noted as a key factor in contributing to diagnostic delay, little research has focused on examining stigma, endometriosis symptoms, and disruptions. This study aims at documenting the frequency of social, academic, and work disruptions experienced by college-aged women due to symptoms suggestive of endometriosis and at examining the relationship between disruptions and anticipated stigma. Methods: An online survey was conducted in April 2019 among a nationally drawn sample ( N = 468) of undergraduate women to assess symptoms suggestive of endometriosis, disruptions to daily life, and stigma experiences. Results: High levels of life disruptions due to symptoms suggestive of endometriosis were documented (88% any disruption, 82.7% social, 58.8% academic, and 34.4% work). Adjusted analysis (accounting for demographics and symptoms) showed that any disruptions, social disruptions, academic disruptions, or work disruptions were significantly associated with a higher mean anticipated stigma score ( β = 0.37, 95% confidence interval [CI]: 0.15–0.59; β = 0.32, 95% CI: 0.13–0.51; β = 0.32, 95% CI: 0.17–0.46; β = 0.55, 95% CI: 0.23–0.54; respectively). Conclusions: Many young women experience disruptions that affect their academic, work, and social lives. These disruptions due to symptoms suggestive of endometriosis also impact stigma experiences. More interventions tailored to address stigma and minimize disruptions are needed in public health.

Stigma and social support and their impact on quality of life and self-esteem among women with endometriosis in Latin-America and the Caribbean

“…Our findings identified high levels of endo-stigma in a sample of cisgender women from different Latin American and Caribbean countries, which is consonant with the existing research acknowledging stigma as a key psychosocial variable impacting the diagnosis and treatment of endometriosis in other cultural contexts [10,14]. Moreover, our findings seem to support and expand previous research by providing much needed quantitative evidence of what previous qualitative literature had suggested, namely, that endo-stigma might be linked to worse endometriosis symptomatology and poor QoL [12].…”

“…The available studies on endo-stigma have consistently found that it has a detrimental impact on people living with endometriosis by delaying diagnosis and damaging interpersonal relationships among families' members, intimate partners, and healthcare personnel [10,12,13]. Recent research found the anticipation of endo-stigma, due to the disruption of endometriosis symptoms, to be highly prevalent among women living with endometriosis in the US [14]. Furthermore, anticipated endo-stigma was found to be even higher among those born outside the continental US and with other marginalized intersecting identities (i.e., immigrants, sexual and gender minorities and Black and Latinas).…”

“…Furthermore, anticipated endo-stigma was found to be even higher among those born outside the continental US and with other marginalized intersecting identities (i.e., immigrants, sexual and gender minorities and Black and Latinas). However, despite these recent findings, research on endo-stigma continues to be an under-studied topic with only a few published qualitative studies and one quantitative study that the authors are aware of to date [10,[12][13][14]. Thus, there is an urgent need to better understand the role of endo-stigma in the experience of endometriosis worldwide, but especially among underrepresented and historically excluded communities and world regions such as Latin America and the Caribbean.…”

Endometriosis on campus: How students manage their pain and academics.

“…While multiple studies center the experiences of students with disabilities in higher education in both the U.S. and non-U.S. contexts (Bolt et al, 2011; Gibson, 2012; Healey et al, 2006; Sukhai & Mohler, 2016a), there is limited research on the experiences of college students living with chronic illness on U.S. college campuses (Herts et al, 2014; Perfect et al, 2017; Royster & Marshall, 2008; Spencer et al, 2018). This is also the case for college students with endometriosis (Fagervold et al, 2009; Gilmour et al, 2008; Gupta et al, 2021; Missmer et al, 2021).…”

“…. This is also the case for college students with endometriosis (Fagervold et al, 2009;Gilmour et al, 2008;Gupta et al, 2021;Missmer et al, 2021).…”