How do adolescent girls and boys perceive symptoms suggestive of endometriosis among their peers? Findings from focus group discussions in New York City

Objective

Symptoms of endometriosis, including pelvic pain, back and nerve pain, and gastrointestinal pain, often begin in adolescence. Yet, research on the experience of these debilitating symptoms among young people is scarce. Of particular concern is the influence of adolescent girls' social context. This study qualitatively examined how, among adolescents, endometriosis and symptoms suggestive of endometriosis is perceived at the family, peer/school and community/society levels.

Design

Eight focus groups were conducted; vignettes were used to elicit participants' perceptions of factors that may shape girls' experiences of endometriosis. Data were analysed using constant comparison analysis.

Participants

An ethnically diverse sample of girls and boys ages 14–18 (n=54) residing in New York City.

Results

Fifteen themes emerged and were distilled to eight cross-cutting factors that influence perceptions of endometriosis at different levels of the ecological model: distrust of community healthcare providers, societal stigma of menstruation, peer stigma of endometriosis symptoms, distrust of school healthcare providers, lack of endometriosis knowledge among peers and school personnel, inequitable gender norms, invisibility of symptoms and the stigma of teen sex among parents. Further, these factors may compound symptoms' impact on individual girl's social, educational and emotional well-being.

Conclusions

Findings underscore the importance of understanding the social environment of girls experiencing symptoms suggestive of endometriosis and educating and engaging their peers, family and school personnel to create a supportive, informed social climate. Efforts should specifically include stigma reduction campaigns targeted towards female and male adolescents.

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