The lived experiences of endometriosis in adolescence—A critical hermeneutic perspective

Abstract

Background: Endometriosis is a condition that worldwide affects 10% of all women of childbearing age. Despite the large prevalence, it takes 4–11 years from the first onset of symptoms until the time of diagnosis, and the majority experience symptoms debut in adolescence. Endometriosis affects women's lives both physically, psychologically, socially and a lack of recognition from society causes the pain the women experience to be neglected, hidden and normalised. Preventative measures targeting endometriosis in adolescence are limited and there is a need to change the way these symptoms are viewed and affected by society at large. Aim: The aim of this qualitative study was to explore the lived experiences of endometriosis in adolescence and the social reactions impact on the illness experience and quality of life. Method: With a critical hermeneutic approach, individual interviews were conducted with women diagnosed with endometriosis. The analysis and interpretation were conducted inspired by Pedersen and Dreyer's (2018) method which is based on Ricoeur's critical theory. Results: The structural analysis shows that women experience a struggle for recognition of symptoms from their immediate surroundings including family, friends, schools and health professionals, as symptoms considered linked to menstruation are deemed to be normal for women to experience. The women's narratives are characterised into a before and after diagnosis. Therefore, the diagnosis is found to be important for the meaning that the women attach to their experiences in adolescence. Conclusion: Social experiences have a substantial impact on women's illness experience and quality of life and affect how women perceive themselves and their symptoms. Through interventions at the social level, it might be possible to change the existing societal discourses surrounding women's menstruation pain to raise the awareness of endometriosis.