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Autobiographic narratives of women with endometriosis: which phenomena permeate the delays in diagnosis?

Abstract

This article aims to understand the network of intersubjectively constructed meanings that characterize the phenomenon of endometriosis in the lives of affected women, balancing micro and macrosocial perspectives. This is a qualitative research based on the autobiographical narrative technique of sociologist Fritz Schütze, who explored the experience of 29 women with endometriosis. The analysis was performed according to the reconstructive method proposed by Schütze. Beyond the schematic structure based on indexed data, two theories emerged: structural neglect legitimized by gender issues and barriers and shortcuts in the care network. The narratives reveal the institutionalization of gender issues in health services as a reflection of relationships embedded in the social structure. Neglect, psychiatrization of female suffering, centrality of actions in reproductive function and early medicalization of the female body were social phenomena identified in the narratives. These structural aspects, legitimized by cultural violence, are symbiotically related to lapses in the care network. Coping with this phenomenon demands more than the reorganization of care lines according to the integrality paradigm, although it emerges as a possibility. Understanding the gender-related microstructures that underlie social arrangements and care organization, producing institutional violence and multiple sufferings, is crucial.

Keywords:
endometriosis; late diagnosis; narrative; Sociology; Public Health

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