Women's Experiences Living With Endometriosis: An Interpretative Phenomenological Study
Blanca Ochoa-Sáenz1, Carolina E Watson2, Rebeca Gómez-Ibáñez2
1Department of Medicine, Faculty of Medicine, Universitat Autònoma de Barcelona, Cerdanyola de Vallès, Spain.
Abstract:
The aim was to explore the lived experiences of women diagnosed with endometriosis and receiving care in Spain to understand its impact across multiple areas of their lives. This qualitative study utilized a hermeneutic phenomenological approach. Data were collected between February 2023 and June 2025. Semi-structured individual interviews were conducted with 17 women and were audio recorded with the participants' consent. Interview data were transcribed verbatim and analyzed following the theoretical framework of van Manen's phenomenology of practice approach. We identified four themes: interpersonal (dis)connections: the relational impact of endometriosis; self-management and redefinition: learning to live with endometriosis; when womanhood hurts: the disruptive embodiment of endometriosis; and fragile alliances with healthcare: between hope and abandonment. Participants described how endometriosis profoundly disrupts their lives through constant pain, social invisibility, and emotional exhaustion, affecting emotional, social, professional, and bodily dimensions. Women experience endometriosis as a challenge for their identity, fertility expectations, and trust in healthcare. Participants emphasized coping strategies such as self-management, peer support, and advocacy as essential for a condition that demands personal resilience.
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