Women's Experiences Living With Endometriosis: An Interpretative Phenomenological Study

Blanca Ochoa‐Sáenz, Carolina Watson, Rebeca Gómez‐Ibáñez
Nursing & health sciences · 2026 · vol. 28(3) , pp. e70420 · doi:10.1111/nhs.70420 · PMID:42702737 · PMC13547431 · W7210283586
Qualitative OA: bronze CC0
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This qualitative study of 17 women in Spain found that endometriosis profoundly disrupts lives through pain and social invisibility, impacting identity and healthcare trust while highlighting the importance of self-management and peer support.

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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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MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

Citation neighborhood (2-hop)

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. Outer rings show 2-hop neighbours — papers reached through the immediate citers/citees. [ collapse to 1-hop ]

References (24)

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noordeloos 2009062

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License: CC0 · commercial use OK