Living with endometriosis: Women’s experiences of everyday occupations, work participation and occupational imbalance: A qualitative phenomenological study

Melanie Holm, Maria Ottesen, Birthe Tranbjerg, Line Nørgaard Remmen
In: British Journal of Occupational Therapy · 2026 · doi:10.1177/03080226261490816 · W7214987654
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A qualitative phenomenological study of four women with endometriosis reveals that symptom management dominates daily life, creating occupational imbalance and marginalization as individuals struggle to sustain work participation amid stigma and bodily unpredictability.

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Abstract

Introduction: Endometriosis is a chronic inflammatory condition affecting around 10% of women worldwide and is associated with persistent pain, fatigue, and reduced quality of life. Limited knowledge exists about how women experience and manage everyday occupations and work participation while living with endometriosis. Method: A qualitative study informed by descriptive phenomenology was conducted with four women aged 30–50 years with endometriosis. Individual, unstructured phenomenological interviews were analysed using Systematic Text Condensation, a descriptive, cross-case method grounded in phenomenology. Results: Participants described how symptom management became a dominant and time-consuming aspect of everyday life, requiring continuous planning around pain, fatigue, and bodily unpredictability. Work was prioritised and closely linked to identity, but sustaining employment relied on medication, flexibility, and recurrent sick leave, and often at the expense of rest and leisure. Stigma, symptom invisibility, and limited understanding across workplace and social contexts constrained participation and reinforced uncertainty and self-management. Conclusion: Endometriosis reorganises everyday life around symptom management and efforts to sustain work participation, contributing to occupational imbalance and marginalisation. This study adds occupational insight into how women negotiate participation and balance while living with a chronic, invisible condition, highlighting the need for occupational-centred approaches supporting sustainable participation and occupational balance.

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