‘So many women suffer in silence’: a thematic analysis of women’s written accounts of coping with endometriosis

Sarah Grogan, Emma Turley, Jennifer Cole
Psychology & health · 2018 · vol. 33(11) , pp. 1364–1378 · doi:10.1080/08870446.2018.1496252 · PMID:30306810 · W2883065203
article OA: gold CC0 ⤵ 41 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This study analyzed written accounts from 34 women to understand their experiences coping with endometriosis, revealing struggles with diagnosis, pain management, energy conservation, and social isolation.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 ⓘ

This qualitative study used inductive thematic analysis of open-ended responses from 34 UK women (ages 22–56) with self-reported medically diagnosed endometriosis recruited via an endometriosis charity website. Participants described long-term pain as a constant struggle that affected work and personal life, included “battling” for accurate diagnosis with limited trust in health professionals, and led to coping strategies such as self-pacing/avoiding social events to conserve energy and selectively avoiding painkillers to remain alert. The women also reported difficulty being honest about symptoms with family and friends, resulting in social isolation and feeling misunderstood. Limitations included reliance on self-reported diagnosis and an online UK charity–recruited sample, which may not represent all women’s experiences. This paper is centrally about endometriosis — it thematically analyzes women’s written accounts of coping and the impacts on daily life, relationships, and diagnosis.

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Abstract

OBJECTIVE: To understand women's experiences of coping with endometriosis, and impact on their lives. DESIGN: Women accessed an online questionnaire through a U.K.-based endometriosis charity website. METHODS: Thirty-four women, aged 22-56 years, with self-reported medically-diagnosed endometriosis, 30 of whom were White, responded to open-ended questions, analysed using inductive thematic analysis. RESULTS: Participants spoke about their lives being a constant struggle, where they tried to maintain their personal and working lives whilst dealing with long-term pain. Women had to 'battle' for an accurate diagnosis, and had limited faith in health professionals. Coping strategies included avoidance of social events to conserve energy (self-pacing), and avoiding taking painkillers to retain alertness. Women did not feel able to be honest with family and friends about their symptoms, and felt socially isolated and misunderstood. CONCLUSIONS: Implications for health professionals are discussed, including the need for earlier diagnosis and taking women's symptoms more seriously at referral; understanding the need to conserve energy in the context of long-term pain; that not taking pain medication may be an active choice to retain alertness; and that avoiding being honest with friends and family and subsequent feelings of isolation may be common experiences relevant to designing treatment programmes.

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Condition tags

mesh:D004715endometriosis

MeSH descriptors

Adaptation, Psychological Endometriosis Adult Endometriosis Female Humans Middle Aged Surveys and Questionnaires Young Adult

Citation neighborhood

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. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (31)

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