“So many women suffer in silence”: A thematic analysis of women’s written accounts of coping with endometriosis

Grogan, S ORCID: https://orcid.org/0000-0002-7510-765X, Turley, Emma ORCID: https://orcid.org/0000-0003-2563-6622 and Cole, Jenny ORCID: https://orcid.org/0000-0002-3054-9438 (2018) “So many women suffer in silence”: A thematic analysis of women’s written accounts of coping with endometriosis. Psychology and Health, 33 (11). pp. 1364-1378. ISSN 0887-0446

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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 UK-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.