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

Grogan, Sarah; Turley, Emma; Cole, Jennifer

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.

Citation

Grogan, S., Turley, E., & Cole, J. (2018). 'So many women suffer in silence': a thematic analysis of women's written accounts of coping with endometriosis. Psychology and Health, 1364 - 1378. https://doi.org/10.1080/08870446.2018.1496252

• Acceptance Date: Jun 27, 2018
• Publication Date: Nov 1, 2018
• Journal: Psychology & Health
• Print ISSN: 0887-0446
• Publisher: Routledge
• Pages: 1364 - 1378
• DOI: https://doi.org/10.1080/08870446.2018.1496252
• Publisher URL: https://www.tandfonline.com/doi/full/10.1080/08870446.2018.1496252