'So many women suffer in silence': a thematic analysis of women's written accounts of coping with endometriosis. Issue 11 (2nd November 2018)

• Record Type: Journal Article
• Authors: Grogan, Sarah; Turley, Emma; Cole, Jennifer
• Is Part Of: Psychology & health. Volume 33:Issue 11(2018)
• Page Start: 1364
• Page End: 1378
• Publication Date: 2018-11-02
• Subjects: endometriosis -- thematic analysis -- women's health -- pain -- non-adherence; Clinical health psychology -- Periodicals; Attitude to Health -- Periodicals; Public Opinion -- Periodicals; Psychology -- Periodicals; 150
• DOI: 10.1080/08870446.2018.1496252
• Languages: English
• ISSNs: 0887-0446

Abstract

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.