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.
Disclosure statement
No potential conflict of interest was reported by the authors.