Psychol Health. 2018 Oct 11:1-15. doi: 10.1080/08870446.2018.1496252. [Epub ahead of print]
‘So many women suffer in silence’: a thematic analysis of women’s written accounts of coping with endometriosis.
Grogan S1, Turley E1, Cole J1.
Author information
- 1
- a Department of Psychology , Manchester Metropolitan University , Manchester , UK.
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, analyzed 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.
KEYWORDS:
endometriosis; non-adherence; pain; thematic analysis; women’s health
- PMID:
- 30306810
- DOI:
- 10.1080/08870446.2018.1496252
Dr. K’s Comments about this analysis:
Just leaving the conclusion here.
”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.”