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

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.

Healthcare Consumption and Cost Estimates Concerning Swedish Women with Endometriosis

“…A possible explanation for our results is that the older women might have developed coping mechanisms over time that could decrease the impact of the symptoms. This has also been suggested earlier [19,20].…”

Contribution of Chronic Fatigue to Psychosocial Status and Quality of Life in Spanish Women Diagnosed with Endometriosis

“…Previous studies have stated that women with endometriosis frequently report the presence of chronic fatigue [46], with authors defending the effect of endometriosis on its generation, independently from other symptoms of the disease [11]. Our study shows that 85.3% of the patients enrolled have moderate to severe fatigue.…”

“…Finally, we have no information about medication taken by the women during the study, although all participants reported to be adhering to the prescribed medical treatment. However, it is possible that fatigue in endometriosis could be partially attributed to side effects from medication [46]. In addition, contraceptive hormonal therapy is usually prescribed to many women with endometriosis, and its use has been previously associated with different depression symptoms [81].…”

Living with endometriosis: a phenomenological study

“…Though often seen as a challenge to be tackled positively (Moradi et al, 2014), in our study the delay in diagnosis was instead a critical factor in worsening the participants' quality of life (Nnoaham et al, 2011). Our sample has not overtly expressed any disappointment in the health workers (Grogan et al, 2018)-neither for the delay in diagnosis nor for the feeling of being understood. The cultural values of our sample (Simeone et al, 2016) may play a significant part in this.…”

“…Chronic and recurrent pain, dysmenorrhoea, non-menstrual pelvic pain, dyspareunia and dyschezia are the main symptoms associated with the disease; these symptoms occur in about 80% of cases. Furthermore, endometriosis can be associated with nausea, diarrhoea, sleep disturbances and fatigue (DiVasta et al, 2018;Moradi et al, 2014), affecting the quality of life of the women who suffer from it (Bourdel et al, 2015;Chauvet et al, 2017;Facchin et al, 2015;Grogan et al, 2018). Often the diagnosis of endometriosis is late, due to the variability of the lesion and the range of symptoms that can occur in addition to the common link with pelvic pain during normal menstruation (Denny & Mann, 2008).…”