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.
Endometriosis is a condition which affects around 1–2% of women worldwide and has profound effects on their everyday lives. Previous research has tended to focus on physical symptoms (such as chronic pain); how women manage changes to their identity and relationships as a result of endometriosis has received less attention. This paper discusses qualitative data examining how women negotiate changes to identity while living with endometriosis, in a social context where women are expected to minimise their symptoms and conform to feminine role expectations. We conducted thematic analysis of 34 replies to an online survey seeking qualitative text responses. The women identified disruptions to personal identity as a result of living with endometriosis. They talked about not feeling like themselves (Theme 1) and about reactions from medical and social connections prompting feelings that they were going “mad” (Theme 2). Participants also expressed feeling as though they were a burden to loved ones (Theme 3), which often resulted in self-silencing (Theme 4). Findings are discussed in the context of Western expectations of women’s roles in social relationships and suggest that professionals who support women with endometriosis should be aware of strategies such as self-silencing which may reduce effective self-care.
Traditionally, psychologists have researched bondage and discipline, dominance and submission, and sadism and masochism (BDSM) and its participants from an external perspective, seeing it as pathology. However, there is now a growing body of research aiming to challenge this perspective. This article examines some of the ways BDSM has been reconceptualised by researchers who reject the pathological focus, distinguishing between transgressive and coercive sexualities. We focus on the lived experience of BDSM participation to further illuminate these sexual practices. A descriptive phenomenological analysis of four interview transcripts was employed, with the purpose of producing a general structural experience of BDSM participation, which aims to further understanding of this complex phenomenon. The essential structures of the BDSM experience are discussed in terms of authentic fantasy, rejection of social norms and non-sexual positive outcomes.
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