Email this article "It burns me from the inside like an open wound": A qualitative study of women’s illness experience with endometriosis.
Abstract
Endometriosis profoundly impacts public health, quality of life, and economic stability, causing severe pain, fatigue, and mental health issues, and impeding work and sexual health. Despite extensive research, diagnostic delays and treatment inefficacies persist, impacting quality of life and economic stability. This study aims to explore the personal experiences of women with endometriosis, focusing on symptomatology, treatment effectiveness, and the role of social support, using a qualitative methodology to enrich current understanding and guide future healthcare strategies. Interviews with nineteen women revealed diagnostic challenges, including delays and normalization of pain, unsatisfactory treatment outcomes, and substantial impacts on daily life and psychological well-being. The study identified a need for improved medical empathy, awareness, and support systems. The findings underscore the complexity of managing endometriosis. Women experienced isolation due to disbelief and lack of support, impacting familial, friendly, and intimate relationships. Positive healthcare experiences were characterized by empathy and active listening from professionals. However, the cost of treatments and hospitalizations often hindered access to medical care. Social support networks, including online communities, were crucial for comfort and infor-mation sharing. The study contributes to a deeper understanding of the profound impact of endometriosis on women's lives. It underscores the need for a multidisciplinary approach to treatment and prevention, including raising public awareness and early diagnosis. The research calls for destigmatizing menstrual education and improving healthcare literacy to challenge cultural norms around menstrual pain and endometriosis.
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