I have endometriosis. Welcome to my world: Women’s experiences of living with endometriosis and the delay in diagnosis. A narrative analysis.

Problem

Endometriosis is a common gynaecological disorder in which endometrial-like tissue that normally lines the uterus is found outside of the uterus triggering local inflammation. Endometriosis commonly causes chronic pelvic pain, dysmenorrhea, deep dyspareunia, and fatigue in addition to psycho-social difficulties. Despite the prevalence of endometriosis in the UK, it currently takes women an average of 8 years from their first presentation, to receive a diagnosis. As part of my third-year medical school curriculum, I sought to explore the experiences of women diagnosed with endometriosis particularly during their journey to diagnosis. A narrative analysis of three online blogs was conducted to understand why women share their stories of living with endometriosis and what practitioners can learn from these stories regarding: a) the social and psychological impact of endometriosis and b) the effect of struggling to reach an endometriosis diagnosis from the patient’s perspective.

Approach

Preliminary google searches identified that online patient narratives were often told through blogs as blogging has become an increasingly popular means of expression during illness. Three online blog entries were analysed in this study. These blogs were identified through google searches, qualified using Labov’s model of narrative structure, and subsequently content-assessed against specific inclusion and exclusion criteria. These criteria helped to ensure that the included narratives were unique first-person patient narratives authored by women diagnosed with endometriosis and living in the UK. Of the initial 101 search results, 8 blog entries were eligible to be included in this study, and 3 narratives were chosen to be analysed in sufficient depth. The focus of the narrative analysis was to explore the purpose of each woman’s narrative as well as examine some of the linguistic features of the narratives and the intention they serve.

Findings

Upon analysis, it was determined that each woman had chosen to share her narrative to either raise awareness or obtain catharsis and make sense of her diagnosis. Examining both the style and content of the narratives allowed for three primary conclusions to be drawn: firstly, living with endometriosis can cause women high levels of emotional stress; secondly, not having a diagnosis can greatly exacerbate this stress; and lastly, there is a culture of normalisation of chronic pelvic pain in women leading to many women being viewed and treated as ‘unlucky’ rather than ‘unwell’ by healthcare providers.

Consequences

Endometriosis can profoundly affect a woman’s life physically, emotionally, and socially. The present study highlights that remaining undiagnosed can cause further stress and impact a woman’s self-identity. The implications for healthcare professionals are discussed including the use of narrative analysis to foster patient-centeredness, avoiding a normalisation of severe menstrual pain in women to promote earlier investigation, and encouraging the use of non-stigmatising language and phrases in general practice.