Exploring the delays to diagnosis of endometriosis in the United Kingdom: a qualitative study

Problem

In the United Kingdom, the average time to diagnosis of endometriosis, a common gynaecological condition, is 7.5 years. A delayed diagnosis of endometriosis has significant implications on the individual, including physical, emotional and future fertility. The aim of this qualitative doctoral study was to explore, in two phases, the reasons for the delay to diagnosis of endometriosis from the perspectives of both patients and healthcare professionals. This is the first known grounded theory study to explore the delays to diagnosis of endometriosis.

Approach

In phase 1, fifteen women with confirmed endometriosis participated in individual, semi-structured interviews, and a conceptual description was generated using constructivist grounded theory. The findings from phase 1 informed the design of phase 2, where focus groups with fifteen healthcare professionals were conducted to explore delays to diagnosis of endometriosis. The data were analysed using reflexive thematic analysis.

Findings

The analysis resulted in a novel, substantive theory; this describes how the main concern of women with undiagnosed endometriosis is coping with a fracturing life, which they address through a process of making sense. The way in which a woman seeks to make sense depends upon the context of refusal, disbelief or belief arising from her interactions with others. Across each context, the grounded theory identifies how women’s individual experiences influence health-seeking behaviours and the subsequent delays to diagnosis. In phase two, three main themes evolved: (1) endometriosis is peppered with discrimination, (2) invisible women and the invisible line for referral, and (3) visibility in a context of belief: rendering the woman visible. A key finding that connected both phases was the way in which clinicians rendered women invisible and how women recognised and responded to this.

Consequences

This study provides a unique understanding of the health-seeking behaviours of women with undiagnosed endometriosis and develops a multivariate theory to explain the delays to diagnosis. This original contribution can be used to alleviate structural discrimination and encourage collaboration within and among professional bodies and patient groups to facilitate referral and diagnosis. It is also hoped the findings will be used to develop a non-invasive tool that can be used in primary care to facilitate diagnosis and referral.