What's the delay? A qualitative study of women's experiences of reaching a diagnosis of endometriosis

Abstract

Objective: To investigate the reasons women experience delays in the diagnosis of endometriosis and the impact of this.

Design: A qualitative interview-based study of 32 women, 28 of whom were subsequently diagnosed with endometriosis.

Setting: Southeast England.

Patient(s): Women attending a pelvic pain clinic.

Intervention(s): Semistructured interviews.

Main outcome measure(s): Women's reported experiences of being diagnosed with endometriosis.

Result(s): Delays in the diagnosis of endometriosis occur at an individual patient level and a medical level, as both women and family doctors normalize symptoms, symptoms are suppressed through hormones, and nondiscriminatory investigations are relied upon. Women benefited from a diagnosis, because it provided a language in which to discuss their condition, offered possible management strategies to control symptoms, and provided reassurance that symptoms were not due to cancer. Diagnosis also sanctioned women's access to social support and legitimized absences from social and work obligations.

Conclusion(s): Although recent guidelines for the management of chronic pelvic pain suggest that diagnostic laparoscopy may be considered a secondary investigation after the failure of therapeutic interventions, the present study highlights the importance of an early diagnosis for women who suffer at physical, emotional, and social levels when they remain undiagnosed.