The endometriosis diagnosis process within the National Health Service in the United Kingdom: an examination of key factors associated with psychological distress

• Endometriosis affects approximately 1.5 million women in the UK and approximately 190 million women globally • Despite calls to improve the diagnosis process, issues such as protracted diagnosis timeframes persist, which can lead to wider social and psychological issues • Findings from this study highlight how protracted endometriosis diagnosis timeframes, the associated negative impact on social life, and poor satisfaction ratings, contribute to poorer psychological wellbeing • More broadly the results highlight the need to improve care pathways for diagnosing endometriosis, inclusive of more psychological and social support. Service improvements and reduced time-to-diagnosis may help to reduce associated negative psychological and social outcomes. Endometriosis affects approximately 1.5 million women in the United Kingdom and 190 million women globally. Despite calls to improve the diagnosis process, issues such as protracted diagnosis timeframes persist, which can lead to wider social and psychological issues. This study explored links between diagnosis timeframes, the negative impact on social life, and poor satisfaction ratings with the diagnosis process in relation to psychological distress. The study surveyed 199 females diagnosed with endometriosis via the National Health Service to address two aims. The first aim analysed the role that type(s) of support received (specialist, non-specialist, or both) and time-to-diagnosis had on psychological distress. The second analysed how satisfaction with the diagnosis process, and the negative social impact caused by endometriosis were associated with psychological distress. Analysis found significantly greater psychological distress ( p = .002) among females who experienced a time-to-diagnosis of 5 years or more, compared to those diagnosed within 0-2 years and 3-5 years. There was no evidence that the type of support received was associated with psychological distress. Follow-up analysis found that lower satisfaction with the diagnosis process and greater negative social impact scores were significantly associated with greater psychological distress ( p < .001). Findings highlight how protracted endometriosis diagnosis timeframes, the associated negative impact on social life, and poor satisfaction ratings with the diagnosis process, are linked to psychological distress. More broadly, these findings highlight the need to improve care pathways for diagnosing endometriosis, inclusive of more psychological and social support.