Exploring the lived experience of adenomyosis and reviewing experiences of endometriosis during COVID-19.

This thesis reviews and synthesises experiences of endometriosis during COVID-19 and explores the lived experience of adenomyosis. Chapter one is a systematic literature review of eleven studies which detail psychological impact and coping strategies of individuals experiencing endometriosis during the COVID-19 pandemic. Stress, anxiety and low mood were experienced as negative psychological impacts of COVID-19, while positively increased self-awareness developed as a result of quarantine. Findings across studies were varied yet individuals were found to face challenges to their practiced coping strategies of seeking social support, engaging in physical exercise or maintaining patient-clinician relationships during COVID-19. During future pandemics endometriosis specific health information, stress relief, social support groups and continued access to healthcare should be considered. A need to reconsider workplace adaptations for persons living with endometriosis was highlighted.

Chapter two is an empirical study which explored the experiences of nine females diagnosed with adenomyosis. Interpretative Phenomenological Analysis (IPA) was used to analyse semi-structured interviews. Three Group Experiential Themes emerged: Feeling dismissed, invalidated, and lost while seeking support; Ongoing struggles with symptomology and identity and Feeling misunderstood and isolated. Individuals with adenomyosis are experiencing physical, social and psychological challenges due to feeling dismissed, invalidated, misunderstood and lacking support. Clinical implications for gynaecological care are outlined. As this was the first study of its kind, further research is necessary to increase understanding of the challenges which accompany life with adenomyosis and to better inform individualized service provisions.

Chapter three is an executive summary which has been written for individuals who are experiencing unusual menstrual symptoms or have recently been diagnosed with adenomyosis in effort to improve accessibility of information.