‘Listen to women as if they were your most cherished person’: Australian women’s perspectives on living with the pain of endometriosis: A mixed-methods study

Abstract

This mixed-methods study used an online cross-sectional survey to explore perspectives of 533 adult Australian women living with endometriosis pain, and their relationship with biopsychosocial factors. Four themes were constructed: The primary theme, ‘Stigma and change’ reflected women’s experience of dismissal, and the wish to reverse the narrative of pain as normal. Some women emphasised self-education and self-advocacy to affect change, reflecting the theme ‘self-empowerment’. Participants described the ‘debilitating impact’ of endometriosis and the enduring difficulty of ‘inadequate healthcare’, reflecting themes three and four. Analysis indicated type of social support may impact perceived outcomes for endometriosis. Hierarchical regression analyses indicated too few significant relationships between biopsychosocial factors and themes to indicate meaningful patterns without risk of common method variance. Future research should explore the influence of social support and interventions which develop participant autonomy and practitioner competence and knowledge, using disease-specific measures over time.