Abstract
OBJECTIVES: Endometriosis is a chronic and progressive condition commonly associated with debilitating pain. Treatments for endometriosis pain are limited and usually invasive. Psychological interventions are a non-invasive intervention option and have proven benefits in chronic pain. Yet, psychological interventions for endometriosis pain are scant and of limited efficacy, which may be due to gaps in our understanding of endometriosis pain experiences. We sought to expand current understandings of endometriosis pain by investigating the factors that exacerbate and alleviate pain-related impact and distress, despite similar levels of pain severity. DESIGN: A mixed-methods approach was used, comprising quantitative pain data, qualitative interviews, and qualitative analysis of open-ended survey responses. METHODS: A total of 873 participants answered an online survey including pain outcomes. Sixteen participants were then purposively sampled for interview, in an iterative manner, in line with grounded theory until theoretical saturation was reached. Analysis of interview data resulted in a novel model of endometriosis pain. The model was cross-validated and refined using content analysis of 841 open-ended online survey responses regarding wider system priorities for endometriosis care. RESULTS: Our COMPASS model suggested that experiences of endometriosis-related pain and associated distress and impact were shaped by a dynamic interaction between the challenges of the gendered nature of pain, invalidation, distrust in the healthcare system, agency, sense-making, and burden. These experiences were situated within broader systemic factors of difficulty accessing care, the limitations of available treatments, and a lack of financial support. CONCLUSIONS: Our findings present a novel model of endometriosis pain. This model provides several psychosocial treatment targets that could inform future psychological and multidisciplinary interventions for endometriosis pain. Empirical validation of the model is an avenue for future research.