Understanding the psychosocial impact of endometriosis-related persistent pain in Aotearoa New Zealand

Abstract

Endometriosis-related persistent pain is often understood through biomedical frameworks focused on diagnosis, lesions, surgery, and symptom management. However, persistent pain also has emotional, cognitive, social, relational, and healthcare-mediated dimensions that shape how pain is lived and made meaningful over time. This qualitative study explored the psychosocial factors, dynamics, and processes that shape the lived experience of endometriosis-related persistent pain among women in Aotearoa New Zealand. In particular, it examined how emotional distress, meaning-making, interpersonal relationships, social recognition, support, and healthcare experiences influenced the ways in which pain was understood, managed, and lived with. The study was informed by a biopsychosocial understanding of persistent pain and sensitised by feminist health perspectives on gendered pain, legitimacy, and healthcare dismissal. Thirteen women with clinically diagnosed endometriosis and endometriosis-related persistent pain participated in in-depth semi-structured interviews. Data were analysed using reflexive thematic analysis. Five themes were developed: “No amount of pain should be normal”: struggling to legitimise pain; Waiting in pain: care pathways, uncertainty, and the cost of access; Living with an unpredictable and invisible body; Carrying pain internally: distress, self-doubt, and self-compassion; and Making pain liveable: support, relief, and whole-person care. Together, these themes showed an analytic movement from pain being questioned, to pain being prolonged, socially managed, internally carried, and made more liveable. Participants’ accounts showed that persistent pain was not only endured in the body, but also negotiated through healthcare systems, relationships, social expectations, internal meaning-making, and access to support. The findings suggest that endometriosis-related persistent pain cannot be understood through symptom severity, diagnosis, or treatment history alone. Instead, it is shaped by recognition, waiting, invisibility, distress, self-trust, and the forms of care and support that help restore agency, participation, and liveability.