A study on the effects of location, ethnicity and care approach on people with Endometriosis in the UK.

Abstract

Introduction

Endometriosis is a complex, multi-system inflammatory condition that severely impairs health-related quality of life (HRQoL). While existing research has documented its broad impact, detailed analysis across different sociodemographic groups remains limited. This thesis addresses this gap by investigating HRQoL disparities among people with endometriosis, focusing on gender identity, ethnic background, and occupational role, particularly within uniformed services.

Method

A mixed-methods approach was employed. Quantitative data were collected through an online survey completed by 2,055 participants, using the Endometriosis Health Profile-5 (EHP-5) and Pelvic Pain Impact Questionnaire (PPIQ) alongside demographic questions. Qualitative insights were gathered through 23 semi-structured interviews, analysed using Interpretative Phenomenological Analysis (IPA), to explore the lived experiences of navigating endometriosis.

Results

Statistical analysis revealed that South Asian and Military participants reported statistically significant HRQoL impairments. Thematic analysis identified key challenges impacting HRQoL, including invalidation of pain, mental health struggles, healthcare inaccessibility, and occupational penalties. Intersectional patterns showed that systemic racism, cisnormativity, and rigid workplace cultures compounded participants' suffering, influencing both physical and emotional health outcomes.

Conclusion/Recommendations

This thesis extends existing theories by integrating an intersectional perspective into endometriosis research, showing that the condition’s impact is not solely biomedical but profoundly sociopolitical. Findings reinforce the need for patient-centred, multidisciplinary care models that acknowledge the diverse realities of those affected. Healthcare providers must develop inclusive, culturally competent, and gender-affirming care pathways. Policy reforms are urgently needed to address systemic barriers and occupational health protections for those living with endometriosis. Future research should prioritise subgroup-specific experiences to guide the development of targeted interventions and ensure equitable support for all individuals with endometriosis.

Date of Award	24 Jul 2025
Original language	English
Awarding Institution	University of Roehampton
Supervisor	Astrid Hauge Evans (Director of Studies) & Patrick Brady (Co-Supervisor)