Exploring Endometriosis, Physical Activity and Lifestyle Impact: A COM-B Grounded Qualitative Study

Abstract

Background

Endometriosis, a condition characterised by tissue resembling the endometrium growing in areas of the body affecting 10% of women. A lifelong condition with complex treatment pathways, symptoms cause widespread pain, fatigue, and cognitive difficulties that disrupts wider lifestyle including physical activity engagement (PA), a protective health behaviour against comorbidities. Underpinned by the COM-B model, this study qualitatively explores complexities of PA engagement in those with endometriosis to further understanding of endometriosis's wider psychosocial impact and close literature gaps.

Methods

A convenience sample of 17 UK-based participants (age: 22-47, M = 33) diagnosed with endometriosis participated in semi-structured interviews. Questions were underpinned by the COM-B model of capabilities, opportunities, and motivations towards PA. Recordings were transcribed and anonymised, facilitated by Otter.AI and NVivo14 to follow thematic analysis procedures to cluster meaningful themes around barriers and facilitators.

Results

Emerged four main themes: 1) Systemic factors delaying diagnosis hindered symptom management and pulled resources and priorities away from PA; 2) Symptom's unpredictability and competing demands create PA barriers; 3) Fostering active-centric values, knowledge and access that compliments diagnosis needs facilitates PA engagement; 4) Social networks and public role models promoted PA opportunities and motivation.

Conclusions

Individual and systemic challenges were identified that disrupt PA engagement, priorities and information access pre and post diagnosis. Future research should adopt a biopsychosocial, person-centered approach to PA interventions for individuals with endometriosis, addressing condition-specific challenges and providing tailored support. These findings highlight how widely endometriosis impacts individual's lifestyle, wellbeing and identity and the serious need for further understanding and resourcing.

Key messages

• Individual and systemic barriers delay endometriosis diagnosis and symptom management which exacerbates individuals’ priorities and disrupts physical activity, lifestyle and wellbeing over lifetime.

• A need for more psychosocial research and resource development on endometriosis and the lack of condition specific activity lifestyle guidelines hindering information access and patient’s autonomy.