Understanding the impact of endometriosis on women’s body image: A mixed methods study

Falconer, Laura

Abstract

Background
The physical and psychological impact of endometriosis on the individual is considerable, yet there is currently little known about how best to support those if they are negatively impacted by appearance and body image-related issues as a result of the condition. The present study aimed to investigate the impact of endometriosis on body dissatisfaction, functionality appreciation and general wellbeing outcomes, and sought to understand how we can support individuals to improve this.

Methods
Following ethics approval, a mixed methods study was conducted through use of an online survey. Patient and Public Involvement (PPI) from volunteers at Endometriosis UK helped design the study. Participants were recruited from several sources, including social media and through word-of-mouth, and were included if they were over the age of 18 and had been diagnosed with endometriosis. Participants were included from both within and outside the United Kingdom (UK). Data was collected on demographic information, such as age, gender, number of symptoms, length of time experiencing symptoms before diagnosis and length of time since diagnosis, number of body locations diagnosed with endometriosis, treatments received, number of surgeries, additional health conditions and geographical differences. Quantitative data was gathered through several standardised measures, including the Endometriosis Health Profile (EHP-30), Short Form Health Survey (SF-36), Body Image Scale (BIS), Functionality Appreciation Scale (FAS) and Self-Compassion scale (SCS-SF). Information was also gathered on support needs, and preferences on support delivery. A thematic analysis was conducted on the qualitative data and correlational analyses, multiple regression and an independent T-test conducted on the quantitative data.

Results
Data cleaning resulted in data from 128 participants (mean age = 31 years; mean length of time experiencing symptoms prior to diagnosis = 10.5 years) that underwent analysis. These participants reported a variety of different symptoms (including menstrual cramps, pelvic pain, fatigue, back pain) and treatments (e.g., painkillers, the pill, laparoscopy, heat) for the condition. Analysis of the quantitative data showed a number of significant results. First, lower emotional wellbeing, physical functionality, general health perception, self-compassion, positive self-image and control and greater feelings of powerlessness were associated with greater body dissatisfaction. Furthermore, greater emotional wellbeing, physical functionality, general health perception, self-compassion, positive self-image, control and lower feelings of powerlessness were associated with greater functionality appreciation. Finally, following a multiple regression, self-compassion was a significant predictor of body dissatisfaction and functionality appreciation. With regard to qualitative analysis, this revealed that most participants gained information on the condition from other individuals with endometriosis and through social media, but wanted support to improve their body image from trained professionals (e.g., psychologists/counsellors), with a primary focus on improving feelings of control and acceptance of the condition.

Conclusion
This data could support towards guiding policy, practice and theory, as it outlines that there is a desire for support to improve body image in those with endometriosis. The study suggested that to improve body image in those with endometriosis, therapeutic interventions focusing on improving feelings of control and acceptance may be beneficial. These could be delivered through facilitated sessions, as well as being self-led, should participants prefer to work through content this way. Health Psychologists may be well placed to support individuals with managing and improving body image-related issues through such interventions. Future research therefore would benefit from developing and evaluating interventions on body image based upon the Medical Research Council framework for development of complex interventions. These interventions could include techniques from Cognitive Behavioural Therapy, Acceptance and Commitment Therapy and Compassion Focused Therapy, tailored to those with endometriosis.

• Thesis Type: Thesis
• Deposit Date: Dec 18, 2023
• Publicly Available Date: Feb 25, 2025
• Public URL: https://uwe-repository.worktribe.com/output/11531585
• Award Date: Feb 25, 2025