Self-managed dietary changes and functional gut symptoms in endometriosis: A qualitative interview study

OBJECTIVE: Endometriosis is a chronic gynaecological condition, often causing gastrointestinal symptoms and misdiagnosed as irritable bowel syndrome (IBS). Endometriosis guidelines do not formally endorse dietary changes and little is known about how they are self-managed. The objective of this study is to understand nutritional practices and management of gut symptoms in people with endometriosis. STUDY DESIGN: Participants were recruited as part of a larger survey study via endometriosis support groups on social media. Eligibility criteria were: a self-reported physician-led diagnosis of endometriosis, over 18 years old and residing in the United Kingdom (UK). Semi-structured interviews were undertaken virtually via Zoom using a predefined interview guide. All interviews were transcribed and analysed using thematic analysis. RESULTS: 10 people with endometriosis were interviewed. All had made individual dietary changes to manage their gut-related endometriosis symptoms. Dietary changes were made based on advice from social media support, books, websites or professionals other than dietitians. Changes included the restriction and exclusion of multiple essential food groups, including dairy, grains (primarily gluten), vegetables, fruits, and animal products. These changes impacted participants’ weight, nutritional status and relationship with food. Four strong themes were identified: 1) impact of pain 2) severe and unpredictable gut symptoms 3) dietary changes and their impact 4) seeking support for dietetic intervention. A common thread underlying and linking these four main themes was the feeling of being dismissed, care being delayed and lack of support. Overall the long delay waiting for a diagnosis, surgery and, at times, the re-occurrence of symptoms post-surgery led to unsupported trial and error with modifiable lifestyle factors, including diet. CONCLUSION: Overall, participants demonstrated some patterns of restrictive eating behaviour and wanted more professional support to help manage their endometriosis-related gut symptoms. This highlights the need for dietitians to be involved in endometriosis care to help alleviate gut symptoms, whilst ensuring nutritional adequacy and offering weight management support where required