Integrated care for endometriosis: a qualitative study investigating nutrition and lifestyle factors.

Introduction: Endometriosis is estimated to affect around one in 10 women in the UK and an estimated 200 million women worldwide. Despite evidence in the current literature around the benefits of using dietary and lifestyle interventions there has been limited research into incorporating these into person-centred care for the condition. Studies have supported a reduction in endometriosis pain when anti-inflammatory and anti-oestrogen dietary interventions were introduced. Also pain reduction has been reported in small studies on gluten free diets. Further studies have also identified that diets high in cruciferous vegetables, fresh fruit and antioxidants helped to reduce oestrogen, oxidative stress, and inflammatory processes. The researcher team comprised of two researchers, both diagnosed with endometriosis. So, this is a patient-led research project, devised as self-management of the condition has been important in managing both of the researchers’ symptoms. Aims: To explore the potential role for nutrition and lifestyle medicine in endometriosis as a self-management tool, and the barriers and challenges women with endometriosis face which prevent them from implementing beneficial nutrition and lifestyle changes. Methods: A qualitative methodology was used, with an anonymous online survey including open questions as the form of data collection. Snowball and purposive sampling were used to obtain participants. The inclusion criteria were women who live in the UK, 18 years or over who have diagnosed endometriosis. The data was analysed using inductive coding and thematic analysis. Results: A total of 42 participants completed the online survey. Eight subordinate themes were derived from 80 data codes and developed into four main superordinate themes: 1. Advice and support provided from healthcare professionals or nutrition professionals, 2. Diet and lifestyle changes already implemented and effects, 3. Endometriosis symptoms and 4. Barriers and motivation to change. The study found that women with diagnosed endometriosis received either no or poor-quality advice from their medical or health care professionals in relation to dietary changes. Most of the advice sought and implemented was from a variety of self-researched sources such as books, online websites and endometriosis support groups. Women had tried and reported benefits from a variety of different dietary or lifestyle interventions including, removal of gluten, increasing fruit and vegetable consumption, walking, yoga, Pilates, and meditation. There appeared to be very little or no professional support for patients with endometriosis in terms of implementing person centred nutrition or lifestyle goals. Conclusion: The existing dietary advice to women with endometriosis remains poor and participants specifically highlighted their desire for more evidence-based support with this. Identifying barriers to implementing dietary and lifestyle interventions will likely assist and facilitate the implementation of nutrition and lifestyle person-centred goals. Due to the wide variety of symptoms women with endometriosis can experience, a more individualised nutrition and lifestyle approach alongside existing care can provide a key role in improving practice in this area. More studies are needed on both nutritional and lifestyle approaches to managing endometriosis. This project has demonstrated that patient-led research has the potential to inform practice and shape research priorities.