Kumar Komal, Narvekar Nitish N, Maslin Kate
Epsom and St Helier University Hospitals NHS Trust, Dorking Rd, Epsom KT18 7EG, UK.
School of Nursing and Midwifery, University of Plymouth, Plymouth PL4 8AA, Devon, UK.
Eur J Obstet Gynecol Reprod Biol X. 2023 Jul 22;19:100219. doi: 10.1016/j.eurox.2023.100219. eCollection 2023 Sep.
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.
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.
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.
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.
子宫内膜异位症是一种慢性妇科疾病，常引发胃肠道症状，且常被误诊为肠易激综合征（IBS）。子宫内膜异位症指南并未正式认可饮食改变，对于患者如何自我管理饮食也知之甚少。本研究的目的是了解子宫内膜异位症患者的营养实践和肠道症状管理情况。
通过社交媒体上的子宫内膜异位症支持小组招募参与者，作为一项更大规模调查研究的一部分。纳入标准为：经医生确诊的子宫内膜异位症患者，年龄超过18岁，居住在英国。使用预先定义的访谈指南，通过Zoom进行虚拟半结构化访谈。所有访谈均进行转录，并采用主题分析法进行分析。
对10名子宫内膜异位症患者进行了访谈。所有人都进行了个性化的饮食改变，以管理与肠道相关的子宫内膜异位症症状。饮食改变是基于社交媒体支持、书籍、网站或非营养师专业人士的建议。改变包括限制和排除多种基本食物类别，包括乳制品、谷物（主要是麸质）、蔬菜、水果和动物产品。这些改变影响了参与者的体重、营养状况以及与食物的关系。确定了四个主要主题：1）疼痛的影响；2）严重且不可预测的肠道症状；3）饮食改变及其影响；4）寻求饮食干预的支持。这四个主要主题背后的共同主线是被忽视的感觉、护理延迟和缺乏支持。总体而言，等待诊断、手术的漫长延迟，以及有时手术后症状的复发，导致患者在包括饮食在内的可改变生活方式因素方面进行了无支持的尝试和错误。
总体而言，参与者表现出一些限制性饮食行为模式，并希望获得更多专业支持来管理与子宫内膜异位症相关的肠道症状。这凸显了营养师参与子宫内膜异位症护理的必要性，以帮助缓解肠道症状，同时确保营养充足，并在需要时提供体重管理支持。
