Centring LGBTQ+ women's experiences of endometriosis: A critical mixed-methods analysis

子宫内膜异位症是一种妇科疾病，在英国每10名女性中就有1名（Rogers et al，2009）。在这种情况下，在子宫外发现类似于子宫内膜的组织（All Party Parliamentary Group & Endometriosis UK，2020）。这种组织出血并引起炎症，导致慢性疼痛（尽管很常见，但对子宫内膜异位症的研究非常缺乏。这反映在不明原因和缺乏治疗子宫内膜异位症的护理（Facchin et al，2015）。平均需要7.5年才能确诊（Endometriosis UK，2011），并且经常被误诊（Jones et al，2004）。这可能会增加患者的疼痛和痛苦（Evans et al，2019）。Young et al（2015）强调了子宫内膜异位症的主题，包括疼痛管理、医疗保健专业知识、工作生活和社交生活。因此，越多的知识有关的生物，心理和社会方面的条件，更多的治疗可以定制和补充个人的生活方式。以前的子宫内膜异位症的研究已经通过heteronormative透镜进行。例如，最近的一项系统综述调查了子宫内膜异位症的“伴侣”观点。本研究的参与者为399名男性伴侣（Facchin et al，2020）。考虑到妇女对子宫内膜异位症的直接经验的认识有限，调查男性伴侣如何受到这种情况的影响似乎为时过早。此外，虽然这份文件确实承认它不包括同性伴侣，但它没有解释为什么他们被排除在外。除了在子宫内膜异位症研究中排除LGBTQ+社区外，还有关于女性经历的更一般的假设。性研究往往只关注插入性行为导致的痛苦性交。此外，“性功能”等短语的定义也有局限性，并非适用于所有人（Vercellini et al，2012）。Rea等人（2020）发现只有一项研究提到了子宫内膜异位症女性使用的有关非插入性行为或替代性活动的应对策略（Denny & Mann，2007）。同样，医生为减少症状而给出的建议可能是不敏感的，例如“怀孕”（Jones等人，2004）。这对许多女性来说可能不是一个可行的选择，包括那些处于同性关系中的女性。与医疗保健提供者所显示的LGBTQ+社区相比，文献中对同性关系的忽视可以反映出现实生活中对异性恋者的偏好。无论是否有意，这可能会影响LGBTQ+社区接受的护理质量（Sabin等人，2015）。已经注意到，女性以前在接受这种建议时会感到不安（Young et al，2015），因此这项研究对于消除健康专业人员对子宫内膜异位症的无知和偏见并考虑个人的个人情况至关重要。女性对子宫内膜异位症的描述正在被强调，但并非对所有女性都一样。先前的文献明确指出了子宫内膜异位症研究中关于少数群体的差距，例如来自低社会经济背景的女性，不确定为高加索人的女性和非异性恋女性（Young et al，2015）。很少有人探索子宫内膜异位症女性的账户，这些女性被认为是LGBTQ+社区的一部分（McKay et al，2022）。因此，该项目的总体目标将是检查LGBTQ+妇女子宫内膜异位症的经验，重点是性和关系。这项研究旨在通过减少LGBTQ+社区在接受医疗保健时可能遇到的不平等以及对他们的福祉的后续影响来产生实际影响。

Endometriosis is a gynaecological condition found in 1 in 10 women in the UK (Rogers et al, 2009). In this condition, tissue similar to the uterus lining is found outside of the uterus (All Party Parliamentary Group & Endometriosis UK, 2020). This tissue bleeds and causes inflammation that results in chronic pain (DeDespite being very common, there has been a monumental lack of endometriosis research. This is reflected in an unknown cause and lack of care that can cure endometriosis (Facchin et al, 2015). It also takes on average 7.5 years to be diagnosed (Endometriosis UK, 2011) and is frequently misdiagnosed (Jones et al, 2004). This can increase both pain and distress for people with the condition (Evans et al, 2019). Young et al (2015) highlighted themes of endometriosis that included pain management, healthcare professional knowledge, work life and social life. Therefore, the more knowledge concerning the biological, psychological and social aspects that are relevant to the condition, the more treatment can be tailored and complimentary to individuals' lifestyle.Previous endometriosis research has been conducted through a heteronormative lens. For example, a recent systematic review investigated 'partners' perspectives of endometriosis. The participants in this study were 399 male partners (Facchin et al, 2020). The urgency to investigate how male partners are affected by this condition seems too soon considering the limited awareness of the direct experience women have of endometriosis. Furthermore, although this paper does acknowledge that it does not include same-sex couples, it does not provide an explanation as to why they are excluded. As well as the exclusion of the LGBTQ+ community in endometriosis research, there are more general assumptions about women's experiences that are made. Sexuality research tends to only be concerned with painful sexual intercourse as a result of penetrative sex. In addition, phrases such as 'sexual functioning' are also limited in their definition and are not applicable terms for everyone (Vercellini et al, 2012). Rea et al (2020) found only one study that mentioned coping strategies used by women with endometriosis concerning non-penetrative sex or alternative sexual activity (Denny & Mann, 2007). Similarly, advise given by doctors to reduce symptoms can be insensitive, such as 'getting pregnant' (Jones et al, 2004). This may not be a feasible option for many women, including those in same-sex relationships. This dismissal of same-sex relationships in the literature can reflect real-life preferences towards heterosexual people compared to the LGBTQ+ community displayed by healthcare providers. Whether intentional or not, this may affect the quality of care received by the LGBTQ+ community (Sabin et al, 2015). It has been noted that women have been previously upset when receiving this kind of advice (Young et al, 2015), therefore this research is pivotal to remove health professional ignorance and prejudice concerning endometriosis and consider the individual's personal circumstances.Women's accounts of endometriosis are being highlighted, however not equally for all women. Previous literature had explicitly identified gaps in endometriosis research concerning minority groups such as women from low socioeconomic backgrounds, women who do not identify as Caucasian, and non-heterosexual women (Young et al, 2015). There has been little exploration into the accounts of women with endometriosis who identify as part of the LGBTQ+ community (McKay et al, 2022). Therefore, the overall aim of this project will be to examine LGBTQ+ women's experience of endometriosis with a focus on sexuality and relationships. This research aims to have a practical impact by reducing inequalities that the LGBTQ+ community can encounter when receiving healthcare and the subsequent impact on their wellbeing.