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

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 (De

Despite 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.