Gender differences in the emotional impact of living with endometriosis

Problem statement \nWhile there is evidence of a negative socio-psychological impact on women, little is known about how couples experience living with the common, chronic condition endometriosis. In particular there is a dearth of evidence on the experience of male partners of women with this debilitating condition. The aims of the UK based Endopart study, funded by the UK Economic and Social Research Council, are to explore the impact of endometriosis on heterosexual couples and to provide an evidence base for improving couple support (www.endopart.co.uk). \nMethods \nQualitative, in-depth, face-to-face interviews with 22 heterosexual couples were conducted. Women and their male partners were interviewed separately (n=44). Inclusion criteria were a laparoscopic diagnosis of endometriosis and that couples were living together at the time of interview. Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Interviews were transcribed verbatim and data were analysed thematically, using NVivo (qualitative data software) and informed by an interpretivist and gender-relational approach. \nResults \nMen’s reports suggested that many took a stoical approach to endometriosis, and were reluctant to acknowledge or discuss any emotional impact of the disease with their partner. However, during the interviews men did describe feelings of worry, and of helplessness at not being able to alleviate symptoms. Some men also reported anger and frustration at the healthcare system and the absence of a ‘cure’ for the pain and suffering of partners. Many saw it as their role to act as advocate for their partner, often taking an assertive stance in consultations. Men also perceived their role as protector, but reported sometimes feeling helpless in carrying this out. \nFindings from women’s interviews reinforce previous research on their experience. Women described how living with endometriosis and treatment side effects impact on their mood resulting in feelings of depression, tearfulness and/or irritability. They were more open about emotions and reported feelings of guilt and loss relating to their perceived gender roles, such as diminished sexual relationships. A few spoke of not feeling feminine or an adequate wife and several had suggested that their partners should leave them in case they could not have children. They described their partner as ‘good’ when they ‘helped out’ or took over household tasks, as these were seen by both men and women as being predominantly female responsibilities. \nConclusion \nGender roles appear to shape the way in which women with endometriosis and their partners react to living with endometriosis. In line with dominant masculine norms, men tend to take a more controlling and assertive role than women, viewing endometriosis as a problem to be sorted, feeling helpless when they cannot find a solution. Drawing on dominant feminine norms, many women report feeling guilty at their perceived inadequacies, for example avoiding sexual intimacy or an inability to undertake routine household tasks. At present discussions of management are focused on the woman, largely ignoring the impact on male partners and on couples. The findings here suggest responses to living with endometriosis are different for women and men and this knowledge can inform the provision of more couple centred services.