Treatment decision-making and support needs in heterosexual couples living with endometriosis

Abstract

Endometriosis impacts upon a range of domains including intimate relationships. However, previous research has focused on the woman at the expense of her partner who may also be negatively affected by the condition and its treatment. Couples were interviewed to provide in-depth data on living with endometriosis, either as patient or partner. This paper focuses on decision-making regarding management, and couples’ information and support needs. Twenty-two heterosexual couples, together for at least 12 months, and where the woman had laparoscopically-diagnosed endometriosis, were recruited via NHS clinics, support groups and snowball sampling. Separate, in-depth, face-to-face interviews (n=44) were conducted and transcribed verbatim. Data were analysed thematically and dyadically. Treatment decisions had implications for both partners. The majority of couples reported discussing surgical and medical options together, with men being described as ‘largely supportive’. However, whilst women reflected on living with and managing the condition in the longer term, men reported a desire for a cure and, for some partners, hysterectomy was perceived as a way to “fix” endometriosis. Healthcare professionals need to consider the role of partners in treatment decision-making and be aware that within the couple unit patients and partners may have differing views about how endometriosis should be treated. Signposting to support groups and relevant information, along with couple-focused information that highlights the effect of endometriosis on relationships, would be welcomed by patients and their partners. In addition, men highlighted the need for advice on how best to support their partner and cope with living with endometriosis themselves.