Pain management decisions amongst couples living with endometriosis

http://www.eel-congress.de/

Title: Pain management decisions amongst couples living with endometriosis

Authors: Culley, L, Hudson, N, Law, C, Denny, E, Mitchell, H, Baumgarten, M and Raine-Fenning, N.

Question: While there is evidence of a negative socio-psychological impact of endometriosis on women, little is known about how couples experience living with the condition, and about the impact on male partners. 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 contribute to enhancing the wellbeing of people living with endometriosis by providing an evidence base for improving couple support. This paper focuses uniquely on couples’ decision making regarding endometriosis pain management.

Methods: Contextual interviews with key informants (n=11) were followed by qualitative interviews with 22 heterosexual couples, which were analysed within a critical realist framework. Separate, in-depth, face-to-face interviews (n=44) were conducted with women and men. Inclusion criteria were a laparoscopic diagnosis 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. Data were analysed thematically, informed by an interpretivist and gender-relational approach. A participatory stakeholder workshop with couples, healthcare providers and support group representatives enabled a critical dialogue on emergent findings and the development of recommendations for couple support.

Results: Pain associated with endometriosis can have a major and devastating impact on all aspects of women’s lives and those of their partners. Two key dilemmas relating to pain management emerged. First, medical and surgical treatments that alleviate pain often prohibit conception or pose risks to fertility. Findings demonstrate the difficult choice couples have to make between taking hormonal treatment or undergoing surgery in order to reduce pain symptoms, or rejecting treatment in order to pursue parenthood, while simultaneously assessing risks that their treatment may be ineffective or that conception may not occur. The decision making process is further complicated when partners have differing priorities. Second, dyspareunia requires women to make a difficult choice between abstaining from sexual intercourse, with resultant feelings of guilt, loss and concerns about risks to relationships, or enduring painful sex to experience desired intimacy and closeness. Pain is sometimes actively selected as other factors take priority. When male partners are aware of their partner’s dyspareunia they become reluctant to instigate sex and experience associated feelings of guilt if they then engage in sex or frustration, loss and disappointment if forego sex.

Conclusion: The Endopart study provides unique data on couples’ experiences and male perspectives. Desires for motherhood and intimacy shape women’s choices concerning endometriosis pain management, and are, for some, prioritised over pain reduction. This study highlights that men also have to consider their own desires for fatherhood or intimacy in the context of their partner’s endometriosis. Healthcare providers need to understand the impact of endometriosis pain on couples and the complex factors that influence endometriosis pain management. It is also important to recognise that decision-making takes place within a dyadic context, where both partners’ perspectives and desires are constantly being negotiated.

• www.endopart.co.uk