Disrupted reproduction: the impact of endometriosis on couples’ plans for childbearing

Abstract

Objective Little is known about how couples experience living with the common, chronic condition endometriosis and in particular how the uncertain relationship between endometriosis and fertility impacts on plans for parenthood. The UK Endopart study uniquely investigated the impact of endometriosis on women and their male partners. This paper presents findings on fertility decision making and experiences of trying to conceive.

Design The Endopart study was a UK based cross-sectional qualitative study (2012-13).

Materials and methods In-depth, face-to-face, audio-recorded interviews with 22 heterosexual couples living with endometriosis were conducted. Women and their male partners were interviewed separately (n=44). Principles of systematic sampling were employed to ensure diversity amongst participants regarding age, ethnicity, illness trajectory, and recruitment route. Data were transcribed verbatim and analysed thematically using NVivo computer software, informed by gender-relational theory.

Results Eighteen of 22 couples described endometriosis as affecting their plans to have children. Half (n=9) had sought and/or received medical treatment or investigations for infertility. The remaining nine couples, though not considered infertile, also described a range of impacts on childbearing including: impacts on decisions about reproductive timing, spacing and numbers of children; use of assisted conception technologies; and loss and disruption associated with unwanted childlessness. ‘Anticipated infertility’ as well as actual involuntary childlessness was a significant source of distress and relationship tension.

Conclusions Disruption to childbearing caused by endometriosis impacts on couple relationships in complex ways, not hitherto well acknowledged or understood. Anxiety, uncertainty and anticipated loss are experienced by men and women and should be considered by professionals in the clinical encounter.

Support: Funded by the UK Economic and Social Research Council (grant ref: ES/J003662/1).