“Just Get Pregnant, It Will Cure Your Endo”: An Exploration of Barriers to Endometriosis Care in “Involuntarily Childless” Women in the UK

Madelaine C. French
In: Women's Reproductive Health · 2025 · vol. 13(2) , pp. 426–446 · doi:10.1080/23293691.2025.2578473 · W4416176671
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This paper explores the barriers to endometriosis care faced by women in the UK who are involuntarily childless, particularly highlighting the harmful advice they receive.

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Abstract

This article explores the diagnostic and treatment barriers faced by involuntarily childless women in the UK living with endometriosis. Drawing on in-depth interviews with 26 participants, it examines their accounts of how clinicians’ framing of endometriosis as a reproductive condition shaped their clinical care. Findings reveal how pronatalist assumptions positioned patients primarily as fecund bodies, establishing barriers to and compounding the challenges of managing endometriosis. Participants described receiving limited information beyond fertility advice while navigating reproductive myths and disrupted care pathways. It is argued that life-course and evidence-based medical care approaches are called for, that center quality of life and recognize endometriosis as both a whole-body and beyond-body condition.

Acknowledgements

The author would like to thank the participants for sharing their stories. Thanks also to Emeritus Professor Ellen Annandale, and Dr. Emily Nicholls for their support and guidance throughout the development of this article. Additional thanks go to Emi Frane, Xiaohang Chen, and Nicholas French for their valuable feedback and thoughtful discussions. Disclosure Statement No potential conflict of interest was reported by the author(s). Data Availability Statement The participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research, supporting data is not available. Notes 1 Infertility and involuntary childlessness are difficult to delineate and can be used interchangeably. This article defines infertility as the active process of attempting to conceive, typically following a medical diagnosis of infertility. Involuntary childlessness refers to those who wished to conceive but were unable, including those who have experienced infertility, where efforts to conceive have ceased. 2 Several participants had stepchildren and, to varying extents, took on caregiving and mothering roles. However, they self-identified as ‘childless’, reflecting a distinction between mothering within an existing family structure and the absence of a child of their own. 3 The National Institute for Health and Care Excellence (NICE) is a UK public body that provides national guidance and recommendations to improve health and social care. 4 While the reasons behind the clinician’s advice were not stated, eligibility for NHS-funded IVF in the UK is determined by local Integrated Care Boards (ICBs). Although the criteria vary regionally, individuals may be denied IVF if their partner has children from a previous relationship.

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Condition tags

endometriosis

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