Preliminary Materials for a Situated Knowledge of Endometriosis

Laurence Dufour-Villeneuve
In: Women's Reproductive Health · 2026 · vol. 13(2) , pp. 592–612 · doi:10.1080/23293691.2026.2636619 · W7138308783
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This paper presents preliminary materials for developing a situated knowledge of endometriosis, focusing on patient experiences and community perspectives.

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This article develops an epistemological framework using feminist situated knowledge as a “transformative” approach to studying endometriosis, framing it as an initial step in a longer project. Drawing on deconstruction of the disease/illness dichotomy and the concept of “practical coordination,” it maps conceptual and practical problems that structure the field and identifies future directions such as alternative pain assessment tools, recognizing “patient resistance” as situated knowledge, methodological pluralism beyond evidence-based medicine hierarchies, and patient-centred coordination aimed at making endometriosis more livable. A major caveat is that the article is explicitly preparatory and does not present new empirical data, instead focusing on laying groundwork and proposing avenues for further inquiry. This paper is centrally about endometriosis — it focuses on feminist situated knowledge and practical coordination to reframe how endometriosis is understood and studied.

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Abstract

This article presents the epistemology of feminist situated knowledge as a transformative framework for endometriosis, laying the groundwork for a broader field of inquiry. It marks the first stage of a longer-term project by articulating an initial encounter between situated knowledges and endometriosis. By deconstructing the traditional disease/illness dichotomy and emphasizing the concept of “practical coordination,” I sketch a preliminary map of some conceptual and practical problems that currently structure the field. This foundational work identifies several promising avenues for future development, including alternative pain assessment tools, patient resistance as situated knowledge, methodological pluralism beyond evidence-based medicine hierarchies, and patient-centred coordination aimed at making endometriosis more livable. The article thus invites critical medical humanities to engage in a collective effort grounded in the lived experiences of people with endometriosis.
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Abstract This article presents the epistemology of feminist situated knowledge as a transformative framework for endometriosis, laying the groundwork for a broader field of inquiry. It marks the first stage of a longer-term project by articulating an initial encounter between situated knowledges and endometriosis. By deconstructing the traditional disease/illness dichotomy and emphasizing the concept of “practical coordination,” I sketch a preliminary map of some conceptual and practical problems that currently structure the field. This foundational work identifies several promising avenues for future development, including alternative pain assessment tools, patient resistance as situated knowledge, methodological pluralism beyond evidence-based medicine hierarchies, and patient-centred coordination aimed at making endometriosis more livable. The article thus invites critical medical humanities to engage in a collective effort grounded in the lived experiences of people with endometriosis. Disclosure Statement No potential conflict of interest was reported by the author(s). Data Availability Statement Data sharing does not apply to this article as no new data were created or analyzed in this study. Notes 1 Although cases are rare, endometriosis is sometimes reported in cisgender men (Rei et al., Citation2018). 2 This statistic is frequently presented as concerning women rather than anyone with a uterus, which is why I use the word “women” here. 3 However, some cases of endometriosis have been reported in menopausal women (Inceboz, Citation2015; Secosan et al., Citation2020; Streuli et al., Citation2017). 4 However, this heterogeneity is not inherently problematic. Epistemologist and philosopher of science Quill R. Kukla (Citation2025) argues that the idea that knowledge is the ultimate goal of research must be discarded, as it is rather epistemic diversity that characterizes scientific activity. Thus, a range of attitudes deriving more from ignorance than from knowledge is deployed to formulate scientific statements. Epistemic attitudes such as uncertainty, suggestion, recognition of complexity, curiosity, provisional acceptance, identification of missing data, etc., are part of a rigorous, rational approach and are required to underpin normative recommendations and inform future research projects. Therefore, science’s organizing principle is not necessarily that of producing and disseminating knowledge and reducing ignorance. Like Kukla, I take a positive view of the epistemic diversity that inevitably lies at the heart of scientific practices, including those that make up the field of endometriosis research. However, while the author focuses on the fact that the set of epistemic attitudes is more akin to different ways of juggling and engaging with ignorance, which in no way rhymes with failure, they do not address what represents failure for science more globally. While this epistemic dynamism is indeed evident in the biomedical literature on endometriosis, and it is clear that “pure” knowledge is not the primary objective of most of this research, the fact remains that medicine is largely failing to understand and cure endometriosis. 5 The point is not that medicine is driven by explicit or malicious intentions—it is not about villains in white coats clutching their stethoscopes in fear of losing control. Rather, it is about the structural power of institutions and the force of entrenched beliefs, which operate without anyone necessarily intending harm.

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endometriosis

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Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

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