Specializing Care, (Re)Producing Inequalities: Who Is Excluded from Endometriosis?

The diagnostic and therapeutic delays that are distinctive of many endometriosis care pathways highlight the existence of inequalities that shape the trajectory regarding the disease and the therapeutic care. The social characteristics of people with endometriosis, emphasized by the therapeutic support system, act as factors of differentiation in accessing diagnosis, care, and therapeutic alliance. This article highlights some of these differentiation processes, examines different forms of exclusion, and explains the systemic nature of medical pathway diversification. By adopting an intersectional analysis of medical trajectories and hospital interactions, it analyzes the processes of (re)production of health inequalities and explains the mechanisms of exclusion in endometriosis care.

The symptoms of endometriosis can have a significant impact on the quality of life of those affected, including severe pelvic pain during and outside menstruation, pain during sexual intercourse, chronic fatigue, and bowel problems (Della Corte, Di Filippo, et al., Citation2020; G. Jones et al., Citation2004; Marinho et al., Citation2018; Signorile et al., Citation2022). Difficult to image and diagnose (Berker & Seval, Citation2015), this inflammatory and chronic pathology, resulting from the development of endometrial-like tissue outside the endometrium, remains incurable to date. But more than a chronic condition which challenges etiological and biomedical knowledge, endometriosis, as many scholars have shown, is an emblematic case of how social dynamics, power relationships, and systems of beliefs including gender, class, race, age, and ableism infuse the medical perspective, leading to the (re)production of systemic inequalities. Cara E. Jones, for example, showed how endometriosis, beyond being a diagnostic category of a chronical condition, is “a cultural construction that informs beliefs about the relationship between women’s reproductive anatomy and their social roles” (C. E. Jones, Citation2015, p. 1083). She reveals how endometriosis can be thought of as a modern version of “hysteria,” (dis)qualifying women who deviate from gendered cultural and social norms and translating reminiscences of “wandering wombs.” In that sense, diagnostic and treatment can be seen as ways to “normalize,” regulate, and control female bodies and their reproduction (2015, p. 1,087). Also regarding medical knowledge, Hudson (Citation2022) and Coville (Citation2023) showed how the gaps and lacks in the understanding of the pathology result from cultural, political, and structural processes of ignorance, which silences and marginalizes certain knowledges, making endometriosis an example of “undone science” (Hudson, Citation2022). As both and others showed, endometriosis is then intrinsically related to gendered social representations of how women should experience their body, their menstruation, and their pain. While the female body is biomedically essentialized and seen as vulnerable (Martin, Citation2011), menstrual pain is normalized (Ballard et al., Citation2006; Denny, Citation2004; Wiggleton-Little, Citation2024), and women are made accountable for their own condition (Hudson, Citation2022) in a society which clearly prescribe the concealment of menstruation and related problems—what Sophie Laws called the “menstrual etiquette” (Laws, Citation1990). This social and epistemological context lead to significant delays in diagnosis for endometriosis and difficulties in accessing care, while shedding light on how women’s agency is systemically determined and situated. This article aims to look at these differentiated agencies in the medical system, especially regarding the “specialized care” which is currently emerging in different contexts. By this type of care, I consider here the specific medical and therapeutic management proposed mainly by gynecologists who are “specialists” of endometriosis and offer specific and distinct care, focused on the management of the condition’s symptoms and shaped by international consensuses around the understanding of the disease and the ways to manage it. According to this perspective, endometriosis requires personalized and diversified therapeutic care, with a holistic and multidisciplinary approach (Agarwal et al., Citation2019; Allaire et al., Citation2020; Molina et al., Citation2024; Pickett et al., Citation2023). As a standardized protocol remains ineffective, this therapeutic strategy emphasizes the adaptability of care depending on each individual case—and patient. Using a variety of care strategies, this ideally multimodal and individualized care employs therapeutic options derived from evidence-based medicine, but also methods borrowed from so-called alternative or complementary medicine, such as acupuncture (Giese et al., Citation2023), phytotherapy (Della Corte, Noventa, et al., Citation2020) or physiotherapy (Lyons, Citation2024; Wójcik et al., Citation2022). As the elaboration of an individualized strategy combining different therapeutic methods requires an experimental approach—testing what is effective for the patient and what is not—this care is developed through a trial-and-error procedure based on a dialectic between patient and professional. Highlighting the centrality of the therapeutic relationship, the endometriosis care reveals the interactional issues that are (re)played out during the consultation and treatment itself (Strauss, Citation1992). Shaped by the social characteristics of the actors involved, these interpersonal dynamics reflect systemic relationships that are (re)actualized in the context of the medical consultation (Azim et al., Citation2025; Locklear & Waitzkin, Citation2018; Peck & Conner, Citation2011) and help to differentiate care trajectories. This differentiation of medical pathways, characterized in particular by diagnostic but also therapeutic wandering (Ballard et al., Citation2006; Husby et al., Citation2003; Le Roux et al., Citation2022), reflects inequalities in health and access to care “in endometriosis” (Fourquet et al., Citation2019; Westwood et al., Citation2023). By analyzing some of these dynamics of discrimination and their impact on endometriosis treatment trajectories, this article aims to make visible the processes of (re)production of inequalities within specialized care. Using the concept of exclusion to refer to who, when, where, and why patients cannot enter “in endometriosis” and “in specialized care,” it aims to shed light on the different levels and moments of inequalities, both defined by diverse levels of agency—and thus shaped by social characteristics referring to systemic dynamics and power relationships. This article will thus detail different types of exclusion, operated by and within the medical institution, and show how this specialized care echoes a kind of normalization and control of female bodies to conform to social roles (C. E. Jones, Citation2015) in a biomedical system which incongruously defines their bodies as vulnerable (Martin, Citation2011) and normalizes their pain, while making women responsible for their own condition (Hudson, Citation2022). Through a study of specialized endometriosis consultations and patient-professional interactions in a hospital setting, the aim is to shed light, from an intersectional perspective (Fonquerne, Citation2020; S. Wilson, Citation2021; Y. Wilson et al., Citation2019), on the influence of social determinants in the deployment of an emerging specialized care whose sites are multiplying (Ebert et al., Citation2013; Opoku-Anane et al., Citation2020; Saridogan & Byrne, Citation2013). Through the prism of an analysis that combines social characteristics, socialization, resources, capitals and agency, it aims to explain the systemic dynamics through which the “endometriosis excluded” are assigned. By highlighting the role of personalized clinical care in differentiating treatment pathways, this article invites us to consider different types of exclusion within a care system that is still in its infancy. In doing so, it aims to highlight the vectors of differentiation to reflect on inequalities in endometriosis, but also to think about ways to reduce them. To do this, this article will first discuss the emerging themes from the study of endometriosis care and the related literature to introduce the various research questions that guided this study and that structure this article. The research methodology used to answer them will then be detailed, before presenting the results. The first part of the results will look at “access to endometriosis,” examining the role of gender in access to diagnosis. By considering gender as dynamic and relational, it will reflect on its intersections with other social dynamics and consider diagnostic delay as a systemic process. This first part will highlight those who are excluded from diagnosis. Second, the results will focus on the social power relationships brought into play by the medical institution, particularly through the consultation process, to consider the conditionality of the agreement between patient and professional from a systemic lens. By examining the principle of compliance and the influence of literacy in a care which is based on therapeutic education, this section will attempt to shed light on those “excluded from the therapeutic alliance.” The third part will focus on the specificities of specialized care to highlight the role of an exploratory and individualized approach in diversifying care pathways in the light of systemic inequalities. By reflecting on the different therapeutic modalities and their prescriptions, the aim will then be to identify those “excluded from the ideal care.” Finally, this article will consider the multiple consequences of these different types of exclusion and propose a solution to limit them, based on an already existing tool—the pre-consultation questionnaire. Emerging Themes and Literature: What Endometriosis Care Can Tell Us about Gender, Race, Class, and Therapeutic Relationships The Vestiges of a “Feminine Nature” and the Legacy of Gender Essentialism While the painful experience frequently associated with endometriosis allows for potential relativism, or even euphemism or psychological attribution (Robstad et al., Citation2025), due to the unquantifiable and unobjectifiable nature of the symptom, it is the menstrual register to which the manifestations of the disease echo that acts as the first obstacle to diagnosis. Associated with the menstrual cycle, the pains of endometriosis are often subject to a normalized and naturalized connection between menstruation and pain, contributing to the normalization of symptoms (Guidone, Citation2020; Scott et al., Citation2022) and the invisibilization of the pathological experience. Shedding light on the essentialist dynamics at play, this conception of menstruation as inherently painful reveals a naturalizing rhetoric, according to which menstrual pain is seen as a natural invariant. In doing so, this tendency toward naturalization reveals an association between gender and specific characteristics, enabling the deployment of a gendered essentialism to which the idea of a supposed “feminine nature” belongs (Mosconi, Citation2016). Defined by the physiological manifestations unique to their gender, making them “fragile” beings, this “nature” would then be characterized by an inability to endure discomfort and, by extension, a biased perception of pain, which seems sufficient to ignore the painful symptomatic experience. Rooted in a broader genealogy of the medical sciences, which for a long time employed a model of a universalized and masculinized body (Lawrence & Bendixen, Citation1992), and which largely neglected “feminine” symptomatology, this essentialized and naturalizing normalization of menstruation and its effects translates into the assignment of a naturalized and gendered physiological and bodily experience (Scott et al., Citation2022; Wiggleton-Little, Citation2024) which is intrinsically vulnerable (Martin, Citation2011). The gendered and (pre)supposed attribution of exaggeration or invention of pain (Laws, Citation1990; Lloyd et al., Citation2020), carried by conceptions of feminine nature (Mosconi, Citation2016) embodied as intrinsically vulnerable (Martin, Citation2011), points to the broader issue about gender in care and access to healthcare. Saillant in conditions such as acute coronary syndrome (Huber et al., Citation2022) or stroke (Cordonnier et al., Citation2017), gender, while being a relationally consequential, expose the residues of a patriarchal and essentialist imaginary, which significantly impact the clinical outcomes. By contributing to minimizing the severity of a situation, obstructing necessary examinations, and delaying diagnosis, gender thus forms a social relation that contributes to the fabrication and maintenance of diagnostic wandering. Racial Stereotypes and Socioeconomic Prejudices When considered in relation to the multiple social relations replayed within and by the medical institution (Waitzkin, Citation1979), the difficulties in obtaining a diagnosis are also linked to the effects of racial and/or migrant characteristics on therapeutic care. Like the racial stereotypes regarding the experience and expression of pain, in other words, the unofficial Mediterranean syndrome (Ernst, Citation2000), the social characteristics of women with endometriosis help shape their access to diagnosis. Similarly, and sometimes conjointly, the socioeconomic characteristics of patients can also influence their access to diagnosis, contributing to the assignment of an essentialized class identity used to make sense of euphemized symptomatology (Mik-Meyer, Citation2011). Women with lower educational and/or informational capital are more exposed to symbolic violence during consultations, as will be discussed further, and their status in the labor market, as productive and economic agents, conditions the clinical interpretation of symptoms and shapes diagnostic inclusion/exclusion. Therapeutic Relationship and Consultation as Actualization of (Pre)Dispositions Between narrative work, confrontation with technical vocabulary, and the ability to mobilize medical knowledge (Gaborit et al., Citation2021), the consultation represents an opportunity to engage and actualize both expert and lay social characteristics (Peck & Conner, Citation2011; Peck & Denney, Citation2012; Thornton et al., Citation2011). Shaping the course of the consultation, this kind of interaction reveals the necessary work of mutualization between medical expertise and lay experience, the conditionality of this mutualization process, and the ways in which the various types of capital held by patients act as factors of differentiation. Although the consultation is characterized by a routine and relatively standardized functioning and organization, its interactional components—provided by the doctors—tend to vary depending on the resources of patients. Like time, empathy, and the effort to provide information, the relational and emotional work (Hochschild, Citation2003) done by clinicians, and the way it will be mobilized, is influenced by the stereotypes of professionals (Roberts et al., Citation2021) and by lay knowledge and know-how, such as language proficiency, mastery of potential specialized vocabulary, or the ability to prioritize different types of information. This differentiated availability is thus conditioned by the patient’s ability to adapt to the clinician’s conceptual, relational, ontological, and practical framework. The therapeutic relationship is thus conditioned by a set of factors that extend beyond the framework of the interaction staged by the consultation process and shed light on social and systemic dynamics, of which health literacy is a significant example. Defined as the ability to acquire, understand, master, and communicate health-related information necessary for managing medical care (Berkman et al., Citation2010), health literacy crystallizes part of the communicational and relational issues between patient and professional. Representing a certain level of cultural health capital (Shim, Citation2010), it can be seen as an informational, interpersonal, and symbolic advantage. Granting greater autonomy, legitimizing subjective experience, and facilitating exchanges with professionals, it conditions agency and is often proportionally correlated with the quality of the therapeutic alliance (Czerska, Citation2022). However, since social characteristics significantly condition health literacy (Stormacq et al., Citation2019) such that it is unequally distributed regarding class, level of education, race, or migration status, the possibility of building a care relationship favored by the recognition of the patient’s agency and subjectivity is thus socially and systemically differentiated. This agency is, moreover, probated by the multiple stereotypes at play in the medical setting and possibly in the perception of the clinicians, shaping different possibilities in navigating the exigences of the biomedical environment. In a similar and concurrent way, the therapeutic relationship is influenced by the patient’s disposition to adhere to medical prescriptions (Vermeire et al., Citation2001) as well as her ability to manage the illness autonomously (Mougeot et al., Citation2018), both representing key objectives of therapeutic education. Understood through the concept of compliance, these competencies also shed light on the systemic character at work in the development of care trajectories. By questioning the lay responsibility in the clinical situation (Laursen et al., Citation2019), moreover regarding a feminine condition (Hudson, Citation2022), the concept of compliance also sheds light on how patient involvement may be interpreted in relation to symptoms and their evolution. Since managing endometriosis, as a chronic illness, requires active self-care work—principles of which are transmitted through therapeutic education—the clinical evolution of the pathology is, notably, seen through the lens of therapeutic work performed by the patient herself. Illustrating a form of accountability, this perspective leads to a spectrum of differentiated effects, ranging from empowerment (Mougeot et al., Citation2018) to moralization, conditioned by the patient’s social characteristics and circumstances. By highlighting the influence and unfolding of health inequalities, the therapeutic relationship, and the self-care principle upon which it is based regarding endometriosis reveal biosocial inequalities: the problematization of a symptom points to the (im)possibility of exercising self-management over one’s body. It also sheds light on the differentiated ameliorative potential between those whose social characteristics and capitals are favored by and favorable to the medical institution and those whose resources aren’t. Research Questions Studying endometriosis and its medical management therefore involves considering and analyzing social dynamics that extend beyond the consultation and influence therapeutic outcomes. To explore these various overlaps, this research set out to answer the following question: What effect(s) do social characteristics have on specialized endometriosis care, and how does the care system contribute to the (re)production of systemic dynamics that can result in health inequalities? To explore the various issues underlying this general question and unfolding at different stages of endometriosis care, this article is organized around three sub-questions: (1) How is the diagnostic process influenced by social characteristics? (2) What effect(s) do systemic social dynamics have on the care relationship and the therapeutic alliance? (3) And how do different resources and capitals shape access to multidisciplinary and biopsychosocial care? Each section of the results will therefore address one of these questions.

Studying the Specialized Care of Endometriosis from a Socio-Anthropological Perspective A Specialized Unit in a Swiss Hospital This specialized unit for the therapeutic management of endometriosis is located in a university hospital in Switzerland, in a unit of gynecology. It is led by three clinicians, both specialized in surgery and in charge of specialized consultations. They receive patients with all kinds of medical background and symptoms, sent by another physician or coming from themselves, from teenagers to grown women. Some patients recently received a diagnostic and come for a first appointment, while others may have been diagnosed for several months or years and come for follow-ups. Their pathways, experiences, and backgrounds are diverse: some patients come in the unit with deep knowledge about endometriosis, some arrive with no idea that they suffer from a gynecological condition; some can have multiple past experiences with other professionals, while some may see a specialist for the first time. Patients must generally wait several months between the appointment booking and the consultation because of the waiting list. These consultations are reimbursed by the compulsory health insurance and last generally 30 minutes. The typical consultation consists of receiving the patient, listening to her history, making the inventory of her symptoms, explaining to her few things about endometriosis, and prescribing a treatment—which is generally a hormone therapy combined with a few other recommendations about complementary options. The team, like most other specialists in Switzerland, assumes a holistic approach to the pathology and support multidisciplinary care, including other professionals in the therapeutic management, and are inclined to advise physiotherapy, nutrition, and psychotherapy. This article is based on the results of research conducted between September 2023 and May 2024 in a gynecological hospital unit in Switzerland, in collaboration with a specialized endometriosis team. The aim of the research was to analyze the implementation of an emerging medical practice and its impact on patients’ experience of the diseaseFootnote1. In the tradition of medical social anthropology and hospital ethnography (Lock, Citation2001; Long et al., Citation2008; Panter-Brick & Eggerman, Citation2018), this research analyzes the influence of social and cultural factors on health and medical care. By observing the context in which they are developed and used, it examines professional practices and knowledge through the prism of interactions brought into play by the medical institution (Vidal, Citation2008). This approach enables the study of objects, practices, knowledge, and uses specific to medical care within their context, while analyzing them in light of the cultural, social, political, and economic systems that shape them. Rather than viewing the health-care system as a closed and isolated entity, the aim is to see it as the embodiment of global social dynamics. This research is therefore in line with the feminist political economy of health, which considers power relations such as gender, race, and class to be structures that shape health and access to care. Health is viewed as a consequence of gender inequalities within and beyond the health-care system arising from the interplay of material and cultural factors, which can be illuminated through intersectional analysis (Syed, Citation2021). This research uses a mixed-method approach, and three types of data collection were carried out: nonparticipant observation of medical consultations, semi-structured interviews with patients and team professionals, and nonparticipant observation of interprofessional work at an imaging meeting and symposium. All the data were collected and analyzed by the researcher. Observation of Medical Consultations Observations were carried out on days defined at random with the clinicians of the unit. This made it possible to make observations without any prior selection criteria, allowing a variety of consultations to be attended, including new patients as well as “old” ones, annual checkups as well as postoperative appointments, patients with acute symptoms as well as asymptomatic patients. The aim was to provide the best possible representation of the patients seen on the unit, in terms of their backgrounds, trajectories, and situations. No guide or observation checklist was defined; the goal was to observe the global interaction and identify potential recurrences or determining factors a posteriori, using an inductive approach. All observations were nonparticipatory: the researcher sat next to the clinician and took notes, but did not intervene in the discussion. Despite the possible—and probable—effect of the researcher’s presence on the consultation on its progress, content, and interactions (Sarradon-Eck, Citation2009), the aim was to minimize this influence in order to observe consultations that were as “ordinary” as possible. This is to acknowledge the particular dynamics of conducting a study of the medical consultation and to employ situated reflexivity (Finlay & Gough, Citation2003). Observation was limited to communicative and informational exchanges between patient and doctor, and no clinical examinations were observed directly. Consent was requested orally at the beginning of each consultation. The researcher was introduced, and the purpose of the research and the reason for the observation were explained to each patient. Patients were informed that the research was being conducted in accordance with an ethical procedure, and that they had the right to refuse or ask the researcher to leave the room at any time during the consultation. It was also made clear that none of their personal data, such as their name, address, or contact details, or those of their family members, would be recorded by the researcher. Consultations lasted between 30 minutes and 1 hour, depending on the time available to the doctor. However, most consultations lasted half an hour. In total, 30 consultations were observed during six observation sessions with two different clinicians. The researcher drew up field notes from these observations, which were kept in a field notebook. Extracts from these notes appear in this article. These extracts may take the form of “vignettes”—“field journal excerpt”—which are descriptions of specific consultations observed by the researcher. These vignettes are chosen to illustrate elements observed during the observations as a whole in a concrete and particularly salient way and are therefore used as collected data to interpret the results. The use of this type of data allows for detailed observation, contextualization of information, and reflexivity (De Sardan, Citation1995; Noiriel, Citation1990). Interviews with Patients Semi-structured interviews were conducted with some patients encountered during these observations and recruited at random, without any other a priori selection criteria than being French- or English-speaking: during three sessions of observation—defined randomly—all patients seen in consultation by the researcher were asked to participate in an interview. They were informed of the aim of this method and were given an information and consent form, with more details about the study, its goals, data confidentiality, and their rights as potential participants. If the patients agreed to take part, their contact details were taken by the researcher, and they were called within two days to arrange an appointment at their convenience and in the place of their choice, within a minimum of 1 week to guarantee sufficient time for reflection. Their written consent was systematically obtained the day of the interview, before its beginning. The interviews lasted an average of 1 hour and were conducted according to an interview guide covering four different themes: (A) the intimate and subjective experience of endometriosis in daily life, personally, professionally, and in relationships; (B) the experience of medical support and therapeutic care; (C) (in)fertility and the potential experience of reproductive medicine; and (D) opinions and perceptions of public, media, and social discussions about endometriosis. Ten interviews were conducted with patients. They took place in hospital, public places, or at patients’ home, depending on their preferences. All the interviews were recorded and then transcribed in a de-identified form to serve as a basis for the thematic analysis. A thematic narrative analysis was conducted based on the interview transcripts, allowing for the identification and interpretation of recurring themes across personal stories (Braun & Clarke, Citation2006, Citation2021). Interviews with Professionals This unit, which is led by three clinicians in charge of the specialist consultation, also includes several other professionals who may be involved in the care, depending on the situation, such as radiologists, fertility doctors, and surgeons specializing in urology or colorectal surgery. All the professionals in the specialist unit were interviewed, for a total of 10 interviews, which lasted an average of 1 hour. They took place in hospital or online, were recorded, and were then transcribed in a de-identified manner. The consent of the professionals was obtained orally before every interview. The interviews were conducted according to an interview guide which echoed that used for the patients. This guide included four themes: (A) their professional background and specialization in endometriosis; (B) endometriosis consultations, specific types of care, and related issues; (C) infertility and links with endometriosis and reproductive medicine; and (D) their perceptions of public, media, and social discussions surrounding endometriosis. Similarly to patients’ interviews transcripts, a thematic narrative analysis (Braun & Clarke, Citation2006, Citation2021) was conducted. Observation of Interprofessional Work To complement the different types of data, nonparticipant observations of interprofessional work were also carried out. They aimed to understand the clinical and therapeutic priorities from an interprofessional perspective, as well as how the professionals coordinate their work. To this end, an initial observation lasting around an hour was conducted during a weekly imaging meeting. During these meetings, professionals from the unit review images of patients for whom a joint discussion of treatment options is necessary. During this session, the researcher, who was introduced at the beginning of the meeting, sat among the four doctors present and took notes on interactions. A second observation was made during an international conference on endometriosis care. This took place over two days in a Swiss city, bringing together over 900 international participants for roundtable discussions, keynote speeches, and various presentations. The aim of this observation was to understand how the international scientific community conceptualizes the pathology and envisages its management. It also provided a good overview of the existing consensus on endometriosis treatment and current research priorities. Similarly to the observation of consultation, an inductive approach was adopted for these two observation sites, and no guide was defined, to identify potential recurrences or determining factors a posteriori. Ethics This research was carried out in accordance with a research protocol (ID: 2023-01530) submitted to and validated by the Cantonal Ethics Commission (CER-VD), which ruled on its compliance with the Ordinance on Research Involving Human Subjects (ORH) and the Declaration of Helsinki. All participants have been de-identified, and all participants have given informed consent to participate in the research. The participants of interviews, whose stories are reported, have given written informed consent ( and ). Findings Entering in Endometriosis: The Excluded from Diagnosis If the subjective and lay recognition of a pathological experience often precedes its confirmation by the medical profession, particularly in the case of endometriosis, a therapeutic trajectory remains characterized by the search for a diagnosis. Particularly enlightening, as they are often correlated with a waiting period that can extend to over 10 years (Davenport et al., Citation2023), the diagnostic pathways of endometriosis reflect a frequent wandering (Ballard et al., Citation2006; Denny, Citation2004; Husby et al., Citation2003; Seear, Citation2009), whose study demonstrates the influence and the reproduction of social dynamics. Thus, by highlighting what enables its elaboration or prevents it, the study of access to diagnosis reveals the various obstacles patients may face (Davenport et al., Citation2023) and exposes the normative and systemic dynamics at play (Drinkell et al., Citation2023), shaping trajectories and their outcomes. Allowing one to consider the conditions under which the recognition of the medical institution intervened, access to diagnosis reveals a first dynamic of exclusion, differentiating those who “enter into endometriosis” from those whose clinical picture is excluded from it and are thus condemned to wandering. Normalization and Exclusion by Gender As discussed earlier, the menstrual register used in endometriosis affects access to diagnosis: by normalizing symptoms (Guidone, Citation2020; Scott et al., Citation2022) through gendered and essentialized rhetoric, the interpretation of physical signs cannot be thought outside a naturalizing vision. This normalization was experienced by many interviewees, such as Inès, who recounted in December 2023: “My gynecologist told me, basically, that it was normal.” Similar experiences have happened to Daniela, as she explained during the interview in November 2023: “I’ve always had pain. But I have the impression that it’s sometimes a generalization that you’re supposed to be in pain. In fact, it’s normal to be in pain.” Therefore, access to diagnosis, which occurs through a clinical and symptomatic reading, depends on the possibility of extracting oneself from these essentialist interpretative schemes. This can be difficult, or even impossible, when physicians simply do not listen, as happened to Sophie: “And I spoke about it again to my gynecologist, who always told me that the pain was normal, that it was basically all in my head, that’s it. … Always the same speech” (November 2023). This kind of rhetoric was also encountered by Maïlys, as she recounted during the interview in November: “It’s always so much the same. ‘Take something and then shut up, it’s OK, pain is normal for women.’” Moreover, these stories echo the past experiences of many patients received in consultation and seen during the observation sessions: when they retraced their medical journey, a significant part of them reported past euphemizing and minimization. Facing these essentialized and gendered discourses is then a matter of distancing oneself from the embodied ontology of menstruation, to access another reading and an alternative interpertation. In that sense, women must “undo gender” (Butler, Citation2004): they must exclude themselves from it and disidentify from this naturalized and bodily experience (Scott et al., Citation2022; Wiggleton-Little, Citation2024)—to be considered in another interpretative scheme—and be included “in endometriosis.” However, mediated by interaction with the clinician, this work of disidentification from the menstrual norm highlights a set of skills that are, first, unevenly distributed among women—as we will discuss further. But, second, as the literature shows, this disidentification is only possible if the physical experience corresponds to a specific type of gendered embodiment in the first place: as the female conception of the body usually refers to a racially and class-based situated standard, the condition to undo gender is similarly socially located. In a same way, as pathologies are racialized and classicized (Labuski, Citation2017; Pryma, Citation2017), the extraction of gender, if successful, doesn’t necessarily guarantee entering in endometriosis: the symptomatologic experience must align with a stereotypically defined and socially positioned conception of pain, symptoms. and endometriosis. Therefore, the “entry in endometriosis,” in other words, access to diagnosis, is primarily characterized by the inequalities that differentiate those who can undo gender from those who cannot, who are then excluded from the diagnosis, by default and by gender. Being (In)Disposed to Violence: Race, Class, and Access to Diagnosis as a Systemic Fabric of Delay Thus associated with naturalizing and naturalized representations, endometriosis is part of a set of gendered preconceptions that act as obstacles to obtaining a diagnosis (Ballard et al., Citation2006; Guidone, Citation2020) through their effects on the euphemizing of symptomatology as well as its clinical consequences. Like the MRI, which can only be performed with a doctor’s prescription, the normalization of symptoms such as pain results in the impossibility of accessing the means necessary for a formal diagnosis and, consequently, the material impossibility of “evidentiary” including oneself in endometriosis. And this is what happened to Carla, as she recounted during the interview in November 2023: After several months of enduring problems and pain, she decided to find out what was causing her symptoms. She went to yet another doctor to ask for further tests, as ultrasound had never revealed anything abnormal. However, the doctor refused to prescribe any further tests, including an MRI scan, because he did not see any abnormality. He sent her home, without offering a solution, telling her everything was normal. Therefore, without the means to “prove” that something is wrong, she cannot access a diagnosis, either symbolically or materially. However, as discussed earlier, gendered representations and essentialism aren’t the only factors affecting access to diagnosis. As gender is a relation which interacts with other social dynamics and power relationships—from an intersectional perspective—it also results in specific interpretations and rhetorics which are intertwined with race or nationality. The story of Carla, who is a Latina participant who has lived in Switzerland for 10 years and whom we just discussed, significantly illustrates how stereotypes associated with her nationality or presumed cultural origins—mainly insinuated by her accent—have shaped her therapeutic trajectory (Chapman et al., Citation2013; Hunt & de Voogd, Citation2005). Often accused of exaggerating, being unable to judge the severity of her symptoms, or being “crazy,” she faces the impossibility of extricating herself from a culturalized, racialized, and essentialized gender identity and struggles to find a specialist willing to help. She recounts during the interview: “I’m having a really hard time with treatment here in Switzerland. I’ve already met racist doctors, doctors who’ve called me crazy, doctors who’ve told me that it’s all in my head…” Her therapeutic journey sheds light on the role and implicit use of culturalizing discourses, showing how racist imaginaries, racial and cultural stereotypes, intertwine with gender essentialism (Essed, Citation1991; Rosenthal & Lobel, Citation2020), shaping the interpretation of painful symptoms, which are then psychologized and/or euphemized (Azim et al., Citation2025). Defined by a decade of diagnostic wandering, consultations with multiple different doctors, refusal of examinations, imposition of therapeutic strategies, and gynecological and obstetric violence, her medical trajectory, which she retraced during the interview, highlights how gender and racial relations intersect, resulting in denial of care and, consequently, the impossibility of accessing a diagnosis. Excluded from the clinical picture of endometriosis because she “doesn’t really suffer” and “completely exaggerates her symptoms” or “makes them up,” she is institutionally and symbolically unable to enter in endometriosis. If nationality, cultural origins, or race can thus be interwoven with gender to shape access to diagnosis, so can class and socioeconomic status, as mentioned earlier. Like the case of Maïlys, a former sales employee now almost a stay-at-home mother in a low-income household, women affected by unemployment or leaving the workforce, especially when it occurs in a financially precarious situation, are at risk of having their experience minimized by attributing their symptoms to inactivity, which would, in fact, give them “too much time to invent problems,” as she recounted during the interview, in November 2023. Accused by several doctors of “having nothing else to do,” Maïlys’ medical journey sheds light on how gender interacts with the symbolic value assigned to (non)participation in the labor market and social class to condition an essentialized clinical reading, in which social characteristics are interpreted as the translation of moral values determining the credibility of symptomatology. Like the doctor who told her, “If you had a job, you would be in a better situation and have less time to feel pain,” the social characteristics of patients like Maïlys serve a psychologization and social responsibility of symptoms, illuminating first the gendered accountability regarding their condition (Hudson, Citation2022) and second a class relationship intertwined with gender (Iyer et al., Citation2008). If these different stories of euphemizing shed light on how the unexplained symptoms of women have long been psychologized, and thus remind the historical case of hysteria (C. E. Jones, Citation2015), they illustrate how gender, race, and class characteristics shape diagnostic trajectories associated with endometriosis and illustrate the intersection of multiple factors that contribute to the structuring of wandering and delay as a systemic process (Drinkell et al., Citation2023). Based on the possibility to be recognized as a legitime agent with a credible story (Werner & Malterud, Citation2003) regarding social norms and personal situation, they shed light on what types of illness narratives are legitimate and which ones are not. While the few elements discussed here do not aim for exhaustiveness regarding systemic obstacles to diagnosis, they nonetheless offer, from an intersectional perspective, insights into predispositions to wandering—not as a womb anymore, but as a socially situated women—that help select those patients who can “enter in endometriosis” and produce the diagnostic exclusion of others. Consulting in Endometriosis: The Excluded from Therapeutic Alliance Facilitated by the diagnostic recognition of the symptomatic experience, access to specialized care highlights how the therapeutic relationship serves as the main determinant of successful medical support associated with endometriosis. As this type of care is characterized by a necessary personalization, resulting from the limited efficacy of standardized protocols, it shows how the entire care process is structured and constructed around the dialectic between patient and professional. This then brings to the fore the social characteristics of the actors within the consultation setting (Peck & Conner, Citation2011; Peck & Denney, Citation2012; Thornton et al., Citation2011), emphasizing the conditionality of a therapeutic alliance. It thus sheds light on the impact of social determinants in the differentiation of care trajectories, through their effects on interactions between doctor and patient. This relational centrality and primacy allow us to consider a second type of exclusion: that of the therapeutic alliance. Staging Socializations: Consultation and the (Mis-)Match of Social Characteristics Even relatively standardized, the consultation, because of the type of exchange and resources it stages, acts as an actualization of social dispositions, as the literature discussed earlier reveals. Although this dynamic tends to be rendered invisible by the relative homogeneity of lay behaviors in the face of doctors, as well as by the efforts of the latter regarding information transmission and patient involvement, it is, however, highlighted in certain clinical situations, when the adequacy, or conversely, the gap between the prescribed consultation framework and the patient’s capitals becomes evident. This was salient for this consultation,: Field journal excerpt: The next patient, a White woman in her thirties with a higher level of education and a job in administration, arrives and settles in. She takes out a plastic folder containing all the documents related to previous exams, their results, and the reports from the specialists she has seen. She then takes out another sheet, on which she has prepared a detailed history—with dates, places of consultation, symptoms, and diagnoses—of her medical history as well as a list of questions. During the anamnesis, she uses her documents to review the events chronologically and methodically, clearly describes her symptoms, and uses biomedical terms, such as specific anatomical locations, types of pain, and the full names of various tests. Her account seems sufficiently complete to the clinician, who does not ask for more details and lets her continue without interruption. Once the history is finished, she summarizes her current situation, explains the reason for her visit, and takes out her list of questions. She then takes the initiative to ask the doctor detailed questions and notes his responses. (November 2023) In contrast, this other consultation, observed one month earlier, illustrates the difficulties in building a care relationship when social characteristics do not coincide: Field journal excerpt: The next patient, a White woman in her thirties with a basic level of education and currently unemployed, settles in and begins by explaining that she is not feeling well at all. The doctor asks her to describe her symptoms; she suffers from repeated infections and severe pelvic pain, which she believes are linked to her endometriosis. During her account, she struggles to describe the events chronologically, between cycles of infection and worsening pain, and repeatedly goes back to clarify her explanations. She seems to have trouble describing her symptoms precisely and uses relatively vague terms, such as “belly” or “pain.” During her anamnesis, she repeats several times that the infections are what worry her the most, and that the treatments she has already undergone—prescribed by the clinician and other doctors—have not improved the situation. At the end of her account, she also mentions wanting to treat her endometriosis and brings up her desire for a second pregnancy, concerned about the impact of the disease on her fertility. Throughout her narrative, she was interrupted several times by the doctor, who asked for more details or tried to clarify the information given, to which the patient struggled to respond. She had difficulty with the vocabulary used by the doctor (anatomical locations, stages of the menstrual cycle, medication names, etc.), and most of her responses were vague, complicating her account more than specifying her point. After yet another series of questions from the clinician, she expresses her distress and emphasizes how much her health issues affect her mood. Clearly frustrated that the patient cannot answer his questions precisely and is unconvinced by the effectiveness of the prescribed treatment—whose prescription was repeated several times during and after her account—the doctor prioritizes treating the infections and renews the prescription. Pain management will be the next goal. Advising the patient to return to work, which he thinks could be potentially beneficial for her mood, he does not mention the question of a second pregnancy and ends the consultation, asking the patient to return next month. Once the patient leaves, he confides to me that he believes the patient’s professional inactivity is responsible for some of her distress, giving her more time to think about her pain. (October 2023) While it is evident that the comparison between these two clinical situations cannot be formally considered due to the variability of the patients, their symptoms, the clinicians, and the consultation conditions (first consultation with the clinician for the first patient and follow-up consultation for the second), they are nonetheless representative of the weight of patients’ characteristics, capitals, and health literacy on the course of a consultation and therapeutic follow-up. Highlighting the weight of socialization in the (re)production of systemic obstacles and the creation of (pre)dispositions for the development of a care relationship, these excerpts illustrate how relational possibilities with the medical staff are socially determined. They highlight the role of cultural health capital (Shim, Citation2010) in the success of relational understanding, thus contributing to the exclusion of certain patients from the therapeutic alliance. Care Relationship, Therapeutic Education and Compliance: Between Transmission, Prescription and Social Conditions A significant portion of specialized consultations involves explaining the disease and its mechanisms, thus engaging in therapeutic education, since it allows for better individual management of chronic illness in the absence of curative treatment. As observed during the consultations, this educational work may take the form of oral explanations of the disease’s mechanisms and links with hormones, indications of connections between the pathology and lifestyle, or presentations using images and diagrams to illustrate the condition’s mechanisms and effects on organs. This work of transmission and prescription also shapes the care relationship. Tailored to the knowledge and skills the patient already possesses, or seems to possess, this education materializes the asymmetry between the patient and the professional, between the knowledgeable and the layperson, and thus determines a certain hierarchical relational dynamic (Bruneau et al., Citation2021). An illustration of this was observed during a consultation,: Field journal excerpt: A White woman, who is in her twenties with higher education and who has been referred to the specialist unit for appropriate care after her gynecologist diagnosed her with endometriosis, comes for her first consultation as a new patient. As routinely for this kind of consultation, the first part of the discussion is oriented to the elaboration of a clear clinical picture, thus focused on her detailed medical history and the inventory of all her symptoms. Noticeably in accordance with vocabulary, narrative structure, and level of details, patient and clinician engage in a discussion which is fundamentally dialogical, with the patient willingly answering the clinician’s questions, supplementing her responses with additional details and leading the inventory. Once the anamnesis completed, the clinician asks the patient about her knowledge on endometriosis; a little hesitant, she explains that she probably has the basic information and a good general idea, thanks to her gynecologist and the little research she did on the subject. Despite this response, the clinician initiates an explanation about the disease, its effects on the body and its links with hormones, while showing some images on a computer. Highlighting that his talk may be repetition for the patient, he takes the lead of the interaction, changing the dynamic of the discussion; while the patient was involved and engaged two minutes before, she now fell silent, listening to the clinician without interrupting. As he finished his explanation, he asks the patient if she has any questions about it. The patient politely indicates that this presentation corresponds with her understanding of the disease and with the information she already had, and asks for advice about the treatment, while underlining the symptoms she is the most affected by. This initiative thus reinitiates a more collaborative dynamic, in which patient actively participate, to elaborate an individualized therapeutic plan based on the patient’s preferences. (October 2023) In this sense, the level of health literacy can serve as a potential vector for reducing the symbolic distance between doctor and patient, minimizing the difference between professional and lay informational capital, legitimizing lay expertise (Epstein, Citation1995) and thereby fostering the therapeutic relationship. This has been evident during observed consultations: patients with the greatest health literacy tend to engage in a more dialectical dynamic with the clinician, promoting understanding and encouraging their involvement in care. In a comparable way, compliance can also shape the therapeutic relationship. When mobilized as the sole lens for interpretation, without any analysis of the patient’s social context, therapeutic compliance overlooks the material, logistical, temporal, and economic considerations of lay possibilities. Made visible through potential discrepancies between professional prescriptions and lay possibilities—often interpreted as a lack of will or involvement—compliance’s complexity acts as an additional determinant of relational quality, as seen during the observations: clinicians sometimes think they are dealing with patients who “make excuses.” However, a lack of compliance can be explained by a multitude of factors, which are sometimes far from a lack of motivation or will. This can, for instance, result from different imperatives, such as professional, as Charlotte explained during the interview in October 2023: “I’m away almost every week, so it’s not always easy to do what you want. You do the best you can, but you can’t always do what you want.” These impediments can also result from structural, economic, or even familial constraints, as Maïlys recounted in November: “But same as always: I’m alone, so I can’t schedule appointments whenever I want, because my son can’t stay alone in a waiting room for an hour.” These different situations illustrate how social context, background, and conditions can influence medical possibilities and thus how they shape patient agency beyond the consultation setting. Moreover, from a relational and therapeutic perspective, they also underline the necessity of considering and understanding patients’ situations, with their material, social, and economic capacities, especially since (non-)compliance contributes to strengthening or weakening the therapeutic alliance (Ouvrier, Citation2019). Thus, while therapeutic education and compliance represent two key aspects of the therapeutic relationship, their unfolding reveals the weight of social context and resources in accessing agency and a qualitative understanding. Particularly significant in the context of specialized care for endometriosis, which, lacking curative options, prescribes an autonomous management based on literacy, the therapeutic relationship serves as the cornerstone of this medical support. Therefore, it reveals the differences between patients whose social resources favor therapeutic education and the care relationship, and those whose characteristics tends to exclude them from a potential therapeutic alliance. Treating Endometriosis: The Excluded from the Ideal Care As we have just mentioned, specialized care for endometriosis is characterized, among other things, by therapeutic education and self-care. It also involves a process of experimentation and the development of an individualized and multimodal strategy (Agarwal et al., Citation2019; Allaire et al., Citation2020; Bourdel et al., Citation2020; Molina et al., Citation2024; Pickett et al., Citation2023), often combining so-called conventional medicine with complementary care modalities. Based on a dialectical process of exploration between patient and professional, this multidisciplinary and ideal care revolves around negotiations, which reveals the different levels of agency and patient inclusion/exclusion. Developing a Care Strategy: The Medical Algebra of the Therapeutic Care for Endometriosis Guided by specialist physicians and based on current, and limited, knowledge of the disease, the medical care for endometriosis can be seen as a palliative medical support with the aim of controlling the various manifestations of a chronic and multifactorial disease. Specialized in that it relies on specific knowledge and prescriptions that depart from “ordinary” gynecological follow up (Koechlin, Citation2022), it is defined by a biopsychosocialFootnote2 interpretation of the disease and its lived experience, with clinical guidelines focusing on aspects such as psychological well-being and the social environment of patients. In that sense, endometriosis is conceptualized as a condition which not only affect the physical and bodily experience but also conditions other spheres and domains, such as emotional and intimate life, as one of the clinicians described during an interview in December 2023: “It’s indisputable that the disease -even if it obsviously depends on each patient - influences quality of life, and therefore potentially affects psychological, emotional and intimate life, among other things” This global understanding of the condition and its treatment is reflected not only in recent biomedical literature but also in international conferences and symposia, such as the one observed, where presentations focused on topics such as “enhancing quality of life” or “endometriosis as a systemic disease.” Thus, this care is conceived as holistic in terms of considering the patient’s needs, demands, and environment (Waldvogel et al., Citation2012): the aim is to act on the various variables in the pathology, including exogenous factors, as another clinician explained during an interview in March 2024. This idealized form of medical care thus primarily relies on the development of a form of algebraic equation and clinical profile of the patient. Aiming to identify the elements that need to be addressed, quantify their impact, assess the aspects that can be intervened upon, and estimate possible evolutions, this process assembles all clinical variables to sketch out an individualized therapeutic solution. As seen during the consultations, this algebraic elaboration is reflected in the questions asked during the anamnesis, which aims to list and assess all areas affected by the pathology, as well as estimating the consequences and intensity of these effects on different levels, such as moral, emotional and intimate life, work, and social relationships. In this sense, the therapeutic care can be thought of as a work of development and co-construction between expert and lay subjectivities (Vickers et al., Citation2012), which is intertwined with the diagnostic process and combines expert biomedical interpretation with lay experiential knowledge. Shedding light on a dual tension between experience and expertise, but also between needs and constraints, this therapeutic development exercise becomes a balancing act constrained by the tension between the personalization of the care and guidelines or recommendations (Castel & Robelet, Citation2009)—or therapeutic possibilities. While there is some consensus on optimal interventions to relieve endometriosis symptoms, such as hormone therapy (see, for example, Capezzuoli et al., Citation2022), the diversity of patients situations (Drabble et al., Citation2021; Lemaire, Citation2004), determined by the variability of possible symptoms, the varied intensities of their expressions, their co-occurrences, and their consequences in light of the therapeutic goals, prevents the application of unified strategies for all patients, necessitating personalization; as one of the clinicians once explained between two consultations, “there is no perfect or one ideal solution.” Thus, the goal of therapeutic development for endometriosis is to transform the care of endometriosis into care for the patient: all clinical data, the symptoms presented, must allow for the implementation of personalized therapeutic strategies. During consultations, this involves prescribing various therapeutic modalities with the aim of acting on the diversity of symptoms and consequences. This conversion enables action by conceptually transitioning from symptoms jointly identified—the clinic of—to therapeutically developed dispositions—the clinic for—in which the patient participates (Rothier-Bautzer, Citation2002). However, this organization of care, initially based on a dialectical development between the patient and professional, highlights the evident conditionality of this therapeutic individualization. Because it draws on the same resources that condition access to diagnosis, and because it relies precisely on an agreement between the patient and professional, the ideal care for endometriosis replays the subjectivation processes that socially differentiate patients’ trajectories. Carla’s experiences with different clinicians shed light on this issue. Struggling to find a doctor with whom she can establish a good therapeutic alliance, she often finds herself facing therapeutic impasses caused by a lack of joint exploration and elaboration. During an interview in November 2023, she reported that the prescriptions she receives are often limited to hormone treatment, which she cannot tolerate, and that her requests for alternatives are often ignored. It is argued that she refuses to try the treatment, meaning she is not compliant, and that she probably exaggerates the side effects. Therefore, this conception of care as individualized and personalized benefits those whose characteristics and resources enable full therapeutic collaboration, in other words, those who possess the most cultural health capital (Shim, Citation2010), while contributing to the symbolic exclusion of certain patients from their own “clinical equation”: if some of their symptoms can be identified and noted by the doctor, their agency and subjectivity, necessary for the ideal development of a therapeutic strategy, are erased by the inadequacy of their resources within the dialectical and experimental framework. Accessing and Negotiating in a Biopsychosocial Care: Multidimensional and (Non-)Conventional Therapeutic Modalities If therapeutic development ideally aims to create an individualized and personalized care strategy, it is constituted by the multiplication of therapeutic approaches (Agarwal et al., Citation2019; Allaire et al., Citation2020; Molina et al., Citation2024; Pickett et al., Citation2023) whose goal is, in the absence of curing the disease, to minimize its various symptoms, which are seen as “multifactorial,” as one of the clinician often explains. Thus, combining approaches from evidence-based medicine with mostly pharmacological treatments and modalities that differentiate and complement them, such as physiotherapy (Wójcik et al., Citation2022), dietetics (Barnard et al., Citation2023), or acupuncture (Giese et al., Citation2023), care strategies highlight the conjunctions between so-called conventional and complementary medicine. This plurality of approaches is well reflected in the themes discussed during medical symposia, as one observed, during which workshops and keynotes were given on physiotherapy, neuromodulation, physical activity, “naturotherapy,” or even acupuncture. This clinical problematization sheds light on a plural conception of symptoms and illustrates the clinical applications of a biopsychosocial approach. Similar to pain, thought of as multidimensional and multifactorial (Bourdel et al., Citation2020; Drabble et al., Citation2021), the diversity of its expressions and the impossibility of curing its origin allow—and require—the introduction of multiple and heterogeneous solutions, which aim to treat what one of the clinicians calls its various “variables.” Rooted in the tradition of palliative and integrative medicine, which includes patients’ values and lifestyle in care design (Bagot et al., Citation2021), this therapeutic approach considers as potential vectors of improvement any element constituting the patient’s conditions, whether social, psychological, or material. In this sense, the treatment of endometriosis requires considering available therapeutic options, but also the patient’s lifestyle habits, including diet, physical activity, social practices, and other clinical components such as mental health. However, by clinically considering the patient’s environment and practices, and problematizing them as therapeutic vectors, this approach to clinical care can blend into various forms of moralization, as discussed earlier. While the goal is to optimize certain elements favorable to symptom improvement, the possible behavioral prescriptions face the social circumstances of the patients and their possibilities. Like a certain diet or sporting practices, this integrative approach to clinical care values a particular relationship to health, highlighting inequalities between those who can capitalize on their physical or mental well-being and those who cannot. It thus allows for an evaluation of lifestyle, posing a socially situated form of responsibility for health and its determinants. Moreover, this ideal and multimodal clinical approach, through the prescription of various types of care, pragmatically and practically questions access to them (Cramer, Citation2022; Jacobs Kronenfeld & Ayers, Citation2009): the majority of complementary medicines are not reimbursed by basic health insurance, which de facto differentiates the care pathways of patients based on their economic resources, excluding those who cannot afford multimodal care. On this, Maïlys explained during an interview: “There are lots of things I’ve seen but haven’t tried because I just can’t afford to…” (November 2023). Additionally, often based on care approaches with which patients are already familiar, the use of complementary therapies thus varies depending on the patient. This distinguishes those who already use medical alternatives, such as naturopathy or acupuncture, from those who do not. By capitalizing on the existing therapeutic resources of patients, this clinical approach reproduces health-care inequalities and consolidates the differentiation between those who can capitalize on their health and explore options, and those whose various resources do not allow them to do so. Coupled with the socially situated advantages already discussed, these types of unevenly distributed resources also create a differentiation in the dialectic possibilities for negotiation. Representing a type of capital, they affect patient agency through subjectivation and increase of symbolic power provided by a form of health literacy. This type of resource can thus be mobilized during the therapeutic and dialectical development carried out with the clinician, allowing for greater freedom of choice and granting negotiating power, especially in cases of discord (Ouvrier, Citation2019), shaping the adaptability and personalization of therapeutic strategies in light of social characteristics. A striking example of this differentiated negotiating power is the prescription of hormone therapy, as it is prescribed to many patients, yet many experience undesirable side effects (Della Corte, Di Filippo, et al., Citation2020; Denny, Citation2004). In the same dynamic as the first consultation we discussed, the patient’s comfort with the medical institution and her experience with acupuncture allowed her to choose a different therapeutic strategy. This consultation was observed in October 2023: Field journal excerpt: Follow-up consultation with a White patient in her late twenties with higher education, seen for the first time about 6 months ago. After answering the doctor’s questions precisely and chronologically reporting the effects of the treatment prescribed during her previous visit—hormone therapy—the patient explains that she stopped taking the pill due to unwanted side effects. When the clinician asks for more details, she lists one by one the undesirable manifestations (such as mood swings, weight gain, and loss of libido). Using precise terms to describe her symptoms and their experience, she refers to their previous conversation, where potential side effects had been discussed. Detailing her reasoning in a structured manner, including weighing risks and benefits, the patient proposes to the doctor to consider other solutions. She then asks for clarification about the possibility of surgery and her knowledge of the effectiveness of alternative methods, including acupuncture, which she already practices and seems to relieve her. The doctor shares his opinion on the potential surgery (which he does not necessarily recommend given her clinical situation) and encourages her to continue with acupuncture. Even though he is unsure about its “real” effectiveness, he encourages her to explore options that interest her, which she is familiar with and finds effective. He also recommends looking into physiotherapy and nutrition. However, he does not revisit his stance on hormone therapy and does not insist on a possible prescription; in his view, if the patient manages her symptoms in another way, taking hormones is not absolutely necessary. (October 2023) Conditioned by the level of literacy and cultural health capital (Shim, Citation2010) and possession of other therapeutic resources, the inclusion of patients in this therapeutic ideal is socially determined. With its malleable and collaborative nature, this care model actively contributes to differentiating care pathways and reinforces preexisting health inequalities. Similarly to the social gradient of health (Delpierre et al., Citation2018), it sketches a “social gradient of endometriosis,” where this specialization in care, although aimed at improving the management of a chronic gynecological condition, contributes to excluding a portion of its patients from an ideal care.

As we have seen, endometriosis care significantly reveals the intertwining of pathology, care, and social dynamics. This article thus empirically highlights, through the ethnographic study of a specific hospital unit, what endometriosis care can reveal about gender, race, class, and the therapeutic relationship, as discussed at the beginning of this article. This study thus builds upon feminist scholarship and exposes inequalities resulting from mechanisms combining gender essentialism, racial and socioeconomic stereotypes, and the actualization of dispositions through consultation and medical consultation. These results align, first, with literature regarding the normalization of symptoms (Guidone, Citation2020; Scott et al., Citation2022) associated with a naturalized and gendered physiological and bodily experience (Scott et al., Citation2022; Wiggleton-Little, Citation2024) which is thought of as intrinsically vulnerable, as Martin demonstrated (Citation2011). They also echo studies regarding class identity (Mik-Meyer, Citation2011) as well as cultural and racial stereotypes (Ernst, Citation2000) in regard of the interpretation and euphemizing of pain. Moreover, the results discussed in this article are consistent with literature about the medical consultation and the interaction between doctors and patients: the clinical interview acts as an actualization of expert and lay social characteristics (Peck & Conner, Citation2011; Peck & Denney, Citation2012; Thornton et al., Citation2011), which are mediated by health literacy (Berkman et al., Citation2010) and cultural health capital (Shim, Citation2010). From Exclusion to Inclusion As we discussed, social characteristics have different effects on specialized endometriosis care: they contribute to differentiated care trajectories and shape inequalities by excluding some patients from diagnostic possibilities, therapeutic alliance, and the ideal care. Its medical management and its care system thus participate in the reproduction of systemic dynamics that result in health—and endometriosis—inequalities. The study of specialized endometriosis care sheds light on essentialist logics, highlights the dispositions favorable to and favored by the medical institution, and emphasizes the weight of resources and capitals in access to care. In doing so, it reveals the multiple ways in which systemic social dynamics that structure gender, race, and class relations are reproduced by and within the care system and expressed by different forms of exclusion. This exclusion comes with multiple consequences, extending beyond therapeutic pathways. Acting on the subjective experience of patients, the dynamics at play in the creation and maintenance of "excluded from endometriosis" can also have significant repercussions on the mental and relational health of the affected women, as seen in diagnostic wandering (Nowocin et al., Citation2024). For while the euphemizing of a symptomatic experience or the refusal of examinations may be understood as forms of violence, this can lead to suffering and thus constitute an additional vulnerability factor. Coupled with mental health often already weakened by the experience of chronic pain (Culley et al., Citation2013; Pope et al., Citation2015; Wall et al., Citation2024), diagnostic and therapeutic wandering thus results in a double burden (Robstad et al., Citation2025): it perpetuates the physical suffering caused by the symptoms of endometriosis and leads to emotional and psychological distress. Moreover, considering the weight of past experiences with the medical profession in the choice between continuing or stopping medical follow-up (Bousquet et al., Citation2018), the euphemizing of symptoms or the inability to establish a relationship and an adapted care strategy contribute to the possible discouragement from seeking therapeutic support or medicalization. Reinforcing the exclusion of some patients from medical care, this dynamic, far from being limited to the endometriosis care, also plays a role in the selection of patients who access specialized consultations. In this regard, it is essential to think about exclusion beyond the medical institution itself: if some patients do not access a diagnosis or therapeutic support based on a therapeutic alliance, some women may not even have access to any medical consultation initially. While all the mechanisms explored in this text cannot be removed from the medical consultation overnight, their problematization and visibility represent a fundamental step in a reflection aimed at reducing inequalities in endometriosis. On one hand, calling for professional reflection on clinical practice, this highlighting of the excluded from endometriosis also urges us to avoid an analytical reductionism that would merely see it as an updating of essentially interpersonal and interactional dynamics, and, in fact, helps to shed light on the systemic nature at play in the differentiation of endometriosis care pathways. Furthermore, this reflection and critique, proposed from an intersectional feminist perspective, allows—and urges—us to imagine possibilities for inclusion and consider existing improvement vectors. An example of an already available tool is the pre-consultation questionnaire. Designed to give doctors a quick and concise overview of the clinical situation, this questionnaire, distributed to all new patients in the service, lists the different symptoms, their intensity, and frequency. Given to patients before the consultation, it allows them to produce a relatively complete description of their symptomatology and disease experience, such as the type of pain and its effects, by answering a series of simple, precise questions grouped into different categories, requiring short, closed responses, and using a numerical rating scale or drawings on diagrams. In doing so, it breaks down the work of clinical description, which is inherently dense, into short, precise questions, making symptom narration more accessible. Specifically addressing gastrointestinal, urinary, and sexual symptoms, medication use, any previous diagnoses and treatments, as well as the patient’s situation regarding work and their emotional response to the situation, it offers the opportunity to mention topics that are not systematically addressed in a typical consultation or might be more difficult to raise due to their symbolic value. Moreover, it can be a way to address the priorities of patients and is particularly useful regarding a condition which doesn’t have biological markers, like chronic conditions (Pincus et al., Citation2009). Provided to patients when scheduling their appointment, often weeks before the consultation, it gives patients the time to produce a standardized description of their symptoms at their own pace and according to their mental and emotional dispositions, with the possibility to request assistance, whether for translation or (re)transcription. In this way, it avoids the linguistic and rhetorical skills required in the consultation—oral literacy (Roter, Citation2011)—and transcends the relational and symbolic power dynamics associated with face-to-face interactions with a doctor (Soucie et al., Citation2023), offering the opportunity to reduce inequalities resulting from the self-narration work typically asked during anamnesis. Often neglected by clinicians, particularly because they prefer to ask questions directly and/or find oral and dialectical anamnesis quicker, the actual use of the questionnaire does not exploit the benefits it could offer and, on the contrary, ends up wasting time for patients who complete it while perpetuating clinical inequalities. However, if used more systematically, this preexisting administrative tool would enhance the inclusion of many patients within an efficient, effective—likely more effective given the detailed description it facilitates—and equitable clinical exchange, even across different specialized clinics, if it were shared and coordinated among the various professionals involved. This inclusion could also be enhanced by the development of questionnaires in different languages, based on translation templates, to better include allophone patients and facilitate communication, as not all patients have resource-people or family members available, and as the access to a translator is frequently difficult. If this proposition recognizes the possible bias induced by this type of questionnaire—such as potentially ambiguous or short questions, inconsistency, change of scale or length (Choi & Pak, Citation2005)—admits its micro-level functioning and acknowledges the need for a systemic and radical change in medical practices, training, and knowledges on a macro level, it nevertheless constitutes an easily available and implementable—and cheap—tool which can contribute to minimizing the number of patients excluded. Limits and Relevance of the Study This research obviously has some limitations that must be considered when interpreting the results. The main one is probably the scope of the research, which is limited by the number of observations and interviews carried out. It would therefore benefit from further data. However, it is based on a qualitative, multi-method approach. This allowed for an in-depth interpretation of the results and the cross-referencing of different types of data from various actors, sources, and frameworks, thereby reinforcing its validity, coherence, and rigor. Furthermore, significant contextualization and critical discussion with existing literature ensured its coherence and validity. Although limited to a specific and localized site of care, in a small country with its own medical and insurance system, the results of this research shed light on the social dynamics that are actualized by the very principle of medical care, regardless of where it is provided. It thus invites us to consider its impact on the therapeutic pathways associated with endometriosis. In doing so, the data discussed in this article are used as specific illustrations that highlight systemic mechanisms reproduced globally by and within the medical institution.

By exploring the results of qualitative research combining interviews and clinical observations, this article has highlighted some of the mechanisms by which specialized care for endometriosis, through its emphasis on therapeutic education, experimentation, individualization of care, and the multiplication of therapeutic modalities, contributes to the (re)production of inequalities. These inequalities, manifested through different types of exclusion—those of diagnosis, therapeutic alliance, and the ideal care—are socially situated and shed light on the systemic nature of the differentiation in medical trajectories associated with endometriosis. Although limited in time and confined to a particular and located hospital service, this research offers a concrete way to think about reducing inequalities in endometriosis. By proposing a systematic use of the pre-consultation questionnaire, this article calls for the mobilization and sharing of an already existing tool to improve this type of specialized care, whose deployment is still relatively recent and emerging. By revisiting the consequences and various forms of diagnostic and therapeutic wandering specific to the pathology, this research ultimately aims to encourage professional and clinical reflection to emphasize the possibilities for inclusion “in endometriosis” and equity in specialized care beyond potential and future diagnostic or therapeutic technical tools. If this article focused on the specialized care for endometriosis, it nonetheless sheds light on dynamics at play within the medical system globally. Thus, this specific care represents a particularly saliant illustration of a general process which favors health care distinctively depending on social characteristics regarding gender, race, and class. Thereby, if a deep and impactful reflection is required to better medical management of endometriosis, this intersectional feminist critique of “doing medicine,” understanding patients and diseases in a biopsychosocial way-in partnership with them-valuing lay knowledge, and supporting autonomy is also valuable for all kinds of care, independently of the specialty. Consent All participants gave their informed and oral consent for the researcher’s presence prior to the consultation. They received orally the information about the research objectives and the conditions for the researcher’s participation in the consultation. They were informed that they had the right to ask the researcher to leave the consultation room at any time, without any impact on their medical care. All data were de-identified to ensure participants could not be identified. Regarding the interviews, all participants gave their informed and written consent prior to taking part in the interviews. They received an information sheet detailing the research objectives and the specifics of their participation. They were informed that they had the right to withdraw from the study at any time, without any impact on their medical care. Participants’ names were not disclosed to their physicians. All participants were informed that the data gathered during the interviews could subsequently be published with the necessary modifications to ensure that they could not be identified. All participants gave their informed and written consent for publication that ensured their anonymity. Acknowledgments The author sincerely thanks all the participants who agreed to take part in this research and share their stories and experiences. A sincere thank you also to the clinicians for their collaboration, their welcome, and their availability throughout this study. The author would also like to thank her colleagues from the CUSO feminist workshop, for their proofreading and advice in drafting this manuscript. Thanks also to the reviewers of the journal for their expertise, feedback, and recommendations on this article. Disclosure Statement No potential conflict of interest was reported by the author. Data Availability Statement According to the protocol (project-ID: 2023-01530) approved by the Cantonal Ethics Commission (CER-VD), only the researcher and author has access to the original data. This decision was taken by the ethical committee to preserve the anonymity and the confidentiality of participants, regarding the sensitive nature of the data, and to avoid their possible re-identification. Notes 1 This research is epistemologically aligned with feminist standpoint theory, which acknowledges the socially situated standpoint of knowledge and emphasizes the importance of reflexivity and the purpose of research (Gurung, Citation2020). By considering experience as a privileged scientific object and source of knowledge (Wylie, Citation2003, Citation2012), it sets out to problematize research in light of the situated positions of actors and to consider the epistemic, discursive, and experiential registers of different actors—in this case whether (bio)medical or lay—in an equal way. 2 Initially developed by Engel (Citation1978), the biopsychosocial model includes a dynamic and reciprocal interpretation of the various factors of disease, thus integrating multidimensionally the physiological, psychological, and social components of a pathology. However, despite professional, medical, expert, and ethical attachment to this acceptance of disease within the framework of endometriosis, clinical practice reveals a difficult application of the ideas embodied by this paradigm. Often dissociated and employed within essentializing logics, from a gender and race perspective, these various factors are therefore ontologically and discursively differentiated, and even instrumentalized, in clinical practice.

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