The control of pain - A critical discourse analysis of Socialstyrelsens guidelines for Endometriosis

This thesis would not have been possible without the unwavering support of my supervisor, Riya. Although this project stems from genuine interest and passion, it is easy to lose your footing and feel as if one’s project is directionless. When I have turned to Riya with these feelings of doubt, she has not only given me brilliant advice, but has been an anchor, reminding me that writing is a process of ups and downs, whilst ensuring me of my abilities. I am so grateful for your patience and kindness Riya, thank you for everything. To my classmates, I am so proud of us! Spending these last two years with you has been such a genuine pleasure. Our conversations have taught me so much and have changed me for the better. Although I grieve the fact that we are the last class to graduate from the Masters program in Gender, Migration and Social Justice, I am assured by the fact that you will all harbour its legacy in your future projects. To Maja, and all those who contribute to the Division of Gender Studies, thank you for remaining a critical feminist voice in academia and for all your brilliant research. And to my partner, Benjamin, thank you for always comforting me and making me laugh. Thank you for the hugs and gentle words. Thank you for all the discussions and advice. I am constantly in awe of your kindness, intelligence, wit and beauty. Our love inspires everything I do. 1

and keywords This thesis analyzes Socialstyrelsens (Swedish Social Services) guidelines for endometriosis healthcare, with the aim of understanding the social aspects of the medicalized field of endometriosis. Former research on transnational and Swedish endometriosis experience, studies on endometriosis guidelines and Socialstyrelsens’ guidelines for healthcare, is presented to contextualize the project. The thesis’ methodological framework consists of feminist critical discourse analysis, based on the writings of Fairclough and feminist reflections on discourse, power and reflexivity. The theoretical framework draws upon theories on discourse and biopower, workfare, gender and the body, feminist bioethics as well as theories on the sociology of pain. The critical discourse analysis of the Socialstyrelsens guidelines highlights four main findings. The first is the centrality of fertility in the document while lacking discussions on the social aspects of reproduction. The second section highlights that the social perspectives in relation to pain are not accounted for. The third finding reveals how the guidelines emphasise the importance of endometriosis treatment with the overall goal of being able to lead 'normal' working life and enforces able bodied as the norm. The last theme addresses the ambivalences in the representation of gender in the document, and critically analyzes feminizing practices.

Endometriosis, Socialstyrelsen guidelines, pain, queer theory. Nyckelord: Endometrios, Socialstyrelsens riktlinjer, smärta, queerteori. 2 Table of contents 1. Introduction .................................................................................................................... 4 2. Aim and research questions ........................................................................................... 6 2.1 Aim ........................................................................................................................... 6 2.2 Research questions ................................................................................................... 6 2.3 Following the research problem ............................................................................... 6 3. Research field .................................................................................................................. 7 3.1 Transnational experiences of endometriosis and related healthcare ........................ 8 3.2 Swedish experiences of endometriosis and related healthcare ............................... 11 3.3 Government guidelines for endometriosis healthcare ............................................ 13 3.4 Socialstyrelsen’s guidelines for healthcare ............................................................. 13 4. Theory ........................................................................................................................... 15 4.1 Discourse and Biopower ........................................................................................ 15 4.2 Workfare ................................................................................................................. 16 4.3 Sex, gender and the body ....................................................................................... 17 4.4 Feminist Bioethics .................................................................................................. 18 4.6 Sociology of chronic pain ...................................................................................... 19 4.7 Operationalisation .................................................................................................. 20 5. Methodology, methods and material .......................................................................... 20 5.1 Material .................................................................................................................. 20 5.2 Methodology .......................................................................................................... 21 5.3 Method ................................................................................................................... 22 5.4 Ethical considerations ............................................................................................ 24 6. Analysis: tracing the social in the medical ................................................................. 26 6.1 The centrality of fertility ........................................................................................ 27 6.2 Access to care and pain - Whose pain is taken seriously? ..................................... 30 6.3 Cost efficiency and workfare - Patients in the realm of the neoliberal order ......... 35 6.4 Gendered ambivalence - Who is the patient group for endometriosis? ................. 37 6.5 Suggestions for future endometriosis guidelines ................................................... 43 7. Concluding discussion .................................................................................................. 45 7.1 Summary and conclusions ...................................................................................... 45 7.2 My thesis’ contributions ......................................................................................... 48 7.3 Reflections and future research .............................................................................. 48 8. References ..................................................................................................................... 51 3 1. Introduction Whose pain is taken seriously? This question has been at the center of recent testimonies of experience regarding healthcare for endometriosis, a reproductive chronic disease where tissue similar to that inside the uterus grows outside the organ (1177.se). The condition is chronic, and symptoms consist of fatigue and intense pelvic pain, usually worsening during periods and ovulation. Studies also show correlation between endometriosis and irritable bowel syndrome (IBS), immunological diseases and cardiovascular disease (Kirk et al, 2024, p.1). Endometriosis was discovered as early as the 19th century (Benagiano et al, 2014), but is still a critically underfunded medical issue, which has implications on healthcare, research and patient experience (Kirk et al, 2024, p.1). One of these implications is the omnipresent lack of recognition regarding endometriosis, both in the general population and amongst healthcare professionals (Kirk et al, 2024, pp.1-2) Swedish media accounts endometriosis experience display the material effects of lacking recognition within healthcare settings. One woman share how she had to wait 11 years to receive diagnosis, despite her symptoms clearly correlating with endometriosis diagnosis criteria (Lind, 2024). Another woman experienced dismissal from healthcare services, who told her cramps were part of a regular menstrual cycle, despite her collapsing and screaming in agony from her pain (Monzon, 2024). She did not receive her endometriosis diagnosis until 8 years after first experiencing symptoms. These articles give examples of how intense menstrual pain is dismissed by Swedish healthcare professionals as unproblematic parts of patients’ menstrual cycles, which contributes to extensive diagnostic delays (Lind, 2024) (Monzón, 2024). On average, it takes 8 years to receive diagnosis and related treatment for endometriosis in Sweden (Monzón, 2024). RFSU states that the disease affects 10 percent of Swedish people with a menstrual cycle (RFSU, 2022), with an estimated high number of unreported cases (Monzón, 2024). "Endometriosföreningen", an association which works with patient support and political change in Sweden, mention that one of the most common misconceptions of the disease, which prevent patients from receiving healthcare and working coping-strategies, is the normalisation of excessive menstrual pain (Endometriosföreningen, 2021). When I approached the topic of endometriosis, I was hugely inspired by these discussions on the normalisation of pain. 4 In an article by Aftonbladet, a Swedish trans-man shares how he was told by endometriosis healthcare that since he was not a woman, he had “nothing to there”, dismissing him even though it was later shown that he had severe endometriosis, which had spread to the bowels (Melin, 2025). This displays how cisnormativity and feminization of endometriosis as a disease, contributes to healthcare professionals dismissing trans and queer patients from necessary healthcare, leading to symbolically and materially violent consequences. Considering these examples of exclusionary practices in swedish endometriosis healthcare, together with recent years regression regarding trans inclusivity, illustrated by the violent decision to exclude trans women from the legal definition of a woman in the UK (Haq, 2025), I also took an interest in the question of trans inclusivity and feminization in relation to endometriosis. These combined interests motivate my choice of material: Socialstyrelsens guidelines on endometriosis healthcare. In Sweden, Socialstyrelsen (The National Board of Health and Welfare in Sweden) provides guidelines for specific healthcare concerns, which are used by medical executives and practitioners in the whole country (Socialstyresen, 2023). These guidelines are written in correspondence with current research, and are done to assess the current functionality of medical services as well as to give treatment recommendations, with the overarching goal to create good and equal healthcare for all (Socialstyrelsen, 2023). My

is a roughly 100 page long document which was published in 2018, and are the first guidelines for endometriosis produced by Socialstyrelsen. Since Socialstyrelsen is the most prominent public health awareness oriented national board in Sweden, their definitions and discussions on endometriosis are discursively influential, motivating me to analyze the guidelines using critical discourse analysis. Given my gender studies background, my theoretical focus lies on feminist perspectives on healthcare, making me interested in the social factors which inform endometriosis experience, and the ways these are more or less evident in my material. Thus, the main aim of this thesis is to apply a social lens to the guidelines. 5 2. Aim and research questions 2.1 Aim This thesis explores how endometriosis and its target patients are defined and framed by The National Board of Health and Welfare in Sweden (Socialstyrelsen). The main aim is to examine the medical diagnosis of endometriosis through a social lens, and to highlight the importance of utilising inclusive and informed language in state healthcare policy, to ensure equal practice and access for all. A feminist critical discourse analysis enables this thesis to analyse the social aspects that are embedded within public healthcare awareness documents. 2.2 Research questions 1. How is endometriosis defined in Swedish public healthcare? 2. How can we explore the social aspects of endometriosis by examining Socialstyrelsens guidelines? 3. How can feminist theories help in conducting a critical discourse analysis of Socialstyrelsens’ guidelines? 2.3 Following the research problem Normalisation of pain, dismissal of symptoms and diagnostic delay are not just experienced in Sweden, but globally. In an article for the BBC, a woman with endometriosis speaks of lacking workplace support, recalling that her past employers have not understood the severity of her condition (Baines, 2025). This testimony reflects a larger issue, being that one in six people with endometriosis in the UK has to leave their main source of income due to their diagnosis, according to Endometriosis UK. Further, The Scotsman reports how many endometriosis patients experience their symptoms being downplayed by healthcare professionals, some being told that the “only way to fix it is through pregnancy” (McCann, 2025). The Better India writes on two women’s experiences of endometriosis, and their excessive period pain not being taken seriously (Mani, 2024). The systematic dismissal of one of the women’s symptoms as “just period pain” led to a diagnostic delay of 14 years. (Mani, 2024). In Australia, a woman had to wait 6 years to receive her diagnosis after 6 repeatedly begging doctors to help her (Leach, 2024). The same article reports how 2 out of 3 Australian women experience healthcare discrimination (Leach, 2024). Transnational media accounts of trans, intersex and queer experience of the disease gives insight into how feminizing the issue can worsen dysphoria and healthcare experience for patients. One Australian patient recalls the increased feeling of dysphoria stemming from endometriosis being considered a “women’s issue”, considering that they do not identify as a woman (Withers, 2023). They also felt as if they had to constantly justify and explain their trans-identity in healthcare encounters related to endometriosis, which they felt was exhausting. The Endometriosis Foundation of America writes on the experiences of a trans man with endometriosis, who recalls him and his trans peers feeling uncomfortable in reproductive healthcare settings, considering that they are traditionally seen as women’s only spaces (Stovicek, 2018). Another trans person with endometriosis from Canada, felt as if they experienced a double battle with the disease: one against the excruciating pain of endometriosis and the other against misgendering and dehumanizing practices in healthcare settings (Landry, 2021). In this section, I have aimed to provide background for my topic as well as to summarize the overall aim of the project. The following section, chapter 3, introduces findings from relevant fields, including research on endometriosis experience as well as projects on healthcare guidelines. In chapter 4, the theoretical framework of the thesis, consisting of theories on biopower, workfare, queer understandings of gender and sex, feminist bioethics and sociology of pain, is described and discussed. The methodological framework, consisting of feminist interpretations of Fairclough's critical discourse analysis, is later introduced in chapter 5, as well as feminist reflexivity and how it informs my work. In chapter 6, I utilize these methodological and theoretical tools to thematically analyze my material. I conclude the analysis by giving suggestions for Socialstyrelsens future renditions of endometriosis guidelines. Finally, chapter 7 includes a concluding

which summarizes my findings, highlights their unique contributions as well as suggestions for future research. 3. Research field To contextualize the thesis, this section consists of an overview of relevant research. This provides a

to the thesis and shows how this study is located within broader fields 7 of research. Previous research is structured thematically, based on prominent foci within contemporary research done on endometriosis experience and healthcare. The field of studies conducted on the topic of endometriosis experience was much wider than that of guideline analysis, making the latter section much less comprehensive. This motivated me to include medically situated articles regarding endometriosis guidelines, despite their epistemological distance from this project. In addition to published research, I also include two recently available student thesis projects in the section on Socialstyrelsens guidelines. They were included since they directly address my topic and indicate the novelty of social studies on endometriosis. These sources are treated differently than peer-reviewed academic articles, and are not cited in the analysis. The four thematic sections of the literature review are: Transnational (non-Swedish) experiences of endometriosis and related healthcare, Swedish experiences of endometriosis and related healthcare, Government guidelines for endometriosis healthcare and Soialstyrelsens guidelines for healthcare. 3.1 Transnational experiences of endometriosis and related healthcare The transnational research field on the experiences of endometriosis and related healthcare is extensive, consisting of studies focused on women's experiences, trans and intersex people’s experiences, and clinicians perspectives. For example, Lightbourne et al (2024), analyzes Irish women’s experiences of the disease and medical services, whereas Kaltsas et al (2024) reviews research on trans-men's experiences of the disease and Young et al (2018) explores the perceptions of clinicians in endometriosis healthcare in Australia. Research done on the topic also utilizes a range of methodologies. For instance, Pina-Romero (2023) uses ethnographic interviews to explore experiences related to the production of ignorance from the women of “Endometriosis Mexico”, a Mexican based endometriosis association . Other research utilizes a review-based or content analytical approach, such as Giacomozzi et al (2024) which applied a systematic-review approach to former research exploring the experiences of endometriosis within trans and intersex demographics. A survey based approach was used by Carvalho et al (2024), to explore the experiences of pain, sexual distress and mental health in trans and intersex patient groups of the disease, whereas Bergen et al. (2023) used a narrative methodology to capture the lived experience of Kenyan women with endometriosis. 8 Research on endometriosis represents studies conducted across numerous contexts, including Ireleand, Australia, Mexico and Kenya. Other examples of research contexts can be found in Abraham & Rajasekaran (2023), which analyzed two American memoirs on endometriosis experience, as well as some studies which were situated internationally, such as Eder & Roomaney (2024) who interviewed trans and non-binary participants with endometriosis, which were recruited through social media internationally. Below I organise the relevant research on the topic, in thematic categories. A prominent theme in the articles was the prevalence of medical delegitimization of endometriosis related symptoms (such as intense pain worsening during menstruation). One article describes how a woman with endometriosis, who experienced severe abdominal and vaginal pain which worsened during her periods, was told that “periods are supposed to hurt” by a doctor when seeking medical help (Abraham & Rajasekaran, 2023, pp. 577-579). Another source describes that a reason for diagnostic delay within trans demographics of endometriosis, is the dismissal of symptoms as merely manifestations of gender dysphoria, rather than related to a physiological condition (Carvalho et al., 2024, p. 6). A related issue mentioned in some of the articles is that of medical gaslightning, referring to when medical professionals use their powerful position to deny the validity of patients' reality and lived experience. For instance, Eder & Roomaney (2024) report how medical gaslighting made their trans participants feel invalidated and blamed for their issues, which was accompanied by a disproportionate focus on fertility instead of patient needs (Ibid, pp. 914-916). Evans et al. (2022) presents the issue of medical gaslighting as gendered, describing how one of their participants felt as if medical professionals found her husband more credible than herself (ibid, p. 2099) A significant delay for diagnosis is reported in former research on the topic of endometriosis experience, most accounting for several year long diagnostic delays for the average patient. Delegitimization and delay for diagnosis is partially explained by ignorance regarding endometriosis from medical professionals. Piña-Romero (2023) explains how ignorance regarding the disease is a central part of the experiences of their informants (Ibid, p. 3, pp. 9-10). Another article describes how patients felt the need to educate themselves on endometriosis because the expert competence in healthcare services for the disease was so low (Lightbourne et al., 2024, pp. 319). Further, some sources report how lack of resources for healthcare services related to endometriosis contribute to diagnostic delay (Bergen et al., 9 2023, p. 6). Research done with trans and intersex people as its main demographic point to how trans and intersex identities seems to be related to an exacerbation of already existing delays and difficulty to pertain endometriosis diagnosis, making the issue of underdiagnosis even more pressing within this demographic (Jeffrey et al., 2024, p. 3; Kaltsas et al., 2024, p. 4; Eder & Roomaney, 2024, p. 912; Carvalho et al., 2024, p. 6). Former research report a prevalence of discrimination within endometriosis healthcare. In women’s experiences, the discrimination mostly consists of normalisation of pain, an androcentric outlook on healthcare and general disrespect, stigmatization and generalizations of their bodies and needs (Abraham & Rajasekaran, 2023, p. 577; Piña-Romero, 2023, p. 9;Lightbourne et al., 2024, p. 318). One of the articles describes the historical heritage of misogyny in endometriosis healthcare, stigmatizing women with excessive menstrual pain as crazy and hysterical, which is described as having consequences for current healthcare experience (Piña-Romero, 2023, p. 9). Trans and intersex experience of discrimination within healthcare is described as related to the overall cisnormativity of endometriosis healthcare, labelling it a “women’s issue”, as well as through misgendering and reluctance to use correct pronouns in specific medical encounters (Giacomozzi et al., 2024, p. 16; Eder & Roomaney, 2024, p. 916-920; Kaltsas et al., 2024, p. 4; Carvalho et al., 2024, p. 7; Jeffrey et al., 2024, p.2-3). Jeffrey et al (2024) report how one of their trans participants removed their own IUD, due to fear of returning to reproductive healthcare providers because of previous experiences of discrimination (2024, p. 2) Recounts of positive experiences of endometriosis healthcare were not as prevalent in former research, but was described in one article as characterized by instances were there was a swift transferral to specialist care (Lightbourne et al., 2023, p. 313), and another as linked to inclusive language in descriptions of body, reproduction and sexual themes (Eder & Roomaney, 2024, p. 920-921). In regards to experiences of endometriosis outside of medical encounters, the research field shows how endometriosis (especially when untreated) has negative effects on quality of life, mental health, identity and social relationships. Some articles also indicate a correlation between untreated endometriosis and increased work absence (Lightbourne et al., 2024, p. 311; Kaltsas et al., 2024, p. 8; Jeffrey et al., 2024, p. 3; Bergen et al., 2023, p. 8). 10 Young et al. suggest that there is a tendency amongst their informants (who worked as clinicians in Australia) to portray women with endometriosis as hysterical (Young et al., 2018, pp. 349-350), as well as equating them with their reproductive functions. This further established the field of medicine as the authoritative knowledge producers of their bodies (Young et al., 2018, p. 345). Although these

are based on clinicians' opinions on women with endometriosis, it is likely that clinicians normative assumptions towards women will also affect trans and intersex people within the highly feminized medical field of endometriosis, as described by Jeffrey et al. (2024, p. 3). This is not to suggest that these experiences are entirely similar, on the contrary I am of the belief that different embodiments, individual and group-related, will always produce unique experiences. Rather, this literature review shows that womens and trans/intersex people's experiences of endometriosis might have overlapping qualities. 3.2 Swedish experiences of endometriosis and related healthcare The research field regarding Swedish experience of endometriosis and related healthcare is less extensive than its transnational counterparts, consisting mostly of projects focused on women’s experiences, with research on endo-experience within trans and intersex demographics (found in the scope of this literature review) being marginal. However, studies on endometriosis from various contexts are starting to address the urgent need for more inclusive research on queer perspectives on the disease (Giacomozzi, 2024, p. 18), motivating the significance of the queer perspective in this thesis. Methodological choices in the field varied from surveys, qualitative content analysis and interviews. For example, Bodén, Wendel & Adolfsson (2013) utilized questionnaires to gather the experiences of school medical services from adolescents with endometriosis. Grundström et al., (2023) also utilized quantitative methodology, through surveys directed at women with self-reported endometriosis regarding validating/invalidating communication in relation to their diagnosis. Examples of qualitative methodology can be found in Hållstam et al (2018), who used interviews with women in their mid twenties and thirties regarding their experiences of living with painful endometriosis. Healthcare experience in Sweden closely resembles those from transnational studies, displaying the issue of significant delay to receive diagnosis. Another theme prevalent in the 11 field was professionals excusing patients excessive menstrual pain as normal parts of their menstrual cycle, again tying into transnational findings. Grundström et al., (2020) write how their informants reported normalisation and trivialisation of their excessive menstrual pain as main derivatives of their negative experiences of endometriosis healthcare (Ibid, p. 21). Another article points to how knowledge regarding pain is gained, lost and negotiated in healthcare contexts treating endometriosis, sometimes contributing to epistemologies of ignorance (Hallström, 2024, p.1). Another aspect brought up in former research is the double-edged experience of endometriosis healthcare. Grundström et al. (2018), describes how some patients experience endo-healthcare as not entirely negative but also consisting of positive experience of sympathy and understanding from health care professionals (Ibid, p. 207). Further, Hallström (2024) identified patients' feelings of relief when receiving recognition and diagnosis from medical professionals, providing positive effects on their self-relation and marking a critical turning point in their lives, while still not solving the problem of not being taken seriously in healthcare settings comprehensively (Ibid, p. 14). In regards to endometriosis' effect on patient wellbeing, the Swedish research field also points to the fact that endometriosis (especially when undiagnosed and untreated) has a negative effect on quality of life and social relationships. One article points to the importance of understanding and mediating epistemic obstacles within endometriosis healthcare, as central to improving the quality of life of patients through recognition (Hallström, 2024, p.2). Two other articles point to the dependence people with endometriosis have on their close social relationships, which both proved to be helpful and harmful to their quality of life (Grundström et al., 2023, p.5;Hållstam et al., 2018, p. 99). Again my material contributes to this field by providing critical perspectives on Socialstyrelsens guidelines, which shape Swedish endometriosis experience, especially in healthcare settings. It also contributes to this field by providing queer perspectives on the issue of endometriosis, which is lacking in former research of Swedish experiences of the disease. Although healthcare discrimination is forbidden by law in Sweden (DO, 2024), there are a large number of unreported cases (DO, 2023), motivating the need for further awareness on the issue. 12 3.3 Government guidelines for endometriosis healthcare Onto research which is more closely related to the material of this thesis, namely research done on government guidelines for endometriosis healthcare. Research on the topic primarily used systematic review-based methodologies, and focused on the scientific basis and treatment plans of guidelines, using comparative analysis on national as well as international guidelines. This field was found to be rather slim, further motivating the significance of this thesis. Hirsch et al. (2017) suggest that there is a large variation in their material in regards to quality of healthcare and treatment plans. It also mentions that a third of the recommendations made in the guidelines were unreferenced, and that the involvement of women with endometriosis varied substantially (Hirsch et al., 2017, pp. 560-562). This supports former research on the topic, pointing to the poor quality of guidelines focused on endometriosis related pain (Hirsch et al., 2017, p. 562). Kalaitzapoulos et al. (2021) state that pain mediation and fertility preservation were the most common reasons for seeking endometriosis related health care in their selection of materials, and suggest that chosen guidelines correspond fairly well in regards to their treatment recommendations for pain and infertility issues, although they differ some in regards to recommendations for pain medication (Kalaitzapopulus et al., 2021, p. 7). Former research primarily analyzes endometriosis guidelines from a clinical perspective, motivating the need for more social scientific studies on endometriosis guidelines. Feminist perspectives are also lacking in former research on guidelines, motivating the theoretical significance of this thesis. 3.4 Socialstyrelsen’s guidelines for healthcare Onto the research field of analysis done on Socialstyrelsens guidelines for healthcare. Research at hand conducted comparative analysis of other administrative documents and Socialstyrelsens guidelines (Andersson & Kindevåg, 2024) and analyzed guidelines independently (Topor, 2010), utilizing qualitative content analysis as their methodological framework for research. This field was also found to be rather slim, again motivating the significance of my project. 13 In Andersson & Kindevåg (2024), differences between Socialstyrelsen and Skolverkets documents for healthcare professionals in geriatric care, were identified as linked to institutional power hierarchies in the Swedish authoritative landscape (Andersson & Kindevåg, 2024, pp. 130-131). Both of the documents strongly encouraged tolerant communication styles towards patients cultures and integrity, and considered it vital to have be able to deal with ethical dilemmas within healthcare, to further ”democratic values and human dignity” (Andersson & Kindevåg, 2024, pp. 120-127). The authors critique that neither of the documents contained descriptions of how healthcare professionals should be educated on norm criticism and democratic values, but instead take this knowledge for granted (Andersson & Kindevåg, 2024, pp. 130-131). In Topot (2010), medicalizing practices (such as putting emphasis on diagnostic requirements rather than social experience) in the knowledge base for Socialstyrelsens guidelines for bipolar disorder and schizophrenia, are problematized as a practice that ultimately individualizes the perspectives of the conditions (Topot, 2010, pp. 70-74).

for mediating psychiatric conditions developed through social practices are not included in Socialstyrelsens knowledge base, since they are not considered as evidence-based enough (compared to sources within medicine). This excludes social perspectives from the finalized guidelines, something considered as a problematic consequence of increased medicalisation of the psychosocial field (Topot, 2010, pp. 70-74). Onto the field of student papers on the topic of Socialstyrelsens guidelines. As stated above, these were chosen despite not being peer-reviewed, considering their proximity to my thesis project. Topics in the student projects ranged from guidelines for trans and intersex individuals (Skanung & Svensson, 2024), to representations of depression (Ahlbertz & Forsberg, 2021). In Skanung & Svensson (2024), the writer’s describe how potentially regretting gender affirming care was more problematized in guidelines for transgender youth in comparison to people with intersex variations (Skanung & Svensson, 2024, pp. 44-46). This is proposed as linked to the illigitamizing of trans-people's need for gender affirming care and the stigmatisation of intersex bodies (Skanung & Svensson, 2024, pp. 44-46). Ahlbertz & Forsberg (2021) found that their

represented people diagnosed with depression as non-functioning, codependent, unreliable, passive and suffering, which contrasted the ideal “healthy” individual who was portrayed as diligent, high-functioning and 14 independent, creating a dichotomy of health and sickness which ultimately simplifies the human experience (Ahlbertz & Forsberg, 2021, pp. 21-26). My contribution to this field lies in analysing the Socialstyrelsens guidelines for endometriosis, which when writing this remains an under-researched topic, at the same time as endometriosis is an emerging social issue in Sweden. 4. Theory This chapter describes and discusses the theoretical framework of the thesis, consisting of six subsections. The first five describe the different parts of the theoretical framework, addressing discourse and biopower, contemporary workfare theory, queer theories of sex and gender, feminist bioethical perspectives as well as writings on sociology of chronic pain. In the last subsection, the operationalisation of the theoretical frameworks for analysis is described. 4.1 Discourse and Biopower Because of this thesis’ theoretical and methodological basis, it might be useful to give an initial description of the term discourse, using the definitions originated by Foucault. Discourse can be defined as structures of language, usually materialized as texts or speech, which determine assumptions about subjects and the contexts they exist in (Foucault, 1972, pp. 37-38). Because language functions socially, made and furthered by participants of certain discourses, these normative assumptions become constitutive of social realities through varying forms of human interaction (Foucault, 1972, pp. 37-38). Discourse gains power in its proclamation of truth, making its assumptions appear as

and therefore also making contradictions to its definitions appear as categorically false and/or intelligible (Foucault, 1977, p. 27). Foucault highlights the need to critically examine these powerful structures of language, in spite of being subjects defined by them (Foucault, 1972, p. 22), which makes critical analysis of discourses appear both as possible and necessary to understand the ways in which language explicate, exclude and invisibilize. Foucault’s theories on biopower deploys the logic of discourse theory to explain how state institutions' power over life, death and the body have been central in the development of capitalism (Foucault, 2002, pp. 141-142). He explains how the state’s power over life and 15 death, formerly performed mostly through methods focused on bodily punishment, have been replaced by disciplinary devices which conditions the body to act according to state ideals and submit to its power (Foucault, 2002, p. 141). Through school curriculums, medical institutions and military service, the state performs what Foucault identifies as “biopower”, making populations behave, reproduce and appear in ways which uphold the status quo and reproduce modes of productivity (Foucault, 2002, p. 142). These theories explain how institutions with power condition people in ways that uphold current discursive orders, which becomes useful in order to understand the ways in which my material, produced by a powerful Swedish institution for public health, describes endometriosis patients, their needs and their embodiments. 4.2 Workfare Connecting to Foucault's discussions on biopower and state mechanisms for population control, I have chosen to develop this thesis’ theoretical framework by deploying theories on workfare. Workfare refers to an overarching trend in welfare policy in Europe and the United States since the 1990’s, where activation requirements as eligibility requirements for welfare services such as benefits are becoming increasingly popular (Lodemel & Moreira, 2014, p. 2). This trend is referred to as an activation paradigm, which is informed by policy makers willingness to capitalize of public ideas which view poor and unemployed individuals as a burden for society, who’s obligation to seek employment and become economically contributing citizens overweighs their rights to basic income, housing and other welfare services (Gubrium et al., 2014, p. 344). Developing the term workfare, Soldatic & Meekosha (2012) discuss the ways in which disability, class and gender inform spaces of workfare. They write that spread of neoliberalism in the West has contributed to an increased integration of workfare logics in welfare practices, which are tied to the moralisation of worklessness (Soldatic & Meekosha, 2012, p. 142). Disgust is identified as a main characteristic of this neoliberal moralisation, informed by class relations, gendered divisions and ableist structures of society which labels some as abject beings worthy of disgust. In the abjection of some, who become sources of disgust from those who aim to embody liberal middle-class normalcy, workfare becomes an expression of oppressive cultural imperialism (Soldatic & Meekosha, 2012, pp. 142-143). 16 State institutions capitalizing off these public ideas of moralisation and disgust, materialize through emphasis on the activation of populations when dealing with welfare issues, like healthcare, making it relevant for my thesis. Workfare logics are common in neoliberal nations in the global north (Lodemel & Moreira, 2014, p. 2), including Sweden, making it relevant for the locus of my material. 4.3 Sex, gender and the body I consider Judith Butler’s theories on the sex, gender and the body as a useful development of Foucault’s framework of discourse and biopower. In their book “Bodies that matter - on the discursive limits of sex” (2011) Butler aims to identify the normative aspects of “sex” as a category, to nuance the dichotomy of sex as

and definite, and gender as socially constructed and fluent. Sex is instead considered as greatly influenced by discursive norms, since bodily functions related to sex are often interchangeable with certain categories of embodiment (Butler, 2011, pp. xi-xii). Bearing child, producing semen, developing breasts and having testicles are not viewed as merely

functions of the body, but also signals of femininity and masculinity, signals which have been discursively projected onto the bodies it wishes to define. Sex is also referred to (in Foucauldian terms) as a “regulatory ideal”, meaning that it serves the function of assuring that definitions of the body contribute to productive power, through the reproduction of the labour force (Butler, 2011, pp. xi-xii). We can therefore identify a connection between gender, sex and modes of reproduction, motivating institutions of power to uphold normative definitions of the body to insure its proliferation. Through institutions powerful processes of defining, bodies which do not make sense according to the heterosexual matrix are systematically excluded, making them “abject beings” (those who exist outside of the domain of intelligible subjectivity) (Butler, 2011, pp. xi-xii). Butler means that it is this very exclusion that the furthering of normativity rely on, where abject individuals become the deviant which defines the natural and normal. Butler’s theories help explain the social aspects of sex, which act as markers of intelligibility. This can assist a critical analysis of my material, and contribute to an understanding of how it might uphold or contradict discursive formations of sex and gender, which ultimately shape who is considered as a valid care seeking subject for endometriosis healthcare. 17 4.4 Feminist Bioethics Feminist bioethical theory relies on the notion that the field of medicine is interlinked with oppressive structures of marginalisation, making it relevant to perform feminist critique of healthcare practices and policies (Rogers et al., 2022, pp. 18-19). This feminist critique serves the purpose of elucidating the ways in which utilitarian ideals of healthcare practice are compromised by social relations of power (Lindemann, 2022, pp. 18-19). In “Handbook of Feminist Bioethics” (Rogers et al., 2022) several themes relevant for this thesis are discussed, which I make an account for below. In her chapter “Toward a Queer Feminist Bioethics of Sexuality” Tiia Sudenkaarne discusses the importance of utilizing queer understandings of sexuality and gender in theories of bioethics, in order to avoid the furthering of hetero/cis-normative notions within feminist critique (Sudenkaarne, 2022, pp. 167-168). The writer explains how “morality tales” (understandings of gender and sexuality which are the foundation of moral beliefs regarding health and the body) often inform health-care policy in ways that exclude and criminalize behaviours and identities which do not conform to normative expectations (Sudenkaarne, 2022, p. 167). She uses examples of policies which connect homosexuality with HIV, advocate for abstinence instead of birth control etc., to illustrate how ideas of sexuality and identity inform the ways healthcare policies are formulated. Critiquing the normative assumptions which shape these policies becomes a project that does not only engage in the inclusion queer people (by taking discrimination toward them seriously and aiming to change discriminatory frameworks), but a project that aims to expand limiting descriptions of human embodiment and experience which ultimately affects everyone (Sudenkaarne, 2022, p. 168). This chapter provides a critical queer perspective on healthcare policies, which contextualizes theoratizarions of sex and gender in the field of medicine. Ilke Turkmendag addresses the role of reproduction in the shaping of women's health issues in her chapter “Exploitation and control of women’s reproductive bodies” (Turkmendag, 2022). She explains how social assumptions which centralize fertility and reproduction in women’s health issues tend to reinforce maternal stereotypes for women, furthering the idea that the main purpose of their body is to create, give birth to and nurture a baby (Turkmendag, 2022, p. 487). She notes how fertility related treatments are interconnected with these limiting norms, as modes of biopower focused on women's reproduction 18 (Turkmendag, 2022, p. 488). Turkmendags framework is useful to understand the role of fertility and gendered embodiment in my material. Although Turkmendag addresses women specifically, the issue of centralizing fertility when dealing with the healthcare of feminized bodies will also have social and medical consequences for people who do not identify with the label woman, since (as noted above in accounts of previous research) endometriosis healthcare is a highly feminized medical field. Finally, in Arienne Shahvisi’s chapter “Toward an Anticolonial Feminist Bioethics”, the issue of decolonizing feminist bioethics is discussed. The writer defines decolonizing as a practice which aims to eradicate colonialism and colonial logics from all aspects of global society, demanding a pervading critique and awareness within academic disciplines (Shahvisi, 2022, pp. 209-210). Feminist bioethics focuses on the experiences and representations of marginalized groups within healthcare, but still often fails to account for nuanced experiences affected by other subjectivities than gender and sexuality (Shahvisi, 2022, p. 210). The discipline therefore needs to employ an anticolonial perspective, which allows complicated and intersecting experiences and embodiments to exist and be described, and which understands how the oppression of people of colour and the Global South are interconnected with normative assumptions regarding gender, sexuality, class etc. (Shahvisi, 2022, pp. 210-211). It is by understanding the connections between issues such as forcefully gendering bodies within medicine and colonial expectations and definitions of gender, that we can utilize the subversive potential of feminist bioethics, an understanding which informs this thesis. 4.6 Sociology of chronic pain Endometriosis is a disease largely characterized by pain, motivating me to utilize a theoretical framework which focuses on the individual as well as societal aspects of pain experiences. The article “Sociology of chronic pain” (Zajacova, Grol-Prokopczyk & Zimmer, 2021) summarizes the theoretical field of Sociology of chronic pain, one which met the requirements of a theoretically nuanced framework. It describes pain as not only an individual experience of suffering and discomfort, but an issue which is connected to social issues of discrimination and inequality, ultimately shaping whose pain is taken seriously, what pain becomes chronic and how patients who experience pain might be treated by the healthcare system (Zajacova, Grol-Prokopczyk & Zimmer, 2021, p. 303). By applying a sociological lens to studies of pain, researchers can counter an individualizing view of pain 19 experience with nuanced frameworks of how societal processes shape pain and vise-versa (Zajacova, Grol-Prokopczyk & Zimmer, 2021, p. 303). 4.7 Operationalisation In this section I briefly describe how the different elements of theory will be implemented in analysis. Foucault's theories on discourse and biopower aid understanding of Socialstyrelsens powerful position, as a state institution with great power over bodies, reproduction and health. Theories on workfare locate biopower in current activation paradigms in Europe, and Butler’s theories on sex and gender aid understanding of how Socialstyrelsens descriptions of bodies relates to the heterosexual matrix. Feminist bioethics provide a critical view of the ways Socialstyrelsens recommendations for healthcare address and relate to issues of healthcare discrimination, and how they might reinforce colonial ideas of western medical superiority. Finally, sociology of chronic pain provides a critical lens for Socialstyrelsens descriptions of pain, its causes and suggested measures. 5. Methodology, methods and material Onto this thesis methodological framework and related discussions. This section includes four sections. The first section includes contextual descriptions of Socialstyrelsen and their guidelines for endometriosis healthcare, whereas the second one describes and discusses Fairclough's discourse theoretical methodology. Feminist critical discourse analysis and its operationalisation in this specific thesis are described in the third section, and the last section includes discussions on ethics and reflexivity in this research project, related to feminist discussions on the topic. 5.1 Material In this section I present the material chosen for the thesis: Socialstyrelsens guidelines for endometriosis. I also include a

to Socialstyrelsen as an institution, as well as their role in Swedish society. Lastly, I motivate my choice of material, and why it is deemed appropriate for feminist analysis. Socialstyrelsen (The National Board of Health and Welfare in Sweden) has a wide array of responsibilities, one of them being to provide guidelines for specific healthcare concerns, which are used in the decision making of medical executives and practitioners in the whole 20 country (Socialstyresen, 2023). National guidelines for healthcare were introduced in 1996, with the motivation to increase the quality and knowledge base of healthcare practice (Edhag & Eriksson, 2018, p. 133). Recommendations in the guidelines are not conclusive for practitioners, but are instead meant as guiding principles for individual patient encounters and treatment plans (Edhag & Eriksson, 2018, p. 133). The guidelines are written in correspondence with current research, and are done to assess the current functionality of relevant healthcare services as well as to give recommendations for how treatments should be provided, with the overarching goal to create good and equal healthcare for all (Socialstyrelsen, 2023). The material for this thesis is Socialstyrelsens guidelines for the reproductive disorder endometriosis (Socialstyrelsen, 2018). The guidelines were published in 2018, and are the first guidelines for endometriosis produced by Socialstyrelsen. It is a roughly 100 page long document, constituted by three main sections. The first section introduces endometriosis by describing symptoms, presenting data as well as current issues within the healthcare sector. The second part contains the 32 medical recommendations implemented to improve current endometriosis healthcare, and the third part consists of evaluative discussions regarding economic perspectives as well as ethics and inclusivity (Socialstyrelsen, 2018). Its descriptions and

are based on 39 key sources like scientific reports, former related guidelines and statistical data. I choose this material because of Socialstyrelsens' powerful position in Swedish society, as a primary source for knowledge production concerning healthcare and disease. This makes the institutions guidelines correlated to how healthcare is practiced, while simultaneously being of large discursive significance for understandings of disease and patient demographics. Analysis of the guideline’s innate logics and connotations become relevant for understanding the discursive formations regarding endometriosis, healthcare and patient priority which exist in Swedish society, and how they might be reinforced or contradicted in institutional material. By analyzing the social aspects which inform endometriosis, and how these are dealt with in the material, the choice of

is given a feminist focus. 5.2 Methodology For this thesis I have chosen a critical discourse theoretical methodology consisting of Fairclough's development of Foucault's methodological framework. This was deemed as 21 appropriate considering my materials' powerful position as state mandated guidelines, and considering my interest in the discursive elements that institutional descriptions of reproductive functions and bodies rely on. In this section I explain Faircloughs methodology. Critical discourse analysis was coined by Fairclough as a development of the Foucauldian discourse analysis, with a linguistic focus in contrast to the more broad stroked and historical focus of Foucault (Fairclough, 1995, p. 7). Although language is central in all poststructural methodology, CDA situates itself in the tradition of linguistics which makes its focal point on how specific grammatical constructions reinforce, contradict and produce formations of discourse (Fairclough, 1995, p. 11, p. 19). The goal of critical discourse analysis is to “denaturalize” discursive assumptions, referring to the practice of critically viewing texts and their connotations, in order to localize its logics as reliant on ideological claims rather than being objectively truthful, naturalized “common sense” (Fairclough, 1995, pp. 27-28). Fairclough develops this by highlighting the boundaries and relationships between different discourses (Fairclough, 1995, pp. 12-13). Through sociocultural change, discourses evolve in various degrees and might grow to reinforce each other or exist as oppositional (Fairclough, 1995, pp. 12-13). This shows the moldable relationship that discourses have on each other, as well as the possibility of contradictions within discourses made through these synergies. The term intertextuality refers to this phenomenon (the interlinkage of discursive formations), which highlights the relevance of contextualizing and historizing texts in order to fully understand them (Fairclough, 1995, p. 11, p. 19). 5.3 Method 5.3.1 Feminist critical discourse analysis To operationalize the above stated methodology, feminist critical discourse analysis is applied to my

using the three dimensions of critical discourse analysis, which structures the analysis. Below I describe the different steps of CDA analysis, as described by Burnett (2024), as well as the feminist operationalisation of my methods. Step 1 of critical discourse analysis focuses on the concrete language of the text, where you aim to describe its semantic constructions as well its references/connotations in order to decode the language use (Burnett, 2024, p. 370). Here the analysis is quite zoomed in, placing 22 emphasis on specific formulations in the text (usually illustrated through quotes). Intertextual connections are made, connecting quotes to larger discursive formations of language. In order to understand the semantic themes and their connotations, the reader is required to be informed on the context in which they are produced (Burnett, 2024, p. 370). Before step 1, the so-called step 0 of analysis is therefore done through reading the

thoroughly and educating oneself on the context it was written in. In Step 2 , you zoom out to interpret the text's linguistic structures as part of discursive practices, where knowledge claims are contextualized in relevant social, historical and ideological settings. This is done in order to understand how the text’s logics might reinforce institutional arrangements and social roles, or questions them (Burnett, 2024, p. 370-371). It also addresses what ideologies are invoked in the text, and what knowledge claims are made either implicitly or explicitly as well as identifying conflicting discourses and how they interact with each other (Burnett, 2024, p. 370-371). In Step 3 you aim to explain the sociocultural significance of the text, in order to discuss what the text is written to accomplish and who benefits from its claims (Burnett, 2024, p. 371). Here you also ask yourself if the text aims to justify current social or political orders, and who might suffer negative consequences from the reinforcement of these systems (Burnett, 2024, p. 371). In this thesis I have chosen a feminist critical discourse analysis, referring to feminist reformulations of Fairclough's original methodology where emphasis is put on critically examining linguistic structures which furthers the oppression of marginalized groups and individuals (Burnett, 2024, p. 363). Elsbeth Tilley explains in her article “Feminist discourse analysis” how the general power critical position of discourse analysis goes hand in hand with feminist goals of emancipation, making it compatible for feminist methodologies which aim to assist intersectional struggle for justice in society (Tilley, 2018, p.1). The main

of feminist CDA therefore goes hand in hand with the aim of this thesis: furthering the inclusion of the social perspectives of marginalized groups within healthcare. 23 5.3.2 Operationalization CDA is operationalized in this thesis through a thematic analysis of my material, which is produced inductively. Through thorough readings of the textual material, I initially code the text of its central themes, which is then map out and presented in different thematic sections of analysis, containing mostly qualitative data but also some quantitative elements. In these thematic sections I then conduct analysis using the three steps of CDA: describing the semantics of the themes through discussions of specific quotes and/or quantifications, interpreting and contextualizing the theme’s discursive logics and explaining the sociocultural significance of the themes. Excerpts from my

are translated from Swedish to English, to make these more accessible to the reader and to promote language consistency in the thesis. I use some terminology in the thesis which might be favourable to define. Endometriosis is at times shortened to endo-, mostly for variation purposes. To refer to patient groups for endometriosis, I primarily use the gender-neutral formulation ‘people with endometriosis’. I choose not to use the term uterus bearer and people who menstruate, despite the central role of the uterus and menstruation in endometriosis. This is because hysterectomies (surgical removal of the uterus) is performed as treatment for endometriosis, as well as part of some trans and intersex patients gender affirming treatment, meaning that not all endometriosis patients have a uterus. Menstruation usually disappears when one has had a hysterectomy, and some patients do not menstruate for other reasons, such as birth control or hormone therapy, motivating me to not use the term ‘people who menstruate’ either. When discussing gender and endometriosis, I also use the term ‘feminized’, referring to the practice of labelling subjects as women or female-adjacent. based on societal expectations on gender & sexual difference. Feminization therefore includes all those who are assumed to have certain needs and traits because of the social roles projected onto them. 5.4 Ethical considerations In this thesis, my empirical data does not concern research subjects and/or sensitive personal information, which makes ethical considerations in relation to storage of data and relationships to participants of little relevance. However, in the

and literature review I do include testimonies of experience, but since these are either made anonymous by researchers or published publicly by news outlets, the information is not considered as 24 sensitive. Instead, this section focuses on reflexivity as a feminist approach, and how this shapes the ways I deal with the topic of endometriosis in my thesis in relation to my own positions and experiences. In feminist tradition, reflexivity is often highlighted as a central practice for ethical research. Harraway spoke of avoiding the “god-trick”, referring to a critical awareness in feminist research towards enlightenment ideals of an all-knowing, unbiased researcher whose human qualities of partisanship do not bleed into the

of scientific work (Harraway, 1988). Instead, reflexivity becomes a practice of recognizing one’s own positions in society as to remain transparent towards the biases, privileges and experiences that will ultimately shape the knowledge that one’s research projects produce (Gunaratnam, 2024, pp. 134-136). Although reflexivity as an idea proposes a systematic questioning of methodological privilege, academic elitism and unequal power dynamics, the claim of doing reflexive research is not enough. Since reflexivity is a broad concept, it can be weaponized to justify lack of responsibility for voyeuristic, assumptive and outwards problematic ways of conducting science, in the name of self-critique and introspection (Gunaratnam, 2024, pp. 132-135). It is therefore key to distinguish what reflexivity should do with research, to not let it become an outlet for brief egocentric reflection on one’s own privileges but instead an all encompassing research approach (Gunaratnam, 2024, pp. 132-135). One key element of this is to let reflexivity as an approach bleed into all aspects of the research project, and to let responsibility over one’s positions consequently inform the scientific choices that are made in the process of writing, reading and collecting (Gunaratnam, 2024, pp. 136-137). It is also important to allow positions to remain fluid, and to understand how one’s experiences both differentiates and relates to that of research participants and material, as to not contribute to rigid and limiting constructions of identity which ultimately denies the fluidity and diversity of embodiments (Gunaratnam, 2024, p. 131). Feminist reflexivity is therefore equipped in this project as a toolbox present in all aspects of the thesis, as I try to navigate my own ambivalent positions in relation to my scientific choices. Endometriosis is an under researched topic, at the same time as vast amounts of knowledge regarding the disease exists in spaces outside of academia. It is important to highlight the limits of the knowledge that my

can produce regarding endometriosis, given the 25 scope of this project as a student master thesis. Conducting work on bodies also poses the ethical dilemma of inclusion, especially since endometriosis is a highly feminized field. I aim to use gender inclusive language, to include all patients of endometriosis healthcare and further the importance of intersectional inclusivity. This sometimes means using gender neutral terminology, and at other times giving an account for how gendered identities shape endometriosis experience. I also deal with this dilemma by aiming to provide postcolonial perspectives on the issue of endometriosis inequality, but I acknowledge that the prevailing struggle for inclusion of bodies is not something which this essay ultimately can completely distance itself from. Writing on endometriosis as someone who does not experience the disease myself is something that pushes me further from the experiences of which I wish to centralize in my institutional critique, at the same time as experiences of menstrual pain, not being taken seriously by medical practitioners and existing as a queer woman within medicalizing structures is something I can relate to emotionally through lived experience. As someone who does not have experience of being racialized, who conducts research from the global north, it is especially important that I remain critical towards reproducing colonial ideas of bodily standards, rigid identity and western medical superiority, at the same time as my ability to transverse these structures are limited, which together with my lack of experiences of endometriosis highlights the need for more critical research done on the topic from other lived experiences than my own. 6. Analysis: tracing the social in the medical In this section I analyze Socialstyrelsens guidelines for endometriosis. The guidelines contain three primary sections: first, an introduction, which describe the overall goals of the guidelines and a summary of the current state of endometriosis healthcare, second, the concrete healthcare recommendations made to improve current medical services (with a total of 32 recommendations), and third, a final part which includes economic models as well as discussions on ethical considerations and inclusivity. The findings from the material are thematically described, analyzed and discussed using feminist critical discourse analysis as well as the theoretical framework described above. Critical discourse analysis consists of three steps, which will organize the sections below. 26 Step 1 focuses on semantics and the language used in the guidelines, whereas step 2 and 3 zooms out and takes into account the discursive context and sociocultural significance of the text. The analysis primarily focuses on qualitative data, and brings in some quantitative aspects relevant in the empirical material. All the included quotes have been translated from Swedish to English by myself. Themes in the analysis emerged through a close and systematic reading, drawing upon tools from critical discourse analysis, and the concepts and theories from the theoretical framework. The main aim of the thesis is to examine the social aspects embedded within medical discourse around endometriosis. Therefore, feminist critical discourse analysis enables this thesis to explore the following themes: (a) The centrality of fertility; (b) Access to care & pain - whose pain is taken seriously?; (c) Cost efficiency and workfare - patients in the realm of the neoliberal order, and (d) Gendered ambivalence - Who is the patient group for endometriosis?, which are discussed below. 6.1 The centrality of fertility Although Socialstyrelsens’ guidelines for endometriosis do not include treatments for infertility (Socialstyrelsen, 2018, p. 10), fertility is a relevant aspect of endometriosis, considering that many who seek healthcare for the disease also seek care for fertility preservation purposes (Socialstyrelsen, 2018, p. 12; Kalaitzapopulus et al., 2021). Fertility is also interlinked with reproductive roles and stereotypes, especially for women and feminized individuals. This theme analyzes the role fertility plays in Socialstyrelsens guidelines for endometriosis. This theme will initially be explored focusing on semantics and language. When motivating the significance of treating endometriosis symptoms in the

of the guidelines, Socialstyrelsen writes: “Early onset treatment of suspected or confirmed endometriosis likely has large significance for fertility preservation and counteracting the risk for chronic pain” (Sociastyrelsen, 2018, p. 11) (my translation and emphasis) 27 “This normalisation of sometimes severe pain, leads to delayed treatment and diagnosis [8]. This in turn increases the risk for chronic pain, and likely also affects fertility negatively ” (Socialstyrelsen, 2018 p. 13) (my translation and emphasis) Here, fertility preservation and managing chronic pain are centralized as the two main goals of endometriosis treatment. Fertility is also brought up several times in the medical recommendations which discusses surgery and psychiatric evaluation as treatment options: “Mental health is also likely affected by difficult pain conditions, which affect sleep, everyday life, sexual function, fertility and the general quality of life” (Socialstyrelsen, 2018, p. 42) (my translation and emphasis) “Often endometriosis surgery entails specific challenges. These are identified by technical difficulties, risk of affected fertility and difficulties to identify endometriosis foci” (Socialstyrelsen, 2018, pp. 43-44) (my translation and emphasis) “Healthcare services can also offer surgical removal of the uterus and ovaries to people with endometriosis and long term treatment resistant pain without wishes of pertained fertility. It is crucial for this recommendation that the case is especially severe ” (Socialstyrelsen, 2018, p. 45) (my translation and emphasis) When evaluating the risks of surgical treatment options, Socialstyrelsen states: “Endometriosis can entail more or less acute states, which can make it difficult for the patient to receive information and be involved in the treatment. Some surgical treatments also affect fertility negatively . It can therefore be important to let such treatment choices take good time” (Socialstyrelsen, 2018, p. 78) (my translation and emphasis) “Incomplete endometriosis-surgery entails that the surgeon does not remove or destroy all prevalent endometriosis at the time of surgery. This can be a conscious choice to reduce risk or preserve fertility ” (Socialstyrelsen, 2018, p. 94) (my translation and emphasis) 28 These quotes convey a centralising approach to fertility in the document, being one of the main factors considered both when motivating, suggesting and evaluating treatment options for endometriosis. Fertility preservation is a common concern for endometriosis patients, being one of the most prevalent causes for seeking care according to former research (Kalaitzapopulus et al., 2021, p. 7) and Socialstyrelsen themselves (Socialstyrelsen, 2018, p. 12). It is therefore logical that fertility emerged as one of the themes in my readings of the guidelines, at the same time as fertility is a complicated concept interlinked with social factors of oppression, especially for women and uterus-bearers, making it relevant for analysis. From a feminist critical discursive lens it can be observed that although Socialstyrelsen centralizes fertility while discussing treatment options, they do not centralize the social factors which might inform how fertility is dealt with in healthcare settings. Turkmendag states in her bioethical theories on reproduction, that centralization of fertility in the health issues of feminized patient groups risks reproducing certain stereotypes about patients. Framing guidelines without social assumptions in mind, may contribute to healthcare professionals paying attention and factoring in fertility and reproductive qualities as the most important function of feminized bodies, which can in turn harbour gendered practices within healthcare (Turkmendag, 2022, p. 487). The primacy associated with reproduction, especially when women and feminized individuals seek healthcare, can overemphasise reproductive capacities as the central goal of uterus-related healthcare. These tendencies highlight how prevalent notions of the heterosexual matrix shape guidelines for public healthcare (Turkmendag, 2022, p. 487; Butler, 2011, pp. xi-xii). Even though ideas of reproduction within heterosexual matrix are mostly directed at women, centralizing fertility in endometriosis can also create unaccounted hindrances queer uterus-bearers when they seek medical care. As media testimonies of endometriosis experience shows, social assumptions on fertility plays a part in healthcare discrimination, some patients being told that “the only way to fix it is through pregnancy” (McCann, 2025). Former research shows how endometriosis clinicians tended to focus on fertility instead of patient needs (Eder & Roomaney, 2024, p. 914), and equated their patients to their reproductive functions (Young et al., 2018, pp. 349-350), displaying how discursive ideas projected onto feminized subjects have negative 29 consequences on experiences of medical services, motivating a need to address the social expectations of fertility in the guidelines. What are the implications of Socialstyrelsens descriptions of fertility? Due to Socialstyrelsens’ position in Swedish society, they have great discursive power over medical discourses of fertility and gender, also giving them responsibility to ensure that their guidelines and healthcare recommendations contribute to their goals of equal healthcare for all, which requires addressing the social factors which are embedded medical practices. Therefore, by not identifying social factors that affect medical views on fertility, the risk for discriminatory and stereotyping encounters within endometriosis healthcare related to fertility is not dealt with comprehensively enough. Socialstyrelsen is therefore at the risk of not addressing how healthcare settings reproduce ideologies of reproduction, which can be damaging for women and feminized individuals. The medical sector produces especially potent versions of these ideologies, considering their primary role historically in moderating populations' bodies, behaviour and morale through biopower (Foucault, 2002, p. 142), making Socialstyrelsens address of social aspects of fertility especially relevant, to ensure that medical authority over populations is not used in discriminatory ways. 6.2 Access to care and pain - Whose pain is taken seriously? Now onto the theme of access to care and pain. Endometriosis is a disease largely characterized by pain, being the most common symptom of the disease (Socialstyrelsen, 2018, p. 11). This section analyses the ways the document deals with the concept of pain, as a threshold symptom to receive treatment, as well as the question “Whose pain is taken seriously?”. How does Socialstyrelsen describe the issue of pain? They state that one of the largest issues in endometriosis healthcare is the misinterpretation of pain-symptoms. When discussing such misinterpretations, they state: “Symptoms being misinterpreted is often related to ignorance regarding endometriosis both from care seekers and care givers” (Socialstyrelsen, 2018, p. 13) (my translation) 30 Ignorance and a general lack of knowledge regarding endometriosis is therefore framed as a large contributor to misinterpreted symptoms, which is also brought up later in the document when discussing young people with endometriosis: “A challenge for young people is that severe menstrual pain is normalized by people in their surroundings, both by close family and friends and healthcare professionals. The normalisation usually happens because of a lack of knowledge : Many still think that there is not much to do about menstrual pain” (Socialstyrelsen, 2018, p. 81) (my translation and emphasis) The connection between normalisation of pain and lack of knowledge regarding endometriosis is recognised by Socialstyrelsens guidelines, as seen in the quotes above. Socialstyrelsen also notes the importance of taking patients pain seriously: “A person's experience of pain should never be doubted, and subjective experience can not be questioned, but should instead be understood from the patients conveyed experience” (Socialstyrelsen, 2018, p. 80) (my translation) “In addition it is important to meet patients with respect, care and to be perceptive of contributing causes for the pain and the current psychosocial situation” (Socialstyrelsen, 2018, p. 38) (my translation) In these quotes Socialstyrelesn highlights the importance of respecting subjective experiences of pain, indicating an open approach to pain assessment. At the same time, all except one of the 32 healthcare recommendations are targeted only at severe or especially severe cases of the disease, including the right to receive expert healthcare, early onset treatment and structured follow-ups of treatment plans. Socialstyrelsen motivates this by stating that: “...healthcare should prioritize those with the largest need for care ” (Socialstyrelsen, 2018, p. 79) (my translation and emphasis) Here, Socialstyrelsen uses a vague formulation (“largest need for care”) which leaves room for connotative interpretation, something that is discussed further below. Further, when 31 discussing this issue of young people not being able to access endometriosis healthcare, Socialstyrelsen state that: “...Sweden has a long tradition of positive and tolerant attitudes towards young people’s sexuality” (Socialstyrelsen, 2018, p. 79) (my translation) To then write: “There are for example young people who live under honor-based oppression or other family-based control that do not dare to seek care at youth healthcare centres since these facilities are associated with sexual relations and contraceptives” (Socialstyrelsen, 2018, p. 80) (my translation and emphasis) In these quotes, the term “honour-based oppression is used”. Within the Swedish context, such terms are usually associated with violence towards racialized and/or immigrant girls- and women from their family and/or partners, given how it has been used by policy-makers and politicians in the public sphere. This means that quotes above interact with Swedish discourses surrounding race, immigration and family hierarchies, which will be discussed further below. What are the discursive assumptions infiltrating these discussions on pain in the guidelines? Giacomozzi et al. (2024) and other former research suggests that misinterpreted symptoms and diagnostic delay within endometriosis healthcare reflects discrimination against women, trans and intersex people by normalising, trivilaizing and gaslighting their pain symptoms. This suggests that social dynamics play a part in public health care discourse on pain, and can elucidate the implicit assumptions about patients and their communities within the Socialstyrelsens guidelines. Socialstyrelsens mentions that patients' pain symptoms must be taken seriously, using words like subjective experience and psychosocial, which have discursive connotations to care frameworks which encompass how social injustice shapes the ways our experiences are interpreted. One could therefore claim that Socialstyrelsens guidelines tie into ideologies which promote awareness of how social injustices shape subjective experience, providing healthcare professionals with sufficient tools on how to avoid belittling and understating pain 32 symptoms. However, the issue of normalized pain is only generally described in the guidelines, excluding social factors which shape the dismissal of pain-related symptoms in healthcare settings. Given that medical issues affect people with endometriosis differently, generalized frameworks are partially justified, in order to make healthcare recommendations adjustable for individual symptoms. However, discussions following the guidelines healthcare recommendations can still address how the social situatedness of patients (such as class, sexuality, work situation, disability) might negatively affect their healthcare experiences in relation to pain, something that Socialstyrelens guidelines for endometriosis generally lack. This increases the risk of social perspectives on healthcare being invisibilized, a point which has been brought up in former research on their guidelines (Topot, 2010, pp. 70-74). Invisibilizing social factors which shape pain experience is problematic because it excludes important nuances within healthcare discrimination, which need to be highlighted in order to counteract discriminatory practices (Zajacova, Grol-Prokopczyk & Zimmer, 2021, p. 303). As sociology of chronic pain suggests, pain is not merely a physiological condition, but a social phenomenon shaped by structures of oppression (Zajacova, Grol-Prokopczyk & Zimmer, 2021, p. 303). Whose pain is taken seriously, what subjective experience is respected and what pain is left untreated is shaped by hierarchies of power, disadvantaging those at the bottom. Who might be considered as someone “in large need of care” is not an

marker, but rather a threshold shaped by the discriminatory forces that exist in society. Women, trans/intersex people, people of colour, disabled people etc. have historically not been taken seriously for their symptoms. Their expressions of pain have been hystersized, stigmatized and labelled as “dramatic”, undermining their epistemic positions, which is informed by the androcentric, cisnormative, ableist and colonial heritage of the medical sciences, a heritage which discursively informs current healthcare practices, making it relevant to address in current healthcare guidelines. Although they lack nuance and explicitly, the guidelines does briefly mention women and trans people as possible patient groups for endometriosis healthcare, whereas for example racialized patients are not mentioned at all. In order to understand the diverging qualities of social marginalisation, accounting for all forms of healthcare discrimination (going beyond categories of gender and sexuality) is key for dismantling the systems which continuously 33 allow this discrimination to occur (Shahvisi, 2022, pp. 210-211). This ties into the logics of intersectionality, which claim that social oppressions do not exist isolated from one another, but rather that they overlap in nuanced and complicated ways, intertwining them in ways which require critical analysis to not only look at one but many intersecting forms of oppression when discussing social issues (Shahvisi, 2022, pp. 210-211). By not addressing the issues of racialized patients, Socialstyrelsens guidelines weaken its intersectional potential, and might also be at the risk of being blind of racial bias themselves. Quotes above which address “honour based oppression”, could be seen as unproblematic stances for sexual liberation of young patients, and as encouragement for healthcare professionals to stand their ground when dealing with intolerant parental figures. But by stating that Sweden (encompassing the nation as well as those considered as representatives for its values) has a long tradition of encouraging tolerant attitudes towards young people’s reproductive health, it becomes tricky to use terms like “honour-based oppression”, since they indicate social biases related to racialized communities. As Foucault states, discourse relies on assumptions, which constitute how those who exist within discourse view subjects as well as reality as a whole (Foucault, 1972, pp. 37-38). What contexts that “honour based oppression” has been used in previously, determines what these assumptions are constituted by. As mentioned above, “honour-based oppression” is a politically loaded term, used in varying political discourses surrounding the oppression of primarily immigrant and/or racialized women- and girls by their families. With or without intending to, framing young people’s lack of access to endometriosis healthcare as related to “honour-based oppression”, is at the risk of creating biases towards racialized communities, which assumes their resistance towards “modern” and “tolerant” medical services and patriarchal family structures within them, affirming racial stereotypes (Shahvisi, 2022, pp. 210-211). In the context of medicine, biases become especially potent given the colonial heritage of the medical sciences (Shahvisi, 2022, pp. 210-211). By not addressing the social biases which exist amongst medical professionals, Socialstyrelsen is (as previously mentioned) at the risk of increasing delays for diagnosis and misinterpreted symptoms, given these issues linkage to one another according to former research such as Giacomozzi et al. (2024). This displays the importance of intersectional anti-discrimination work in order to mediate issues within the medical sector (Shahvisi, 2022, pp. 210-211). 34 6.3 Cost efficiency and workfare - Patients in the realm of the neoliberal order In this section, I discuss cost-efficiency as a guiding principle in my material, as well as its linkages to workfare, a term referring to neoliberal orders of welfare policy with activation requirements as direct or moral thresholds to access welfare services. When discussing the benefits of endometriosis treatment, Socialstyrelsen writes: “The goal of all treatment of suspected or verified endometriosis is that the patient should attain a good functionality level, with manageable symptoms without substantial side-effects of treatment. For people with pronounced symptoms, treatment often focuses not only on making symptoms manageable, but to make it possible for patients to return to studies, work or other occupations as well as to regain social function and life quality” (Socialstyrelsen, 2018, p. 14) (my translation and emphasis) Here, Socialstyrelsen frames being able to return to one’s occupation and regaining a “good functionality level” as one of the overarching goals together with regaining social function, making symptoms manageable and increasing life quality. To further motivate the guidelines, Socialstyrelsen writes: “Endometriosis entails large societal costs, both direct costs for healthcare and indirect costs through sick leave. These guidelines entail that endometriosis healthcare requires more resources in the short term. The recommendations are however expected to increase the quality of endometriosis healthcare, so that urgent care, inlays and sick leave decreases, which will lower costs in the long run ” (Socialstyrelsen, 2018, p. 8) (my translation and emphasis) Socialstyrelsen therefore justifies the increased short term resources needed because of the guideline requirements, with the lower costs that increased quality of care will lead to in the long run. 35 This is informed by the principle of cost efficiency, from the three principles of priority of the proposition “Priorities within healthcare”: “Equal healthcare is also connected to the three principles of priority which are included in the ethical plattform of the “Priorities within healthcare” proposition (prop. 1996/97:60): the principle of human value, principles of need- and solidarity and the principle of cost efficiency .” (Socialstyrelsen, 2018, p. 79) (my translation) In this quote, cost efficiency is equated with the principles of human value and solidarity, displaying financial priorities of the state. Cost efficiency in this context refers to the general idea of trying to minimize economical losses when planning, executing and evaluating strategies for improvement within welfare, which ties into neoliberal ideologies. Through framing those in need of welfare services as sources of cost, their needs are quantified to make sure that welfare policies are as profitable as possible for the state (Lodemel & Gubrium et al, 2014, p. 344). In quotes above, Socialstyrelsen brings up “good functionality” (attained through entertaining one’s main source of income) as one of the desirable effects of endometriosis treatment, which ties into discourses of workfare. Expressions of disability like sick-leave and inlays are stigmatized by being portrayed as deviant to normal function (Soldatic & Meekosha, 2012, pp. 142-143), when degrees of work absence and inlays might not only be expressions of faulty healthcare services, but articulations of differing abilities of the population. In formations of workfare, activation requirements act as either direct thresholds for welfare services (Lodemel & Moreira, 2014, p. 2) or as indirect moralizing tactics directed towards those who seek welfare services (Soldatic & Meekosha, 2012, pp. 142-143). Socialstyrelsen might therefore, through centering work capabilities in relation to treatment success, reinforce practices where welfare services are gatekept from workless individuals, one’s ability to work is valued over one’s well-being, and where treatment success is measured through activation rates rather than patients emotional experience. What is considered as “good functionality” is also discursively formated, informed by ableist assumptions of work capabilities. Centering “good functionality” as goals of endometriosis healthcare, might therefore reinforce ableist stereotypes of abjection, making those unable to attain societies demands on functionality into abject beings (Soldatic & Meekosha, 2012, pp. 36 142-143). As Soldic & Meekosha (2012) reason, this neoliberal process of abjection is informed by disgust, not only towards the disabled, but towards women, lower-class individuals and others considered lesser deserving of welfare services (Soldatic & Meekosha, 2012, pp. 142-143). Frameworks which allow these feelings of disgust to exist, might reinforce institutional and individual discriminatory practices which do not only deem some as undeserving of welfare services, but unworthy of respect and care. Again, this is not to say that Socialstyrelsen has explicit ableist intentions with their guidelines, but that they through the use of ableist language might reinforce discursive formations which justify mistreatment, informed by ableism. The principle of cost-efficiency is informed by workfare discourse, where policy makers are willing to capitalize off public ideas which consider workless, poor and disabled individuals as an economic burden on society (Lodemel & Gubrium, 2014, p. 344). Socialstyrelsen and the Swedish state can therefore economically benefit from activation paradigms (on the expense of those which might not reach their requirements) which can motivate state institutions' reluctance towards removing the ableism embedded in their arguments. Ultimately, this affects endometriosis patients negatively, considering that the disease (for many) is characterized by chronic pain, which might (even when treated) affect their ability to attain what is discursively considered as “good functionality”, whilst still maintaining their lives and wellbeing. Cost-efficiency might also explain Socialstyrelsen centralizing fertility, as described in the first section in the analysis. Butler theorizes that state institutions utilize biopower to ensure the continued reproduction of the labour force, making fertility preservation a relevant issue for the capitalist economy (Butler, 2011, pp. xi-xii). This might explain why the guidelines skew towards both upholding activation standards as well as fertility preservation, considering that both of these can be seen as strategies aimed at raising nativity and productivity, which is especially relevant considering that Sweden is a country with low birth rates, increasing state interests in higher reproduction of its population. 6.4 Gendered ambivalence - Who is the patient group for endometriosis? This last theme addresses the question “who is the patient group for endometriosis?” by analyzing how Socialstyrelsen uses gendered language to define patient-groups. 37 Socialstyrelsen starts off the guidelines by stating: “Endometriosis affects one in ten women at a fertile age. That means that approximately 250 000 women in Sweden have the disease, but not everyone experiences severe symptoms” (Socialstyrelsen, 2018, p. 7) (my translation and emphasis). Here, on the very first page of the guidelines, women are framed as the only possible patient group for endometriosis, creating a clear image of what demographic Socialstyrelsen conveys as relevant for the disease. When discussing the issue of normalized pain, and diagnostic delay, Socialstyrelsen states: “It is therefore vital to increase awareness regarding the state of primary and student healthcare, to be able to provide care for those girls and women that experience symptoms connected to endometriosis” (Socialstyrelsen, 2018, p. 13) (my translation and emphasis) In this quote Socialstyrelsens affirms their portrayal of endometriosis as a women's issue, by describing all who experience symptoms connected to endometriosis as “girls and women”. And when evaluating current endometriosis healthcare, Socialstyrelsen uses data regarding the treatment of women: “Socialstyrelsen assess that approximately 62 000 women with endometriosis are undertreated and would need basal hormonal treatment” (Socialstyrelsen, 2018, p. 61) (my translation) “Today, approximately 1500 women with endometriosis are operated using laparoscopy” (Socialstyrelsen, 2018, p. 63) (my translation) “Socialstyrelsen assess that approximately 25 000 women with pain have insufficient effects of basal hormonal treatment” (Socialstyrelsen, 2018, p. 63) (my translation) All of the quotes mentioned above are examples of the feminization of endometriosis in the guidelines. Women are mentioned as the only possible patient group, and data used to make 38

regarding current healthcare services only concern women. This is likely informed by a larger governmental investment in “women’s health”, which informed the governmental commission for Socialstyrelsens guidelines for endometriosis: “Socialstyrelsen has been commissioned to produce national guidelines for endometriosis healthcare (S2015/08111/FS och S2016/00846/FS (partially)). The

for this commission is government investment in women's health ” (Socialstyrelsen, 2018, p. 9) (my translation and emphasis) The Swedish government labelling endometriosis as a women’s issue in the quote above, has discursive power over the feminized descriptions made in the guidelines, considering the power governmental officials have over labelling populations. However, Socialstyrelsen state later in the document under the title “norm conscious treatment” that: “Endometriosis is a disease related to the uterus and menstruation. It is often women who are affected, but it is important to note that people with other gender identities or expressions can seek care for endometriosis. It can for example be uncomfortable for a man or a person with a normative masculine gender expression to sit in a waitroom mostly meant for women. It is then important to treat patients with respect and to not question the gender identity of the person who seeks healthcare” (Socialstyrelsen, 2018, p. 81) (my translation) In this quote, Socialstyrelsen points to the hardships that transmasculine people might experience within endometriosis healthcare, referring to the possible discriminatory effects of forceful feminization. But simultaneously, Socialstyrelsen contributes to this feminization by framing women as the only possible patient group for endometriosis healthcare in other parts of the document, as shown in the quotes above, signalling a gendered ambivalence in the document. The gendered ambivalence in the material is furthered by the disperse of gendered language in the document. “Women(s)”, “woman” and “girl(s)” are used in the document 33 times, whereas the gender-neutral term “people with endometriosis” is used 120 times 39 (Socialstyrelsen, 2018). Gender neutral descriptions of patients are more common in the sections which describe healthcare recommendations and quantitative indicators (“People with endometriosis” is used 106 times in this section and “women(s)” is used only 6 times), whereas gendered language appear as more frequent the other parts of the

where endometriosis healthcare is evaluated and contextualized in society (“People with endometriosis” is used 14 times in this section and “women(s)”, “woman” and “girl(s)” is used 27 times). One can dismiss these examples of feminization and gendered ambivalence as simply clumsy attempts at inclusivity, but I think there lies something deeper in these tendencies. Endometriosis is a reproductive disease, related to the uterus, ovaries and menstruation. These are bodily functions which are connected to what is discursively referred to as the “female sex” (including people born with a vagina, uterus, ovaries and XX chromosomes). Butler reasons that sexual function is not viewed as merely biological within the heterosexual matrix, but manifestations of gender, explaining how signifiers of the “female sex” often are considered interchangeable with the social category of woman (Butler, 2011, pp. xi-xii). Although Socialstyrelsen makes attempts at including other gendered embodiements than women, it is likely that discursive ideas of reproductive functions, sex and gender informs their, and the Swedish governments, labelling of endometriosis as primarily a women’s issue. Butler's theories relies on the idea of the heterosexual matrix, an ideology which promotes heterosexuality and binary gender categories as the status quo, infiltrating all parts of society (Butler, 2011, pp. xi-xii). Normative sexuality and gender, informed by the heterosexual matrix, are highly naturalized, making the ideology invisibilized and often regarded as indisputable fact. Therefore, dominant discourses of gender in Sweden does not question that all people with uteruses are women, but promotes it as a fact, which informs the feminization of endometriosis made in Socialstyrelsens guidelines. Discursive formations that question the naturalisation of sex and gender exist in Swedish society, but are subordinate to those that do, especially in medical settings, which might explain their general presence in my material. Although sparse Swedish research has been done on the issue, transnational findings show the prevalence of endometriosis in trans and intersex patient groups, as well as the pressing issue of exacerbated delays for diagnosis within the demographic (Jeffrey et al., 2024, p. 3;Kaltsas et al., 2024, p. 4;Eder & Roomaney, 2024, p. 912;Carvalho et al., 2024, p. 6). Excluding trans-individuals and intersex individuals which do not identify with the label of 40 woman in most parts of the guidelines, therefore not only becomes a violent practice of invisibilizing, but an inaccurate description of reality and trans and intersex people´s need for care. An explanation to what Socialstyrelsen might gain from the process of gendering endometriosis, and why it becomes problematic towards queer patients, can be found in Butler's term “abject beings”. If sex is a regulatory ideal, which ensures the reproduction of the labour force, then upholding the stability of sex and gender becomes a mission of exclusion. Through excluding subjects which challenge the heterosexual matrix (“abject beings”), state institutions under capitalism have historically been able to ensure its continuous existence by pertaining the stability of normative gender and sexuality (Butler, 2011, pp. xi-xii). Socialstyrelsen, as a state institution, might therefore be less likely to question the heterosexual matrix (through comprehensive inclusion of trans and intersex patients), because this matrix has historically benefited and continuously benefits their proliferation. This is not to say that Socialstyrelsen has a clear anti-queer agenda in their guidelines for endometriosis, but rather that they, through enforcing markers of unintelligibility for patients which are not women (by not comprehensively questioning gendered divisions of endometriosis healthcare), further the social marginalisation of queer, trans and gender non-conforming individuals within healthcare. As shown in the introduction, media sources display how the feminization of endometriosis is a source of unsafety, exhaustion and dysphoria for trans-patients (Landry, 2021; Stovicek, 2018; Withers, 2023;Melin, 2025). A Swedish trans man was refused endometriosis healthcare, being told that because he was not a woman he had “nothing to do there” (Melin, 2025), which displays the

effects of the abjection of trans and intersex in the feminized field of endometriosis. So why might gendered language be more common in sections discussing social aspects of endometriosis healthcare than in the medical recommendations? Foucault states that biopower has to do with the conditioning of individuals through state practices of indoctrination, to uphold the status quo (Foucault, 2002, p. 142). In order to indoctrinate you need to gain respect from the public, which state intuitions can acquire through utilizing language which aligns with current discursive markers of intelligibility. Socialstyrelsen can acquire this intelligibility through mostly gendering endometriosis as a women’s issue, which 41 aligns with cis-normative constructions of the body. At the same time, aligning with neoliberal claims of inclusivity through brief mentions of queer patient groups, frames Socialstyrelsen as an institution that prioritizes women’s healthcare, displaying social awareness and progressivity, whilst not challenging cisnormativity comprehensively. Socialstyrelsen can therefore benefit from a progressive image, whilst simultaneously not threatening the status quo of the heterosexual matrix. This aligns the institution with societal morality tales of sexuality and gender, whose strategic exclusion of queer individuals is a prerequisite for state control over reproduction (Sudenkaarne, 2022, p. 167; Butler, 2011, pp. xi-xii). In the sections with medical recommendations and quantitative indicators, Socialstyrelsen might utilize gender neutral formulations (such as “people with endometriosis”) to appear more

and utilitarian in their recommendations for healthcare practices, by excluding gender as a marker that defines patient groups overall. Utilitarian goals of objectivity in the medical recommendations relate to Harraways discussions on scientific positivist tradition, and its usual exclusion of social factors to ensure objectivity standards (Harraway, 1988). In the medical sciences especially, there is a long tradition of positivist claims of objectivity which ultimately bleed into policy-framework which engages with healthcare issues. Therefore, the guidelines use of gender neutral formulations appears as an example of medical utilitarianism, which together with little mention of social factors which inform endometriosis related issues, display the tendency to invisiblize social power relations within utilitarian projects in healthcare settings (Rogers et al., 2022, pp. 18). The inclusive potential in the gender-neutral language is also halted by the fact that Socialstyrelsen genders endometriosis as a women’s issue in almost all parts of the document. Same goes for many of Socialstyrelsens attempts to account for the social in their guidelines: claims of inclusivity are weakened by the lack of depth and consistency in existing discussions regarding social categories which shape patient encounters in endometriosis healthcare. 42 6.5 Suggestions for future endometriosis guidelines “Equal healthcare means that social treatment, healthcare and medical treatment is performed and offered on equal conditions to everyone independent to factors such as personal qualities, residence, age, gender, disabolites, education, social status, ethnic or religious

or sexual orientation” (Socialstyrelsen, 2018, p. 79) (my translation) This is expressed in the guidelines as an overarching goal of Socialstyrelsens work with issues related to healthcare. To make sure that the marginalized identities, addressed in the quote above, do not negatively affect healthcare experience, feminist perspectives are relevant for the development of future renditions guidelines for endometriosis. Motivated by the

raised by this thesis, I in this section present suggestions for improvement intended for future versions of Socialstyrelsens guidelines for endometriosis healthcare, so that new renditions can become more aligned with goals of equal treatment in healthcare mentioned above. Firstly, I encourage Socialstyrelsen to use more gender inclusive language. One strategy for this is to formulate future renditions of endometriosis guidelines more openly, with more generalised language regarding patient groups. Another strategy could be to include sections which address relevant patient groups - such as trans youth, intersex people, middle aged patients, racialized patients or workless individuals. In my critique of the feminization of endometriosis, I do not mean to criticize guidelines bringing up the issues women face in endometriosis. However, these descriptions must be accompanied by discussions of the issues that other patient groups face, to ensure that future guidelines are as inclusive as possible. Sections which address patient groups should also aim to be reflexive, by reflecting on how social marginalization might affect the ways professionals deal with and perceive patients. I also encourage Socialstyrelsen to be more reflexive on their own role, as a powerful institution in endometriosis healthcare. By not highlighting the social issues which inform the normalisation of pain within endometriosis healthcare consistently, Socialstyrelsens recommendations become insufficient in combating the issues prevalent in current endometriosis healthcare. They also lack explicit tools necessary for healthcare professionals to utilize in order to deal with their own prejudice 43 (so that it does not negatively affect patient encounters), a critique which is echoed in former research on Socialstyrelsens guidelines for healthcare (Andersson & Kindevåg, 2024, pp. 130-131). I urge Socialstyrelsen to describe strategies for healthcare professionals to deal with prejudice, as to ensure that these do not affect patient encounters negatively through medical gaslighting, discrimination or harassment. Providing critical tools for medical staff could aid Socialstyrelsens explicit goals of minimizing waiting times and misinterpretation of symptoms in endometriosis healthcare, given the linkage these issues have with healthcare discrimination, according to former research (Giacomozzi et al., 2024). For example, when dealing with women who might not want to have children, endometriosis healthcare professionals should be informed on how to deal with fertility preservations whilst not assuming that the patients will change their mind or that wanting to be a parent is “natural”. When dealing with trans- and gender non-conforming patients, healthcare professionals should not assume that the patient will not want to carry a child, or misgender them, because their identity does not fit into the feminized stereotype of a birth giver. When dealing with racialized patients, practitioners should not assume there is going to be a language barrier. Although healthcare discrimination is forbidden by law in Sweden (DO, 2024), most instances end up unreported (DO, 2023), motivating Socialtjänsten to act precautionarily through educating medical staff on anti-discrimination practices. Another example of a relevant exercise for endometriosis health-providers, would be to define and suggest exercises to decrease the prevalence of medical gaslighting, which former research suggests as main characteristic of negative encounters in endometriosis healthcare for women and trans/intersex individuals (Lightbourne et al., 2024, pp. 312), (Eder & Roomaney, 2024, p. 914-916), & (Carvalho et al., 2024, p. 2). Making healthcare professionals aware of their own prejudice, and how it relates to societal modes of oppression, is key to promoting intersectional anti-discrimination work, which is in line with Socialstyrelens overarching goals for healthcare. The last suggestion for future guidelines is to be less restrictive regarding medical recommendations. Being able to access expert medical staff, early onset treatment and structured follow ups of treatment plans are all great recommendations to mend current issues of endometriosis healthcare. But by limiting these recommendations, which would benefit all 44 endometriosis patients, to only severe and especially severe cases of the disease, Socialstyrelsen is at the risk of gatekeeping necessary help from patients based on whose case is considered as severe enough. 7. Concluding discussion Onto the final section of the thesis, containing three subsections. The first section summarizes the analysis and draws

from its findings, as well as relating the findings to the research questions of the thesis. The second section describes suggestions for improvement for Socialstyrelsens future guidelines for endometriosis. Lastly, the third subsection includes my reflections around the research project as well as suggestions for future research on the topic of endometriosis. 7.1 Summary and conclusions In this section, I summarize the findings of the thesis and relate them to the project’s research questions, to then present and discuss

made from the analytical themes. The project's research questions are: 1) How is endometriosis defined in Swedish public healthcare? 2) How can we explore the social aspects of endometriosis by examining Socialstyrelsens guidelines? And 3) How can feminist theories help in conducting a critical discourse analysis of Socialstyrelsens’ guidelines? These were answered through the theoretical analysis of Socialstyrelsens guidelines, whose findings I summarize below. The analysis consisted of four primary themes. The first theme addresses the centrality of fertility, highlighting how fertility is centralized in Socialstyrelsens descriptions of symptoms, treatment and healthcare. It then discusses the lack of social perspectives in these descriptions of fertility preservation, which excludes how the social might influence reproductive stereotypes. In line with Turkmendags bioethical theories, reproductive stereotypes are connected to patriarchal and heteronormative expectations on feminized bodies, and can reproduce oppressional gendered dynamics within healthcare. The second section, ‘Access to care & pain - Whose pain is taken seriously?’, revealed the restrictive attitudes to healthcare recommendations in the guidelines, most only targeted at severe or especially severe cases of endometriosis. Socialstyrelsen highlights the need to 45 respect subjective experience of pain, but does not mention social relations which might compromise whose pain is considered valid and who is considered as in the largest need of care. By excluding social categorisations which shape pain experience, pain gets reduced to individual patients' experiences rather than an issue linked to the larger societal issues of pain and marginalisation, a point supported by theories on the sociology of pain. Socialstyrelsens use of the term “honour-based oppression” is also discursively analyzed, considering its connotations in Swedish political discussions on race and immigration. By not accounting for the social aspects of pain, Socialstyrelsen is at the risk of not adequately preventing further diagnostic delay and misinterpreted symptoms, in line with former research. This highlights the need for intersectional anti-discrimination work to mediate healthcare issues. The third section, ‘Cost efficiency & workfare - Patients in the realm of the neoliberal order,’ discussed how the principle of cost-efficiency informed Socialstyrelsens framing of endometriosis. Socialstyrelsen motivate the higher costs for endometriosis healthcare that the guidelines would require short-term, by the societal economical gain that long-term consequences of improved endo-healthcare (through increased work presence, as well as decreased inlays and sick-leave). Through these logics of cost-efficiency, Socialstyrelsens guidelines tied into logics of workfare, which gatekeeps welfare services from people who do not reach activation requirements, either direct or through moralising practices. Ableist notions which deem some’s functionality as deviant, also tied into Socialstyrelsens logics of workfare. This was illustrated by one of the guidelines goals for patients to regain “good functionality”. “Good functionality” exclude those which, even when receiving proper treatment, might have differing abilities to work considering their endometriosis diagnosis. Ableist notions of workfare are informed by neoliberal notions of disgust, not only affecting disabled people but also women, people of colour and others considered less worthy of welfare services. Socialstyrelsen benefit from these ableist notions of workfare by capitalizing off the notion that people who don’t work are an economic burden on society. The fourth and last subsection, ‘Gendered ambivalence - Who is the patient group for endometriosis?’, discussed the ways Socialstyrelsen gendered patient groups for endometriosis. It found that gendered language was more common in sections that evaluated healthcare services and located endometriosis in society, than in sections describing quantitative indicators and medical recommendations, where gender neutral language appeared as more common. This was suggested as linked to gendered intelligibility and 46 medical utalitarinism, as well as claims of progressivity, partially explaining the gendered ambivalence of the document. Gendering endometriosis as mostly a women’s issue was linked to the heterosexual matrix aswell as cisnormative definitions of bodies and reproductive functions, excluding patient groups which do not identify as women and aligning with discursive moralites regarding gender and sexuality. This furthers the abjection of trans and intersex endometriosis patients, contributing to discriminatory practices and exclusion. To answer the first research question on how endometriosis is defined in Swedish public healthcare, findings show how the disease is defined as primarily a women’s issue in the guidelines, although there are some ambivalent tendencies. Current healthcare for the disease is evaluated på Socialstyrelsen as insufficient, and suggested measures indicate a need for more expert staff. The recommendations in the guidelines are framed as solutions to diagnostic delay, misinterpreted symptoms and also lesser costs societally in the long run. The second research question (How can we explore the social aspects of endometriosis by examining Socialstyrelsens guidelines) allowed me to investigate how the social is both integrated and vacant in the document. Although some social aspects are discussed, marginalized identities are not mentioned consistently enough to aid the inclusivity project posed as the overarching goal of the institution's healthcare policies. The last research question (How can feminist theories help in conducting a critical discourse analysis of Socialstyrelsens’ guidelines?) allowed me to analyze both the mentions and vacancies of social perspectives, revealing insights on gendered ambivalence, formations of workfare and discussions on pain & fertility in the document. Tying all these analytical themes together is the broader tendency of lacking social perspectives in the guidelines. Although some social aspects of endometriosis healthcare are brought up, such as women’s struggles of not being taken seriously for their pain, and trans people’s discomfort while existing in spaces strictly marked for women, the document lacks a pervasive and integrated social perspective showing how complex marginalized identities shape patient experience. Socialstyrelsen has explicit goals of inclusive healthcare services, but persistently genders endometriosis as a women’s issue, which abjects trans and intersex patients and invisibilizes their experiences of the disease. Normalized pain is brought up as a central concern in endo-healthcare, but discussions regarding how social prejudice shapes what pain is taken seriously are vacant. Fertility is central when discussing treatment options 47 and symptoms, but discussions on social expectations on reproduction are idle. Being able to return to one’s primary income source is seen as a primary goal of endometriosis healthcare, but disability as a marginalized identity is not considered. 7.2 My thesis’ contributions This thesis aims to expand the research fields relevant and continue the tradition of critical feminist research of endometriosis. The amount of studies done on people’s experience with endometriosis is extensive, at the same time as it is a historically under researched topic, particularly for trans and intersex people (Eder & Roomaney, 2024, p. 911; Kaltsas et al., 2024, p. 2). Research centering queer and trans and intersex experience of endometriosis in Sweden is especially marginal, further motivating the significance of the queer perspectives in this thesis. This study also provides a unique perspective by investigating not the concrete experience of practitioners or patients, but the guidelines that these experiences are shaped by. By analysing Socialstyrelsens guidelines for endometriosis, material which according to this project's literature review appears as under researched, I aim to further the tradition of critical analysis of Socialstyrelsens guidelines, Swedish institutional policy and critical studies of state practices. This thesis also develops above stated research by providing a discourse theoretical perspective on guidelines for endometriosis health care, examining the language and discursive formations rather than quality of treatment recommendations. It also provides feminist theoretical perspectives on the guidelines, highlighting power relations related to gender, disability, race, work-status etc. 7.3 Reflections and future research When writing this, I am overwhelmed with news of the rise of facism, genocide, anti-trans, anti-immigration and anti-humanist policies in large parts of the world . Emotionally, such political development is hurtful and exhausting, at the same time as I know that the fight for collective emancipation is more important than ever. Legal and institutional infringement of the rights and freedoms of marginalized populations need to be continuously critiqued by scholars and activists, considering their violent and stigmatizing consequences. 48 My thesis is written to support this cause, and to contribute to making future renditions of Socialstyrelsens guidelines for endometriosis more inclusive of the social aspects of healthcare experience. In my critique I do not mean to minimize the importance of the publication of these guidelines. Endometriosis has been historically neglected, and Socialstyrelsen investing in the cause is definitely positive. However, as testimonies of experience indicate, there is still a long path towards inclusive healthcare. Patients continue to be neglected and dismissed, some having to wait more than a decade to receive diagnosis and related treatment. Patients are constantly misgendered, dismissed, stereotyped and misunderstood. To mediate these issues, inclusion of feminist and social science perspectives are vital. It is my wish that the critique raised in this thesis, and other research projects and testimonies on endometriosis healthcare, will change the medical field for the better. Decade long waiting times, lack of expert healthcare staff, medical professionals dismissing excruciating pain as “normal” and systematic misgendering practices are simply unacceptable. Pain is not just experienced physically, but mentally when one is not believed and taken seriously. Minimizing pain is therefore not only a relevant goal for medical treatments, but also for issues of recognition and medical gaslighting. There is great inclusivity potential in future renditions of the guidelines, by expanding how endometriosis is labelled in a gender inclusive and socially aware manner, which would greatly benefit marginalized individuals in endo-healthcare. All those seeking care for endometriosis should be met with respect, knowledge and compassion, which I think improved guidelines can contribute to. Endometriosis is a feminized field, where transphobia and ‘TERF-ism’ (trans-exclusionary radical feminism) are at the risk of informing who is considered entitled to diagnosis and treatment. It was reported in April this year how the UK Supreme court decided that trans women were to be excluded from the legal term woman (Haq, 2025), a decision partially fueled by the lobbying of TERF feminists in the UK context and globally. TERF-ism, just like all prejudice, is fueled by ignorance. In light of decisions like these, it is vital to highlight that women are not less likely to be brutalized, discriminated against and neglected because of the exclusion of trans and intersex individuals, in endometriosis healthcare or anywhere else in society. 49 In the logics of intersectionality, the emancipation of trans-people go hand in hand with elevating misogyny. In the same way that the emancipation of trans and intersex people go hand in hand with dismantling colonial values, racism, and ableism. Our struggles are aligned, not opposing. This project aims to further the importance of intersectionality when dealing with social issues in healthcare. To deal with healthcare discrimination, Socialstyrelsen needs to account for diverging forms of social identities, their hierarchical implications and how it affects healthcare experience. It is only through recognition of existing prejudice in healthcare settings that discrimination issues can be mended, demanding more comprehensive social perspectives in future renditions of Socialstyrelsens guidelines for endometriosis. Future research done on the topic of endometriosis should strive to encompass the experiences of differing patient groups in the intersectional landscape of oppression. More research also needs to be done on endometriosis guidelines, and their role in current issues of endo-healthcare. Considering the issues of long waiting times and overall lacking endometriosis healthcare globally, continued academic work done on endometriosis healthcare is vital to articulate the problems which need to be mended in order to assure healthcare services are effective, accessible and equal for all. 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