{"paper_id":"462a2975-d026-453c-97c3-625861727394","body_text":"Vol.:(0123456789)\nBioSocieties (2026) 21:271–292\nhttps://doi.org/10.1057/s41292-025-00361-6\nORIGINAL ARTICLE\nChronic pain across clinical settings: the changing \nunderstanding of pain and its treatment in endometriosis\nMaria Temmes1  · Elina Helosvuori2  · Venla Oikkonen1 \nAccepted: 16 May 2025 / Published online: 24 June 2025 \n© The Author(s) 2025\nAbstract\nAn ongoing shift toward multidisciplinary pain care and growing emphasis on \nnon-pharmaceutical treatment are reshaping the parameters of how chronic pain is \nassessed and treated. The article explores these ongoing changes through a chronic \ngynecological illness, endometriosis. Drawing on interviews with clinicians, peo-\nple with endometriosis and endometriosis activists in Finland, we ask how pain is \nunderstood and its treatment envisioned in cases where the standard course of endo-\nmetriosis treatment does not alleviate pain. The analysis shows that difficult-to-treat \nendometriosis pain is conceptualized differently at different clinical sites includ-\ning endometriosis clinics, pain clinics, emergency care, and primary care settings. \nWe demonstrate that pain treatment in endometriosis is not fixed but constitutes an \nobject of ongoing negotiations between the patient and clinician. In particular, ten-\nsions arise when patients move between the siloed clinical sites, and their pain is \nre-evaluated and approached through different epistemic framings of pain and pain \ncare.\nKeywords Chronic pain · Clinical encounters · Endometriosis · Medication · \nMultidisciplinary care · Opioids\nIntroduction\nThe parameters of treating difficult, prolonged pain are shifting. Both biomedical \nliterature and clinical practice increasingly highlight that chronic pain does not func-\ntion in the same way as acute pain, which has an identifiable cause, such as tissue \ndamage. In chronic pain, the bodily mechanisms of sensing and responding to pain \nare altered. Therefore, the clinical management of chronic pain is seen to require a \n * Maria Temmes \n maria.temmes@tuni.fi\n1 Faculty of Social Sciences, Tampere University, Tampere, Finland\n2 Helsinki Collegium for Advanced Studies, University of Helsinki, Helsinki, Finland\n\n272 M. Temmes et al.\nholistic “biopsychosocial” approach that addresses biological, psychological as well \nas social causes behind the pain (Cohen et al. 2021; Raffaeli et al. 2021). New treat-\nment guidelines emphasize that the management of chronic pain should involve a \nmultidisciplinary approach to pain treatment that combines both pharmaceutical and \nnon-pharmaceutical care (Cohen et al. 2021).\nThe organization of multidisciplinary pain care is also shaped by societal dis-\ncussions about what constitutes safe pain medication. Public concern about opioid \noveruse and addiction among chronic pain patients has placed pharmaceutical pain \ntreatment under scrutiny (see Gollust and Haselswerdt 2021; Netherland and Hansen \n2017; Parker and Hansen 2022; Stonington 2021). The discussion about opioid \naddiction has, in turn, drawn new attention to non-pharmaceutical treatment of pain, \nwhich is increasingly offered alongside, or instead of, pharmaceuticals (Thomp-\nson-Lastad and Rubin 2020). For example, the Finnish national guidelines for pain \ntreatment emphasize that non-pharmaceutical interventions form the basis for pain \nmanagement, and pain medications, especially opioids, should be prescribed only \nafter careful consideration (Kipu. Käypä hoito -suositus 2017). Yet, it often remains \nunclear how to fully incorporate non-pharmaceutical care into established clinical \npractices (see Thompson-Lastad and Rubin 2020) or how to address chronic pain \npatients’ sudden increases in pain when the available treatment is not effective (see \nStonington 2021).\nThe article explores the challenges in managing severe, persistent pain in multi-\ndisciplinary pain care through a common chronic gynecological illness, endometrio-\nsis. Endometriosis is often described, following clinical statistics, as a condition that \naffects around 10 percent of women globally (Horne and Missmer 2022; Taylor et al. \n2021). It is characterized by the growth of tissue similar to the uterine lining outside \nthe uterus, often in the pelvic or abdominal cavity (Hudson 2021). Endometriosis \npain is typically linked to changes in estrogen levels during the menstrual cycle, \nwhich cause inflammation around endometriosis tissue, and it can range from mild \nto severely debilitating (Hudson 2021; Vannuccini et al. 2022). With the progres-\nsion of the illness over years, pain can be caused by a growing number of additional \nissues. These include endometriosis creating adhesions that tie tissues and organs \ntogether, endometriosis lesions close to nerves or around the gastrointestinal tract, as \nwell as scarring from endometriosis surgery (Vannuccini et al. 2022). Furthermore, \nendometriosis can lead to sensitization of the nervous system, which is character -\nistic of chronic pain (Coxon et  al. 2023). The standard treatment for endometrio-\nsis consists of a hormonal product, which controls the body’s hormone levels and \nsuppresses periods, and widely used painkillers, such as ibuprofen and paracetamol. \nHowever, in difficult cases of endometriosis, these medications may not be sufficient \nto alleviate pain. In such cases, clinicians often recommend multidisciplinary care \nthat includes, for example, physiotherapy to cope with chronic pain (Coxon et  al. \n2023).\nThe article investigates what happens when the management of endometrio-\nsis pain takes place across multiple clinical contexts. Building on Stonington’s \nobservation that pain is “an affective fact that both spills out of the temporal \nbounds of its presence and embroils others in its gravity” in clinical encounters \n(Stonington 2021: p. 236), we trace the ways in which severe endometriosis pain \n\n273\nChronic pain across clinical settings: the changing…\nis enacted variedly as treatable or untreatable in situated clinical practices. Our \nanalysis draws on interviews with people with difficult-to-treat cases of endome-\ntriosis, clinicians treating endometriosis as well as endometriosis patient activists \nin Finland, and ethnographic observations at a specialized endometriosis clinic. \nThrough these data, we trace moments of tension as well as new openings that \nemerge when patients and clinicians negotiate the changing parameters of treat-\ning severe, prolonged endometriosis pain across different clinical settings.\nPrevious feminist research has argued that gynecologists and endometriosis \npatients may have different epistemic frames for pain, which can lead to tensions \nin clinical encounters (Whelan 2003). Whelan (2003) stresses that clinical views \nof pain rely on patients’ descriptions of their embodied experiences. At the same \ntime, the clinical conceptualization of pain is never an “objective reading of pain” \nbut enacted in relation to existing clinical measuring standards for pain (Whelan \n2003). This may lead to potential clashes between patients’ and clinicians’ epis-\ntemic approaches to pain. What we add to this discussion is a further analysis of \nhow pain is conceptualized in the practices of increasingly multidisciplinary pain \ntreatment for endometriosis patients. While multidisciplinary pain treatment aims \nto better account for individual differences between patients, we show that dif-\nferent specialists also enact different epistemic frames for pain. This can produce \ntensions in patients’ pain treatment, making the ideal holistic pain care unattain-\nable. We argue that good pain treatment requires acknowledging the epistemic \nframings that shape the treatment of pain.\nThe article is structured as follows. First, we situate the article within previ-\nous literature on challenges of assessing pain and on clinical encounters between \npatients and healthcare professionals. After introducing our data and methods, we \nmove to the analysis, which is divided into three sections: the first explores con-\nceptualizations of pain in different clinical settings, the second examines negotia-\ntions about treatment between clinicians and patients, and the third focuses on the \nchallenges in offering holistic individualized treatment of pain. Throughout the \nanalysis, we show that clinicians and patients operate with multiple, and some-\ntimes contradictory, conceptualizations of pain, which can lead to tensions in \nclinical encounters. In particular, a distinction between endometriosis pain and \npain that has become chronic is mobilized differently in primary care, specialized \nendometriosis care, specialized pain care, and emergency care settings, giving \nsupport to different models of pain treatment—or enacting pain as untreatable at a \nparticular site. We demonstrate that pain treatment in cases of severe endometrio-\nsis is an object of ongoing negotiations between the patient and the clinician. The \nsiloed nature of treatment makes it challenging to predict how treatment is organ-\nized at another site, causing uncertainty and stress for those living with chronic \npain. As endometriosis patients with severe pain move between clinical sites, the \nquestion of what is adequate yet sustainable pain care may be re-addressed from a \ndifferent clinical viewpoint. While this may lead to a recognition of a previously \ndismissed pain, it may also result in a previously recognized pain being trivial-\nized and the rationale of treatment being challenged.\n\n274 M. Temmes et al.\nPrevious research on pain and clinical encounters\nHow pain should be conceptualized, assessed, and treated is an object of epis-\ntemic struggle across medical practice. The medical definition of pain balances \nbetween personal descriptions of pain experiences and the aim of clinically meas-\nuring the described pain. As the International Association for the Study of Pain \nnotes in their 2020 definition, pain “is always a personal experience that is influ-\nenced to varying degrees by biological, psychological, and social factors” (IASP \n2020). In the clinical context, the measurement of individual pain is done, for \ninstance, in relation to various pain scales that aim to classify the intensity of \npain experience (Robinson et al. 2024). One of the examples of a pain scale is the \nVisual Analog Scale for Pain (VAS scale), in which the patient is asked to evalu-\nate their pain from 1 to 10, that is, from no pain to the “worst imaginable pain” \n(Hawker et al. 2011: p. S240).\nHowever, the datafication of pain does not easily capture the lived and rela-\ntional experiences of pain. In an ethnographic study of a clinical trial examin-\ning phantom limb pain, Middleton (2022) argues that it is pivotal to ask what \ninformation is used to define pain and what, in the process, is left out. Moreover, \nresearchers studying narration of pain have noted that it can be challenging to \ndescribe chronic pain, as persistent pain affects a person’s perception of the sever -\nity of pain (Van Hout et al. 2023; Hovey et al. 2018; Mellor 2023). Furthermore, \nhistorical and social studies approaches to pain have noted that the knowledge and \nexperience of pain is influenced by societal and medicalized approaches to pain \n(e.g., Boddice 2017, 2023; Scarry 1987; see also Seear 2014 on endometriosis \npain). When pain is assessed in clinical settings, it does not happen in a historical \nvacuum, but reflects historically layered ideas of what constitutes pain and what \nkind of pain needs medical attention. Whelan (2009) notes that while the clinical \naim of standardizing the description of endometriosis has historically led clini-\ncians to doubt patients’ descriptions of pain, patients’ symptoms have a key role \nin diagnosis and treatment of endometriosis. Whelan stresses that clinicians form \n“an epistemically flexible, application-oriented epistemological community” as \ntheir approach to patients’ symptoms is formed in relation to their previous clini-\ncal work experience as well as scientific research (Whelan 2009: p. 1495).\nThe medical assessment of pain takes place within clinical encounters between \npatients and healthcare professionals. We approach clinical encounters as situ-\nated and uneven negotiations about adequate care that shape how chronic pain is \nmeasured and conceptualized. Previous studies of the power dynamics in clinical \nencounters stress the need to further develop patient-centered care (Odero et al. \n2020). Our research highlights the tensions that arise in negotiations concerning \npain that is difficult to treat. In clinical decision-making, conflicts may occur as \nmedical authorities as gatekeepers balance between an individual patient’s needs \nand wishes and other aspects of decision-making, such as medical and organi-\nzational demands concerning implementation of evidence-based clinical practice \nguidelines or limited resources (Hilden et al. 2021; see also Sandman and Munthe \n2010). Following Whelan’s notion that clinical encounters can also be sites of \n\n275\nChronic pain across clinical settings: the changing…\n“epistemic co-operation” (Whelan 2003: p. 477), we suggest that the definition of \npain symptoms is always linked to the trust between the clinician and the patient. \nHowever, this trust might be difficult to obtain if there is a disagreement, for \nexample, on what treatment options are medically justified.\nUneven power relations are also manifested in the ways patients are categorized \nand attended to. Based on ethnographic fieldwork in a Danish hospital setting, \nHolen and Lehn-Christiansen (2010) argue that categories such as ethnicity, gen-\nder and class can have a profound effect on clinical encounters, for example, some \npatients come to be seen as more challenging than others. When these patients are \nviewed from the clinical perspective, “the ‘problem’ is never the hospital, nor the \nrelationship between the hospital and the patients. The problem is individualized” \n(Holen and Lehn-Christiansen 2010: p. 57). In other words, clinical encounters \nnot only reflect but also reinforce social inequality, as the problem that the treat-\nment needs to address is translated into a characteristic associated with a patient \ngroup (Sointu 2017). Although our analysis does not focus on intersectionality, we \nwant to acknowledge how factors such as ethnicity and class in addition to gender \naffect the power dynamics in clinical encounters and epistemic struggles around \nendometriosis.\nPrevious studies on endometriosis indicate that the historical framing of endome-\ntriosis as white career women’s disease and the dismissal of women’s descriptions \nof pain continue to limit the access to endometriosis diagnosis and efficient pain \ntreatment (Griffith 2020; Hudson 2021; Jones 2021; Whelan 2009). The medical \nvalidation of difficult chronic pain through endometriosis diagnosis is meaningful \nto patients in terms of not only adequate care but also social recognition (Hallström \n2024). Gendered aspects of clinical encounters as uneven negotiations have been \nreported also in fields closely related to endometriosis. For example, Werner and \nMalterud show how women with chronic muscular pain without a clear causative \nmechanism experience difficulties in performing as credible patients: they seek to \nappear “just right” in clinical encounters and “struggle to be perceived as somati-\ncally ill while simultaneously avoiding appearing mentally unbalanced” (Werner and \nMalterud 2003: p. 1414). In a similar vein, a study juxtaposing clinical encounters \nin menopausal hormone therapy and in methadone maintenance treatment suggests \nthat in both cases, the health issues in question are seen to compromise patients’ \nrationality (Roberts et al. 2009). As a result, patients struggle to perform the kinds \nof rationality that are highlighted in biomedical discourses (Roberts et al. 2009).\nFor medical verification of pain, concrete material proof may be required from \nthe patients when they seek pain treatment. According to Hasson (2012), the diag-\nnosis of menstrual pathology shapes women’s position as participants in knowledge \nproduction. Physical evidence of bleeding may be taken as something that proves or \ndisproves women’s complaints about pain symptoms. In the case of difficult pain, \ngaining verification may be especially difficult due to the subjective aspects of pain. \nMany people living with endometriosis struggle in translating the nuances of their \npain to medical professionals and have therefore developed strategies for medical \nencounters, such as ways of describing the effects of pain as concretely as possi-\nble (Bullo 2020; Griffith 2020; Helosvuori and Oikkonen, 2024). Endometriosis \npatient communities have also an important role in offering epistemic framing to \n\n276 M. Temmes et al.\nconceptualize pain symptoms differently from the logic of clinical pain management \n(Lindgren and Richardson 2023; Whelan 2007). Furthermore, as we discuss in our \nfinal analysis section, patient activism can publicly challenge the existing ration-\nale of pain treatment and question the availability of holistic care. As the studies \ndiscussed above have shown, pain treatment is a highly contested and politicized \nissue. We contribute to this literature by unpacking the tensions that arise when dif-\nficult pain is managed across multiple clinical settings and their different epistemic \nframings. We argue that such tensions can be teased out by tracing the varying con-\nceptualizations of pain between and within sites of care.\nData and methods\nThe data were collected as part of an endometriosis subproject within a larger social \nscience research project on gendered chronic illness in Finland. The interview data \nconsist of semi-structured interviews with 20 clinicians treating patients with endo-\nmetriosis, 27 people diagnosed with endometriosis, and 12 patient activists. The \nclinicians include gynecologists, endometriosis nurses, sexual counselors, pain doc-\ntors, gastrointestinal surgeons, and pelvic floor physiotherapists. They work in pub-\nlic and private clinics providing specialized endometriosis care. The people with \nendometriosis are in their early 20s to late 40s in age and live across the country. \nMany of them have sought and received endometriosis treatment across the health-\ncare system, including local healthcare centers, student healthcare, specialized \npublic endometriosis clinics, and private gynecologists. While they all have been \ndiagnosed with endometriosis, not all are currently patients at any healthcare set-\nting. The patient activists include patient organization representatives as well as \nendometriosis activists who use their social media accounts to raise awareness and \nadvocate for better treatment. The clinician interviews were conducted by Temmes \nand Helosvuori, the interviews with people with endometriosis by Helosvuori and \nOikkonen, and the activist interviews by Temmes. In the analysis that follows, we \nfocus on those interviews that discuss severe, difficult-to-treat endometriosis pain. In \naddition to the interviews, the article also draws on a two-week visit by Temmes to a \npublic endometriosis clinic at a university hospital. The visit involved observing the \nworking practices and the working space in the clinic. The fieldnotes from the visit \ninclude observations about how pain is described in the clinical meetings between \nclinicians and patients, between clinicians, and when individual clinicians explain \ntheir work.\nThe research follows the ethical guidelines of the Finnish National Board on \nResearch Integrity for research in the social sciences. We received written informed \nconsent from all our interlocutors. The interviews were carefully  pseudonymized \nand only details relevant for this article are used in the analysis. For the ethno-\ngraphic fieldwork at the endometriosis clinic, we received a research permit from \nthe university hospital where the clinic is located following a positive ethics review \nby the humanities and social sciences ethics review board connected to Tampere \nUniversity, the home institution of the project. As with the interviews, all personal \ndetails have been carefully removed from the fieldnotes and observations.\n\n277\nChronic pain across clinical settings: the changing…\nThe analysis was conducted jointly by the authors. We identified instances in the \nmaterials where clinicians discuss the clinical options of and challenges in treating \ndifficult-to-treat endometriosis pain, people with endometriosis describe how their \npain has been assessed and how their pain treatment has been decided, and activists \nexplain their view of structural and societal obstacles in accessing adequate pain \ncare. Following multiple rounds of reading, we identified different conceptualiza-\ntions of pain at different clinical settings (such as specialized endometriosis care and \nspecialized pain care) as well as situations (such as particular stages of illness or \ntreatment). We also located tensions between how clinicians and people with endo-\nmetriosis approach pain. While some of the tensions are pronounced, present, for \nexample, in frustration expressed by our interlocutors, other tensions are more sub-\ntle—a slight difference in emphasis, for example—that may yet give rise to different \nexpectations about what counts as effective pain treatment.\nConceptualizations of endometriosis pain in clinical settings\nIn the clinical management of endometriosis, pain is often conceptualized in relation \nto endometriosis lesions and the inflammation caused by them. One gynecologist \ndescribes the management of pain in endometriosis care:\nAs the first-line treatment you have painkillers. Normal ones [ibuprofen and \nparacetamol] are good. But, to treat the cause behind the pain not the symp-\ntom, it would be good that [all patients] would start some type of hormonal \nmedication, contraceptive pills, progesterone only pills or an IUD [intrauterine \ndevice]. The progesterone in them restrains inflammation. […] There are also \ndifferent types of drugs that affect the nervous system that can be given simul-\ntaneously. Some drugs for depression in small doses might reduce pain. In that \nsituation, you’re not treating depression but pain. Some epilepsy medications \ncan also help in pain management.\nThe treatment of endometriosis pain, the excerpt indicates, addresses pain as a \nsymptom as well as aims to control the reasons behind the pain. Hormonal medica-\ntion, in particular, is defined as a treatment that addresses the reasons \"behind the \npain, not the symptoms.” Currently, clinical guidelines consider hormonal products \nto be a key medication for all endometriosis patients as they impact the estrogen \nlevels in the body, controlling the growth and bleeding of the endometriosis lesions \n(Tosti et al. 2017). Hormonal products, as our clinician interlocutor mentions, can \nbe combined with anti-inflammatory medications such as ibuprofen as well as neu-\nromodulatory drugs that increase the pain threshold, which are also used in the treat-\nment of depression and epilepsy. Surgery, as well as stronger hormonal products, \nremain alternative treatment pathways if the first-line treatment does not ease the \npain (Taylor et al. 2021). Like hormonal medications, surgeries also target endome-\ntriosis lesions as the cause behind endometriosis pain.\nThe central role of endometriosis lesions in clinical definitions of endometriosis \npain is also visible when clinicians describe patients whose pain does not respond to \n\n278 M. Temmes et al.\nstandard treatment. According to a gynecologist working at a specialized endome-\ntriosis clinic:\nWe have nowadays many young women that have a lot of disabling pain and \nwhen they come here, the pain might have already become chronic. Then you \nhave to think about diagnostics, whether this is endometriosis or chronic pain \nand treatment for that. It’s a specific patient group, the people who might not \nhave that much endometriosis findings. For them, the treatment needs to be \nholistic, maybe think about the hormonal treatment and treatment for chronic \npain and additional care we can offer, like pelvic floor physiotherapy and sex-\nual counseling and so on.\nThis quotation addresses the well-known diagnostic delay in endometriosis, \nwhich has been linked to the dismissal of debilitating pain as “normal” period pain \n(Horne and Missmer 2022; Hudson 2021). To gain a referral to a specialized public \nendometriosis clinic in Finland, patients have to first seek help in primary healthcare \nor private clinics. Suggested by the quotation above, the lack of diagnosis might \nlimit the ways in which endometriosis pain is managed, which can lead to a change \nin the epistemic framing of pain—that is, the pain may have become chronic. In \nthe quotation, the demarcation between diagnosing endometriosis pain and diagnos-\ning chronic pain indicates a shift in the conceptualization of pain. Chronic pain is \nseen as a problem of the central nervous system being stimulated so that even a nor-\nmal touch can trigger pain, as one endometriosis nurse working in an endometriosis \nclinic explained to Temmes. The gynecologists we interviewed consider it possible \nthat chronic pain can develop also after endometriosis is diagnosed. However, such \npain falls outside the framework of standard gynecological care for endometriosis \nand becomes an indicator for a subset of patients who need holistic, multidiscipli-\nnary care.\nThe distinction between endometriosis pain and pain that has become chronic \nhas been criticized also in the biomedical research on endometriosis. Coxon et al. \n(2023) note that endometriosis pain is often seen to be only nociceptive pain—\nmeaning pain that originates from a tissue damage, in this case the endometriosis \nlesions. They argue that there is a need for further understanding of neuropathic pain \n(when lesions or other changes have damaged the nervous system) and nociplastic \npain (when pain cannot be explained with any tissue damage but is caused by the \nsensitization of the nervous system) in endometriosis (see also Yoo and Kim 2024 \nfor the distinction of different pain types). Expanding the understanding of different \ntypes of pain, Coxon et al. (2023) argue, stresses the need for the clinicians to con-\nsider carefully when surgery is needed, as tissue damage during surgery can induce \nneuropathic pain. Distinguishing between pain symptoms also makes visible that \nendometriosis treatment requires multidisciplinary collaboration to manage differ -\nent kinds of pain. While the above quoted gynecologist, along with other specialized \nclinicians we interviewed, makes a distinction between endometriosis pain and pain \nthat has become chronic, this does not mean that clinicians would not acknowledge \nthe multitude of different types of pain related to endometriosis. For example, our \ngynecologist interlocutors emphasize the need to carefully consider when surger -\nies with their associated risks of complications of pain are needed, or to suggest \n\n279\nChronic pain across clinical settings: the changing…\nalternative pain management methods, such as physiotherapy, in the treatment of \nendometriosis patients.\nHowever, research has not addressed in detail the ways in which the conceptu-\nalization of pain shifts within and between different clinical settings and how these \ndifferences lead to different rationales of when and how pain should, and could, be \ntreated. We locate these shifts at the intersections of different epistemic cultures that \nframe endometriosis treatment. For example, a physiotherapist stresses in an inter -\nview that rather than focus on a particular location in the body, they want to help the \npatients to relax the whole body:\nPatients’ normal state is often already tensed. Some might have tense shoul-\nders all the time without realizing it. In that situation, when the pain hits that \narea, the tension is increased. Also the fear of pain in certain situations can \nincrease the tension in the muscles. The pelvic floor reacts to psychological \nstress, even if the stress isn’t linked to the gynecological area. Relaxation has \na huge impact. […] Sometimes patients say that it’s a relief to realize that the \npain is caused by the muscle tensions. It’s easier to accept than [thinking] \nwhether they have a new endometriosis lesion.\nThe physiotherapist moves the treatment focus away from the endometriosis \nlesions to the overall tensions in the body. One of the physiotherapists we inter -\nviewed emphasizes that although endometriosis diagnosis, as well as possible \nprior endometriosis surgeries, can impact the treatment, this does not mean that \nthere would be a standard treatment design for all patients. Instead, the treatment \nis always  designed “according to an individual plan, there are no two identical \n[patients].”\nAt the same time, the aim of the treatment shifts to coping with the pain in daily \nlife. Another physiotherapist emphasizes:\nThe way of the world seems to be that [patients want help] fast, now and here, \n[and then have to] face disappointment and bitterness. In some [patients] it’s \nclear that they’ve never thought that there’s no immediate trick. […] [Our \ntreatment focuses on addressing] possible problems in movement or functional \nability. For example, that sexual intercourse would be less painful, walking \nwould be easier, you could do different movements or take part in everyday \nactivities and work.\nThis statement shows that the shifts between clinical settings require that the \npatient understands the basis of their pain as well as the possibilities to control it in a \nnew epistemic frame. Whereas hormonal products and anti-inflammatory painkillers \nused as the first-line treatment in endometriosis target the biological cause behind \nthe pain, the management of chronic pain is focused on learning how to live with the \npain.\nWhen endometriosis pain is considered to be chronic, patients can be referred to \na pain clinic. This involves a shift in the epistemic framing of pain. The treatment in \npain clinics is based on pharmaceutical and non-pharmaceutical treatment options, \nsuch as psychologist services and prescription of strong pain medications. Similarly \n\n280 M. Temmes et al.\nto the physiotherapists we interviewed, a clinician working in a pain clinic stresses \nthat they do not have any specific treatment to offer for people with endometriosis. \nInstead, the potential reason behind a patient’s pain is assessed:\nWe usually don’t have any precision treatment to offer to a patient. But of \ncourse we aim to define whether the pain is nociceptive, caused by a tissue \ndamage, or neuropathic, caused by a nerve damage, or nociplastic where pain \nsensitization has happened without us being able to show a tissue damage. We \ndesign our treatment based on this distinction.\nWhile the pain clinicians aim to define the type of pain that their patient might \nhave, this definition is not based on the prior endometriosis diagnosis. Yet, endome-\ntriosis diagnosis can direct clinicians’ assumptions of the origins of pain:\nIf the patient has endometriosis, then their pain is likely linked to pain sensi-\ntization and we will map the possible medical treatment [at the pain clinic]. \nThese patients often have also other types of issues and if we think of the psy -\nchosocial framework, we can find multiple types of [reasons behind the pain]. \nWe can try to assess [different causes] and refer the patient to appropriate care.\nThis quotation indicates that the prior endometriosis diagnosis directs clinicians’ \nexpectations about what kind of pain treatment is effective. They may consider \npain medication as well as address the so-called “psychosocial framework,” which \nstresses that changes in individual behavior, thinking and social aspects of life can \nhelp the patient to cope with the pain. This emphasis is not surprising considering \nthat the first consultation at the pain clinic also includes a meeting with a psycholo-\ngist. Patients can also consult a psychiatrist or a social worker depending on their \nneeds.\nAs treatment in the specialized care usually lasts from six months to a year, pri-\nmary care and—if financially possible for the patient—private clinics remain the \nmain sites where people with endometriosis seek help for the management of their \npain. Furthermore, as endometriosis is a chronic condition often lasting for decades, \npeople’s treatment paths are not linear but move back-and-forth between these sites. \nFor example, new endometriosis findings can shift the focus back from chronic pain \nto endometriosis pain when a new surgery is planned. Thus, the line between endo-\nmetriosis pain and chronic pain is not set in stone in clinical practices. Nevertheless, \nthe above examples about physiotherapy and pain clinic emphasize the need for the \npatient to re-conceptualize the root of their pain for their pain management in new \nclinical contexts.\nThe above examples show that the understanding of pain and its treatment has \nchanged in recent years, evident, for example, in clinicians’ consideration of poten-\ntial tissue damage caused by surgeries and the need to account for different types \nof pain mechanisms in endometriosis patients. Likewise, the need for multidiscipli-\nnary treatment for endometriosis patients is widely acknowledged in the specialized \nendometriosis and pain care settings. Yet, the move between clinical sites poses sig-\nnificant challenges for patients. For example, differing explanations for pain symp-\ntoms, once made in the clinical settings, can follow the patients between sites. One \n\n281\nChronic pain across clinical settings: the changing…\nof our interlocutors with endometriosis describes her experiences with an inaccurate \nbut persistent clinical diagnosis:\nI remember that [the gynecologist] had a dictation recorder, and there was also \na midwife or a secretary who wrote down things. The diagnosis I received was \nstomach ache, and it followed me a long time. Every time I went somewhere, \nall the doctors said you have the stomach ache. I have never had stomach ache \neven in connection to endometriosis. My stomach has always been fine. It’s \nalmost the only part of me that has always been fine.\nThis excerpt describes the challenges involved when pain management relies on \nmultiple different clinicians relying not only on patients’ descriptions—which can \nbe misinterpreted as well—but also on other clinicians’ notes. In this case, it was \nonly in the meeting with a psychologist at the pain clinic when the interlocutor’s \naccount of being misdiagnosed was taken seriously. This example shows that the \nclinical encounters never happen in a vacuum. When a patient moves between clini-\ncal settings, earlier medical appointments continue to structure how symptoms are \nbrought into a new epistemic framework. Thus, our analysis suggests, epistemic \nframes for pain in endometriosis not only shift across clinical settings but are also \nenacted in relation to one another. As endometriosis patients move in-between clini-\ncal settings and conceptualizations of pain, previous bad experiences can make it \ndifficult to establish a trusting clinical relationship.\nNegotiations between doctors and patients: establishing trust \nin shifting contexts\nOne of the biggest recent changes in the treatment of pain has been the increasing \nawareness of the potential dangers of prescribing opioid-based pain medication. In \nour interviews, gynecologists often emphasize that they do not prescribe strong pain \nmedications, such as opioids, in endometriosis treatment. One gynecologist notes \nthat opioids “do not in principle belong to the treatment of endometriosis” and they \nshould only be used in short-term treatment such as immediately after a surgery to \ntreat post-surgery pain. Because endometriosis patients are often young, many of \nour clinician interlocutors prefer not to prescribe opioids as the patients would need \nto use them for a long period of time and, according to one gynecologist, eventu-\nally opioids “could even make the pain worse”. Another gynecologist describes the \ndevelopment of addiction:\nIn these sad situations when [the patient] is caught in a vicious circle with \nthe strong pain medications—they are challenging situations. Endometriosis \nas a disease exposes patients to [the development of the vicious circle] as [the \npatient] has chronic pain and starts to use opioids. This is a patient group in \nserious risk for the misuse of drugs.\nThis statement echoes the point we made in the previous section: the distinc-\ntions made between pain caused by endometriosis lesions, temporary pain caused \n\n282 M. Temmes et al.\nby surgical intervention, and pain that has become chronic frame the logic of \ntreatment. While opioids are prescribed for acute surgery-related pain, long-\nterm treatment with opioids is considered a risk due to potential development of \naddiction.\nIn cases when strong pain medication is prescribed, moving between clinical \ncontexts can cause additional stress for people with endometriosis. One of our \ninterlocutors with severe endometriosis describes her experiences when seeking \nhelp during a debilitating pain attack. When she told the emergency ward staff  \nthat she had a prescription for an opioid-based pain medication by a well-known \nendometriosis specialist, her account was challenged:\nThe nurse didn’t believe me and went to check in the national digital patient \nrecord system whether I had a prescription and who the doctor was. Then \nthey said, well, yes, I can see it here. It was insulting. I was in so much pain, \nand yet they tried to turn me away. First they said that they can’t give me \nanything stronger, but I was stubborn, I said I don’t care whether you give \nme something, but I can’t be at home. Then they said reluctantly that they’ll \ntreat me, but they’ll do lab tests, so be prepared. We’ll test your blood and \nurine if you stay here. It’s not a problem for me so I said do whatever tests \nyou want. I don’t care, I just want this pain to end. I gave all the samples. I \ndon’t know what they really tested, but I felt that I was being threatened.\nWhile stronger pain medication was administered in the end, the association \nbetween opioids and addiction framed the clinical encounter where the patient’s \ndescription of her pain was doubted, and further tests were seen as a way to con-\nfirm these doubts.\nWe encountered similar stories from other interlocutors with endometriosis. \nWhile many did not have any personal negative experiences, they were still aware \nof the possibility that their pain, and their need for pain medication might be \ndoubted in future clinical encounters. Difficult encounters between patients and \nclinicians have been addressed in previous literature in terms of how patients \nare seen as “good” and “bad” or “difficult” (see e.g., Sointu 2017; Werner et al. \n2004). Steinmetz and Tabenkin (2001) show that instead of considering particu-\nlar cases as medically challenging, physicians may assess patients themselves as \nbeing difficult when patients have multiple and unspecified “complaints” and psy -\nchosomatic issues—which is often the case in several gendered conditions. This \ntension can be felt by the patients, who struggle not only with their chronic condi-\ntion but also with how to perform themselves as someone who is not “the kind of \nwoman” who complains about everything (Werner and Malterud 2003: p. 1035). \nOur study shows that the question of medical validation of pain and adequate \nmedication raises tension across multidisciplinary endometriosis care and is per -\nsonally felt by patients as they seek care in different clinical settings.\nAwareness of the public discussion on opioid use for chronic conditions shapes \npeople’s expectations about communicating with clinicians about strong pain \nmedication. One interlocutor describes her experience in getting a prescription \nrenewed in the primary care:\n\n283\nChronic pain across clinical settings: the changing…\nOne doctor had accidentally cancelled all my prescriptions and had writ-\nten that temporary medication had been discontinued in agreement with the \npatient. I have a chronic illness. This is medication for that illness. It’s not \ntemporary. I had to call another doctor at the health center and ask them to \nwrite a new prescription for [the opioid-based medication] and other medi-\ncations. I was so stressed about the possibility that I might not get it. It was \noriginally prescribed by a doctor in private healthcare so apparently it didn’t \nshow in the health center patient records.\nShe tells about another incident at the health center when she was asked \nwhether she had a prescription for the opioids that she had told them that she was \ntaking. She felt that the healthcare staff considered the possibility that she might \nhave been using a friend’s opioids.\nNegotiations in the clinical settings are often full of fear and stress for the peo-\nple with endometriosis as they must explain why they request a medicine associ-\nated with an addiction risk. The same interlocutor describes the effects of these \nencounters:\nAlthough I’ve always been able to get [my medication], I have this constant \nconcern that what if I can’t get it. It’s said that people are addicted to opi-\noids and they demand a particular medication. Of course I ask for a specific \nmedication because it’s the one that works for me.\nPrevious research suggests that describing chronic pain in a clinically mean-\ningful manner is challenging in any situation as patients struggle to scale the \nexperienced pain or describe their pain mainly as physical against clinicians’ \nview of pain as biopsychosocial (Declercq 2023; Mellor 2023). The examples \nof stress and fear in endometriosis pain management, as in the quotation above, \nillustrate the lived effects of the changing politics around pain medication. Such \npolitics shapes the clinical expectations about appropriate pain management as \nwell as the ways in which patients prepare to describe their pain. Negotiations of \npain management between clinicians and patients can thus be highly tense situ-\nations where the concern about addiction development can overrule the need to \ntreat pain.\nSeveral interviews with people with endometriosis include concern about \npotential situations in which the patient is not prescribed any effective pain medi-\ncation and has to go to the emergency ward when excruciating pain hits. In these \nworst-case scenarios, maintaining existing effective pain medication is seen as \nessential. Some interlocutors with endometriosis mention pain clinics as espe-\ncially daunting clinical settings as they were concerned that pain clinicians would \nhave the final say on the continuation of the existing pain medication. While \nstrong pain medications are prescribed in the pain clinic, pain clinicians try to \navoid continuously prescribing them for chronic pain patients. A pain clinician \nexplains:\nIf there’s any evidence that [the opioid-based medication] works and the \ndoses are reasonable, we might continue [to prescribe it]. But often it is \n\n284 M. Temmes et al.\nthought that with young people, whose problem can continue for decades, \nit is one of the biggest decisions you can make in pain management, to start \nstrong opioids for the patient. […] You need to discuss with the patient how \nthe treatment is organized, with what kind of doses and how the medicine \nis used. So that from the start the patient is aware that this is not an unprob-\nlematic substance, and its proper use is the key.\nWhile the excerpt stresses that opioid-based medication should be avoided \nwith young people, it also notes that strong pain medication can be continued \nif there is evidence that it is effective as well as an agreement between clinician \nand patient about how to use it. These views follow the nationwide guidelines for \nthe treatment of pain in Finland, which stress extensive caution when prescribing \nopioids to chronic pain patients to avoid addiction or developing tolerance for \npain  medication (Kipu. Käypä hoito -suositus 2017). Still, the guidelines state \nthat opioids can be prescribed in a well-established clinical relationship with the \npatient and after assessing that the patient is in a stable psychosocial state (Kipu. \nKäypä hoito -suositus 2017). In other words, both the statement of the pain clini-\ncian as well as the nationwide guidelines illustrate how paramount the established \nrelationship between the parties is in pain management.\nClinical encounters, especially when pain is treated with opioids, are, then, \nshaped by the trust between the patient and the clinician. One pain clinician, when \nasked about the role of trust at the pain clinic, mentions that they have had some \ncases where patients have misused the prescribed medication, which has felt like a \nbetrayal. Still, the pain clinician emphasizes the role of trust in clinical encounters:\nThe clinician usually believes that the patient is right and talks about their \nexperiences [honestly]. But what is the correct treatment is another thing \naltogether—that is something for the clinician to decide. Of course this goes \nthe other way as well. If the encounter between the clinician and the patient \nis unsuccessful—meaning that the patient feels that they have been mis-\ntreated—this is something that shapes the future encounters as well. In this \nway, gaining trust is at the heart of the treatment.\nThis clinician’s description of the centrality of trust in pain treatment—be it \npharmaceutical or non-pharmaceutical—underscores that treatment relations in \nchronic illness need to be maintained over time. Previous bad experiences can \nhave an impact on the clinical relationship, especially when a patient hopes to \nreceive strong pain medication.\nSimilarly, our interviews with people with endometriosis show that the trust \nin an individual clinician can help to alleviate fear of going to the pain clinic. An \ninterlocutor describes her situation:\nI heard last week that my pain has likely become chronic. Now I have an \nappointment for a gynecologist so that they can make a referral to the pain \nclinic. If I hear that it’ll be the same doctor who treated me [at the pain \nclinic] for another pain before, then I’m not nervous at all. Then I’m look -\ning forward to it.\n\n285\nChronic pain across clinical settings: the changing…\nShe continues to explain that if, however, she is assigned another doctor at the \npain clinic, she will cancel her appointment as she has heard worrying stories about \nthe other doctors, for example, that they have canceled prescriptions for strong pain \nmedications. This stark differentiation between clinicians illustrates how fears and \nanxieties around pain management can become attached to particular clinicians \nbased on personal experiences as well as accounts by peers.\nPrevious research has shown similar tensions in negotiating opioid-based treat-\nment in chronic pain management (Dassieu et al. 2021; Matthias et al. 2020). How -\never, our data suggest that trust between patients and clinicians has a central role \nalso in  situations when a clinician needs to convince patients to take strong pain \nmedications. One person with endometriosis describes such a situation:\nI have heard a lot about people having problems getting effective pain medica-\ntion, but I haven’t had any problems. I think it depends on the doctor. In the \nprivate sector, where I’ve seen doctors who know endometriosis, they’ve in \nfact encouraged using [pain medication]. Of course not in the sense that go \nahead use opioids. But so that if you can’t cope with the ibuprofen and paracet-\namol, then you need to take this. It might have been also because I have men-\ntioned that I don’t like taking medication. They have encouraged and explained \nhow the pain mechanism works and how pain can become chronic, and how \nharmful that can be.\nIn the interview, she also describes a visit to an emergency ward during a pain \nattack. Although the standard pain medication had not worked, she expressed doubts \nabout the strong pain medication she was offered. A doctor had then arrived and \nexplained that she really needed it to stop the pain. The rationale of strong pain med-\nication preventing pain from becoming chronic was invoked as the doctor explained \nhow enduring pain can make it worse in the long run. This example shows how shifts \nbetween pain conceptualizations can impact pain management: a patient’s trust in \nclinicians is formed in relation to a new understanding of pain mechanisms. Trust, \nthen, enables patients and clinicians to move across different epistemic approaches \nto pain.\nPossibilities for individualized care: toward holistic treatment \nof chronic pain?\nThe changing practices in pain treatment, especially in the treatment of chronic pain, \nhave encountered criticism from patients. Patient activists have stressed that the \ntreatment of chronic pain patients in Finland is inadequate. For instance, a complaint \nwas filed with the Parliamentary Ombudsman in 2020, signed by over 900 people. \nAccording to the website of the Chancellor of Justice, a complaint can be made if \n“there is reason to suspect that an authority or other person or body performing a \npublic duty has acted unlawfully” (Chancellor of Justice n.d.). The complaint stated \nthat individual differences between chronic pain patients are often not considered \nespecially in the pain clinics and that no one oversees the care pathway, which has \nled to a situation where individualized care is not adequate or is completely missing. \n\n286 M. Temmes et al.\nThe complaint resulted in the Parliamentary Ombudsman requesting the national \nsupervisory authority for welfare and health, Valvira, to collect information about \npain treatment from all hospital districts in Finland. In their official response to the \ncomplaint in 2021, the Parliamentary Ombudsman confirms that most care provid-\ners follow the legal requirements and states that nationwide pain treatment guide-\nlines are followed. However, they raise a concern over timely access to treatment, \nlack of trained specialists in pain treatment, and problems with offering treatment \noptions from different specialists (Sakslin 2021).\nThe complaint to the Parliamentary Ombudsman highlights the expectations and \nchallenges of individualized chronic pain management in Finland. In our data, we \nencounter descriptions by clinicians as well as people with endometriosis of prob-\nlems in the treatment of endometriosis-related chronic pain. Clinicians find the \nsiloed nature of pain treatment a significant problem—especially the limited com-\nmunication between primary care and specialized clinics. The lack of communica-\ntion, they suggest, impacts pain treatment before endometriosis diagnosis as well as \nafter it. One endometriosis nurse, for example, notes that especially the medications \naiming to increase the pain threshold are sometimes started too late to prevent pain \nbecoming chronic. Furthermore, while clinicians note the need for a holistic treat-\nment of pain, they also acknowledge that treatment options for patients with chronic \npain are limited. According to one gynecologist:\nIt is a challenging patient group: as no one can really help them, they don’t \nreally belong anywhere. Even if the principle is that chronic pain should be \ntreated in primary health care, they don’t have the resources to do that. I’ve \ntalked about this with at least [two hospitals’] endometriosis doctors and these \nsame problems are present everywhere.\nThe quotation indicates that the need for better treatment for endometriosis \npatients whose pain has become chronic is acknowledged by endometriosis special-\nists. Still, there is a sense that this care is outside the scope of gynecological units, \nwhere specialized endometriosis treatment is organized. Similarly to the ombuds-\nman’s statement, our clinician interlocutors consider the lack of resources as the \nmain problem in organizing effective pain treatment.\nImportantly, patients’ criticism about the management of chronic pain is directed \nnot only at the increasing hesitation to prescribe opioid-based medication but also \nat the absence of adequate non-pharmaceutical treatment outside specialized endo-\nmetriosis clinics. The 2020 complaint to the Parliamentary Ombudsman notes that \n“especially non-medical methods are non-existent in certain locations and [doctors’] \ncompetence varies” (Sakslin 2021). This note echoes our interviews with people \nwith endometriosis, many of whom see non-pharmaceutical treatment methods as \nrelevant but inadequate. One interlocutor notes:\nI know there are people who find non-pharmaceutical treatments effective. I \nknow I’m not the only one whose symptoms they alleviate. But it’s not enough \nthat I’ll do exercises on my own. There’s also an interactive aspect, there needs \nto be someone who knows what you can do in a situation where you feel that \nyou can’t do anything. I can’t be my own carer. Non-pharmaceutical treatment \n\n287\nChronic pain across clinical settings: the changing…\ndoesn’t mean that I could just decide to take care of myself, it requires regular \nsupport from a professional.\nThis quotation indicates the need for regular meetings with professionals, such as \nphysiotherapists, to ensure the long-term impact of non-pharmaceutical treatment. \nHowever, as the first analysis section showed, long-term treatment is often una-\nvailable for people with endometriosis. Even if they are referred to physiotherapy, \nthey can access it in specialized care only for a limited time. One physiotherapist \ndescribes how patients usually visit a physiotherapist three to five times “to see how \nthings are progressing.” She adds, “If there’s no response to the treatment, we don’t \ncontinue. One can’t come here for months or for years as this is specialized care and \n[focused on] acute care.” This comment is an important reminder that while special-\nized care for endometriosis patients does contain diverse pain management methods, \nthe long-term care that endometriosis patients with chronic pain often want is not \navailable.\nThe situation is different for those who can afford accessing treatment in private \nclinics. Many of our interlocutors describe how they have visited a gynecologist or \naccessed non-pharmaceutical treatment such as physiotherapy in the private health \nsector. Still, the negotiations about pharmaceutical pain management we described \nin the second analysis section happen both in public and private clinics, indicating \nthat access to effective pain treatment is not only about resources but involves chal-\nlenges in coping with the stress of shifting clinical settings and epistemic framings \nof pain. Thus, while increasing non-pharmaceutical treatment options is seen as cru-\ncial by all our interlocutors, our data suggest that further consideration needs to be \ngiven also to the stressful epistemic shifts that happen in the treatment of endome-\ntriosis pain as patients move across clinical settings.\nConsidering the limited treatment options, it comes as no surprise that many cli-\nnicians and patients place their hope in the future development of new treatment \noptions. In chronic pain treatment, new approaches in neuromodulation are explored \nbut, as one gynecologist notes, the treatment is highly expensive and is not effective \nfor everyone. Hope is also often placed on the development of new endometriosis \nmedications. This hope extends in some cases to current patients who participate in \nthe clinical trials of new pharmaceuticals. However, for the endometriosis patients \nwhose pain has become chronic, or who might have other conditions besides endo-\nmetriosis, these clinical trials are often out of reach. One interlocutor with endome-\ntriosis explains:\nI tried to enroll in a clinical endometriosis study in which they were devel-\noping a non-hormonal medication. The person I had emailed called me and \ninterviewed me on the phone. Then they said that they are so sorry, but they \ncan’t include me in the study because my situation is too difficult. It felt like, \nI don’t know. Sometimes the situation makes me really depressed, but I try to \nthink that new treatments are being developed and perhaps there will be one \nthat would work for me.\nThis account resonates with a broader issue in the development of clinical tri-\nals for new endometriosis medication, which tend to “focus on treatment of the \n\n288 M. Temmes et al.\nendometriosis lesion by surgical or medical approaches, rather than considering \n[endometriosis associated pain] as a chronic pain condition” (Coxon et  al. 2023: \n598). This can limit the type of endometriosis patients admitted to the trials, mean-\ning that the results of the trials do not necessarily benefit those patients whose pain \nhas become chronic. Different ways of defining, assessing, and classifying endome-\ntriosis-related pain, then, impact not only existing treatment practices but also the \nways in which future treatment that reaches beyond the existing epistemic framings \nis imagined.\nConclusion\nChronic pain that stems from endometriosis can manifest itself in multiple ways. In \nthe case of debilitating pain symptoms that are not alleviated with standard methods \nsuch as hormones and anti-inflammatory painkillers, endometriosis patients often \nend up seeking help at emergency wards, private gynecologists, and—through refer -\nral—specialized endometriosis or pain clinics. At this point, their pain has often \nbeen enacted as untreatable at previous sites of treatment. We have shown in this \narticle that the understanding of difficult endometriosis-related pain differs across \nclinical settings, and that these different ways of framing pain result in different \nrationales of treatment. Pain can be directly linked to endometriosis lesions, which \nhormonal or surgical interventions then target. At other times, the target of the treat-\nment can be the nervous system, which is intertwined with the chronicity of pain. In \nother words, multiple, intersecting and changing framings shape clinical practices \nand care pathways of the patients.\nWe have identified medical and societal shifts taking place in both ideas and prac-\ntices of managing difficult endometriosis pain. The so-called opioid crisis has given \nrise to concerns about the accountability of the clinicians who prescribe poten-\ntially addictive pharmaceuticals as well as worry among patients that they may not \nbe able to continue medications that they experience as the last resort of help. At \nthe same time, non-pharmaceutical methods of pain management such as pelvic \nfloor physiotherapy are becoming more common, and evidence is accumulating on \nhow they may provide significant tools for living with endometriosis. Both the ques-\ntion of effective yet sustainable medication and the question of non-pharmaceuti-\ncal pain treatment are linked with the current policy aims of implementing holistic \napproaches in endometriosis care. Based on our observations, both clinicians and \npatients invest hope in holistic care that would challenge the siloed nature of health-\ncare services.\nClinical settings provide the stage for the enactment of these societal and medi-\ncal developments around chronic pain. We have shown in the analysis, firstly, how \nthe shifting conditions of treatment require re-conceptualization of pain by clini-\ncians and patients. Chronic pain is approached differently than pain that has a direct \nphysiological link with endometriosis. In the best-case scenario, pain that has not \nyet turned chronic may disappear after appropriate treatment measures. The integra-\ntion of non-pharmaceutical treatment options, in turn, sheds light on the multiplicity \nof chronic pain and its mechanisms. Secondly, we have explored the ways in which \n\n289\nChronic pain across clinical settings: the changing…\nthe question of trust comes to play in clinical encounters concerning the possibili-\nties to treat difficult persistent pain with possibly addictive pharmaceuticals. The \nquestion of trust is twofold: clinicians have to trust that the patients are not seek -\ning intoxicating substances, while patients share experiences with each other as to \nwhich clinician’s expertise to trust. Thirdly, we have shown how the siloed nature of \npain treatment is deemed as inadequate by both clinicians and people seeking care. \nHope is thus invested in future treatment procedures that would include holistic and \nindividualized perspectives as well as both pharmaceutical and non-pharmaceutical \ntreatments. Hope is also attached to the prospect of structural changes in how pain \ncare is organized and facilitated in Finland.\nOur analysis is in line with previous studies that show the ways epistemic ques-\ntions provoke struggles and disputes. Stakeholders might share different views on \nmeasurements and verifications of pain. Feminist research has shown how societal \nassumptions of what women’s pain is have shaped the ways in which pain is evalu-\nated, encountered, and lived through in gendered conditions such as endometriosis. \nIn addition to supporting these analyses, our study adds to the understanding that \nsufficient pain care requires structural support that is often lacking in the case of \nchronic conditions. However, by focusing on epistemic framings and shifting con-\nceptualizations of pain, our research highlights that the question of how to treat dif-\nficult endometriosis involves much more than resources to improve the structures of \nhealthcare. It also involves acknowledging tensions between the epistemic framings \nof different sites of endometriosis care—tensions that leave patients confused, frus-\ntrated, and concerned about whether their pain will be recognized and addressed.\nFinally, our analysis of the changes in pain treatment highlights that clinicians \nand patients share a mutual interest: to enable the conditions for living with as lit-\ntle pain as possible. Despite differing positions and power relations, both clinicians \nand patients face structural problems while pursuing this goal. The question of how \nto integrate and negotiate the different aspects of difficult-to-treat pain in clinical \nsettings and in patients’ everyday lives thus remains a burning societal and public \nhealth issue.\nFunding Open access funding provided by Tampere University (including Tampere University Hospital). \nThe research was funded by the Research Council of Finland (grant 339143) and Kone Foundation (grant \n202008728).\nDeclarations \nConflict of interest On behalf of all authors, the corresponding author states that there is no conflict of \ninterest.\nOpen Access This article is licensed under a Creative Commons Attribution 4.0 International License, \nwhich permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as \nyou give appropriate credit to the original author(s) and the source, provide a link to the Creative Com-\nmons licence, and indicate if changes were made. The images or other third party material in this article \nare included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the \nmaterial. If material is not included in the article’s Creative Commons licence and your intended use is \nnot permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission \n\n290 M. Temmes et al.\ndirectly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/\nlicenses/by/4.0/.\nReferences\nBoddice, R. 2017. Pain: A very short introduction. Oxford: Oxford University Press.\nBoddice, R. 2023. Knowing pain: A history of sensation, emotion, and experience. Cambridge: Polity.\nBullo, S. 2020. ‘I feel like I’m being stabbed by a thousand tiny men’: The challenges of communicating \nendometriosis pain. Health 24 (5): 476–492.\nChancellor of Justice (n.d.) Complaints. https:// oikeu skans leri. fi/ en/ compl aints, accessed 14 June 2024.\nCohen, S., L. Vase, and W. M. Hooten. 2021. Chronic pain: An update on burden, best practices, and new \nadvances”. The Lancet 397 (10289): 2082–2097.\nCoxon, L., E. Evans, and K. Vincent. 2023. Endometriosis—A painful disease. Current Opinion in \nAnaesthesiology 36 (5): 595–601.\nDassieu, L., A. Heino, É. Develay, J.-L. Kaboré, M. G. Pagé, G. Moor, M. Hudspith, and M. Choinière. \n2021. ‘They think you’re trying to get the drug’: Qualitative investigation of chronic pain patients’ \nhealth care experiences during the opioid overdose epidemic in Canada. Canadian Journal of Pain \n5 (1): 66–80.\nDeclercq, J. 2023. Talking about chronic pain: Misalignment in discussions of the body, mind and social \naspects in pain clinic consultations. Health 27 (3): 378–397.\nGollust, S., and J. Haselswerdt. 2021. A crisis in my community? Local-level awareness of the opioid \nepidemic and political consequences. Social Science & Medicine 291 : 114497. https:// doi. org/ 10. \n1016/j. socsc imed. 2021. 114497.\nGriffith, V. 2020. Healers and patients talk: Narratives of a chronic gynecological disease. Lanham: Lex-\nington Books.\nHallström, I. 2024. Endo time: Endometriosis and the flow of recognition. Hypatia 39(2): 423-443. \nhttps:// doi. org/ 10. 1017/ hyp. 2023. 116.\nHasson, K. 2012. From bodies to lives, complainers to consumers: Measuring menstrual excess. Social \nScience & Medicine 75 (10): 1729–1736.\nHawker, G., S. Mian, T. Kendzerska, and M. French. 2011. Measures of adult pain: Visual analog scale \nfor pain (VAS Pain), numeric rating scale for pain (NRS Pain), McGill pain questionnaire (MPQ), \nshort-form McGill pain questionnaire (SF-MPQ), chronic pain grade scale (CPGS), short form-\n36 bodily pain scale (SF-36 BPS), and measure of intermittent and constant osteoarthritis pain \n(ICOAP). Arthritis Care & Research 63 (S11): S240–S252.\nHelosvuori, E., and V. Oikkonen. 2024. Sensing pain: Embodied knowledge in endometriosis. Health \n28(6): 937–952. https:// doi. org/ 10. 1177/ 13634 59323 12149 38\nHilden, H. M., L. Hautamäki, and J. Korkeila. 2021. Clinicians’ experiences on patients’ demands and \nshared decision making in Finnish specialized mental health care. Nordic Journal of Psychiatry 75 \n(3): 194–200.\nHolen, M., and S. Lehn-Christiansen. 2010. Problematized patients—Intersectional perspectives on gen-\nder, ethnicity, class and biomedicine. Kvinder, Køn & Forskning (2-3): 51-60.   https:// doi. org/ 10. \n7146/ kkf. v0i2-3. 28014.\nHorne, A., and S. Missmer. 2022. Pathophysiology, diagnosis, and management of endometriosis. BMJ \n379: e070750. https:// doi. org/ 10. 1136/ bmj- 2022- 070750.\nHovey, R., V. Khayat, and E. Feig. 2018. Listening to and letting pain speak: Poetic reflections. British \nJournal of Pain 12 (2): 95–103.\nHudson, N. 2022. The missed disease? Endometriosis as an example of ‘undone science.’ Reproductive \nBiomedicine & Society Online 14:20–27. https:// doi. org/ 10. 1016/j. rbms. 2021. 07. 003.\nInternational Association for the Study of Pain (IASP) (2020). IASP announces revised definition of \npain. https:// www. iasp- pain. org/ publi catio ns/ iasp- news/ iasp- annou nces- revis ed- defin ition- of- pain/, \naccessed 14 June 2024.\nJones, C. 2021. Queering gendered disabilities. Journal of Lesbian Studies 25 (3): 195–211.\nKipu. Käypä hoito -suositus (Pain. Current care guidelines Abstract] (2017) Suomalaisen Lääkäriseuran \nDuodecimin, Suomen Anestesiologiyhdistyksen ja Suomen Yleislääketieteen yhdistyksen asettama \n\n291\nChronic pain across clinical settings: the changing…\ntyöryhmä. Helsinki: Suomalainen Lääkäriseura Duodecim. https:// www. kaypa hoito. fi/ hoi50 103? \ntab= suosi tus, accessed 14 June 2024.\nLindgren, S., and L. Richardson. 2023. Endometriosis pain and epistemic community: Mapping dis-\ncourses in online discussions among sufferers. Social Science & Medicine 326: 115889. https:// doi. \norg/ 10. 1016/j. socsc imed. 2023. 115889.\nMatthias, M., T. Talib, and M. Huffman. 2020. Managing chronic pain in an opioid crisis: What is the \nrole of shared decision-making? Health Communication 35 (10): 1239–1247.\nMellor, N. 2023. Cripping the pain scale: Literary and biomedical narratives of pain assessment. Medical \nHumanities 49 (4): 593–603.\nMiddleton, A. 2022. The datafication of pain: Trials and tribulations in measuring phantom limb pain. \nBioSocieties 17 (1): 123–144.\nNetherland, J., and H. Hansen. 2017. White opioids: Pharmaceutical race and the war on drugs that \nwasn’t. BioSocieties 12:217–238. https:// doi. org/ 10. 1057/ biosoc. 2015. 46.\nOdero, A., M. Pongy, L. Chauvel, B. Voz, E. Spitz, B. Pétré, and M. Baumann. 2020. Core values that \ninfluence the patient—Healthcare professional power dynamic: Steering interaction towards partner -\nship. International Journal of Environmental Research and Public Health 17 (22): 8458. https:// doi. \norg/ 10. 3390/ ijerp h1722 8458.\nParker, C. M., and H. Hansen. 2022. How opioids became “safe”: Pharmaceutical splitting and the racial \npolitics of opioid safety. BioSocieties 17:577–600. https:// doi. org/ 10. 1057/ s41292- 021- 00230-y.\nRaffaeli, W., M. Tenti, A. Corraro, V. Malafoglia, S. Ilari, E. Balzani, and A. Bonci. 2021. Chronic pain: \nWhat does it mean? A review on the use of the term chronic pain in clinical practice. Journal of \nPain Research 14: 827–835.\nRoberts, C., K. Valentine, and S. Fraser. 2009. Rationalities and non-rationalities in clinical encounters: \nMethadone maintenance treatment and hormone replacement therapy. Science as Culture 18 (2): \n165–181.\nRobinson, C. L., A. Phung, M. Dominguez, E. Remotti, R. Ricciardelli, D. U. Momah, S. Wahab, et al. \n2024. Pain scales: What are they and what do they mean. Current Pain and Headache Reports 28 \n(1): 11–25.\nSakslin, M. (2021) Kipupotilaiden hoito (report no. EOAK/8381/2020). Parliamentary Ombudsman of \nFinland. https:// www. oikeu sasia mies. fi/r/ fi/ ratka isut/-/ eoar/ 8381/ 2020, accessed 14 June 2024.\nSandman, L., and C. Munthe. 2010. Shared decision making, paternalism and patient choice. Health Care \nAnalysis 18:60–84. https:// doi. org/ 10. 1007/ s10728- 008- 0108-6.\nScarry, E. 1985. The body in pain: The making and unmaking of the world. New York: Oxford University \nPress.\nSeear, K. 2014. The makings of a modern epidemic: Endometriosis, gender and politics. Farnham: \nAshgate.\nSointu, E. 2017. ‘Good’ patient/’bad’ patient: Clinical learning and the entrenching of inequality. Sociol-\nogy of Health and Illness 39:63–77. https:// doi. org/ 10. 1111/ 1467- 9566. 12487.\nSteinmetz, D., and H. Tabenkin. 2001. The ‘difficult patient’ as perceived by family physicians. Family \nPractice 18 (5): 495–500.\nStonington, S. 2021. ‘Acute-on-chronic’: Emergency affect and the one-way staircase of pharmaceutical \nescalation. Medical Anthropology 40 (3): 228–240.\nTaylor, H., A. Kotlyar, and V. Flores. 2021. Endometriosis is a chronic systemic disease: Clinical chal-\nlenges and novel innovations. The Lancet 397 (10276): 839–852.\nThompson-Lastad, A., and S. Rubin. 2020. A crack in the wall: Chronic pain management in integrative \ngroup medical visits. Social Science & Medicine 258 : 113061. https:// doi. org/ 10. 1016/j. socsc imed. \n2020. 113061.\nTosti, C., A. Biscione, G. Morgante, G. Bifulco, S. Luisi, and F. Petraglia. 2017. Hormonal therapy for \nendometriosis: From molecular research to bedside. European Journal of Obstetrics & Gynecology \nand Reproductive Biology, SI: Endometriosis 209: 61–66.\nvan Hout, F., A. van Rooden, and J. Slatman. 2023. Chronicling the chronic: Narrating the meaningless-\nness of chronic pain. Medical Humanities 49 (1): 1–8.\nVannuccini, S., S. Clemenza, M. Rossi, and F. Petraglia. 2022. Hormonal treatments for endometriosis: \nThe endocrine background. Reviews in Endocrine and Metabolic Disorders 23(3): 333–355.\nWerner, A., and K. Malterud. 2003. It is hard work behaving as a credible patient: Encounters between \nwomen with chronic pain and their doctors. Social Science & Medicine 57 (8): 1409–1419.\n\n292 M. Temmes et al.\nWerner, A., L. W. Isaksen, and K. Malterud. 2004. ‘I am not the kind of woman who complains of every-\nthing’: Illness stories on self and shame in women with chronic pain. Social Science & MedIcine 59 \n(5): 1035–1045.\nWhelan, E. 2003. Putting pain to paper: Endometriosis and the documentation of suffering. Health: an \nInterdisciplinary Journal for the Social Study of Health, Illness and Medicine 7 (4): 463–482.\nWhelan, E. 2007. ‘No one agrees except for those of us who have it’: Endometriosis patients as an episte-\nmological community. Sociology of Health & Illness 29 (7): 957–982.\nWhelan, E. 2009. Negotiating science and experience in medical knowledge: Gynaecologists on endome-\ntriosis. Social Science & Medicine 68 (8): 1489–1497.\nYoo, Y.-M., and K.-H. Kim. 2024. Current understanding of nociplastic pain. The Korean Journal of Pain \n37 (2): 107–118.\nPublisher’s Note Springer Nature remains neutral with regard to jurisdictional claims in published maps \nand institutional affiliations.\nMaria Temmes  is a postdoctoral researcher in the project Gendered Chronic Disease, Embodied Dif-\nferences and Biomedical Knowledge (GenDis) at Tampere University. Her current research focuses on \npatient activism and biomedical management of endometriosis and hormonal migraine.\nElina Helosvuori  is a Postdoctoral Researcher and Core Fellow at the Helsinki Collegium for Advanced \nStudies, University of Helsinki. Her current research focuses on intersections of medical practices and \nexperiences of chronic pain, as well as climate activism and reproductive imaginaries.\nVenla Oikkonen  is an Associate Professor at Tampere Centre for Science, Technology and Innovation \nStudies (TaSTI), Tampere University. She is the author of two books, Population Genetics and Belonging \n(2018) and Gender, Sexuality and Reproduction in Evolutionary Narratives (2013). Her current research \nfocuses on experiences of pharmaceuticals and self-tracking in endometriosis.","source_license":"CC0","license_restricted":false}