Chronic pain across clinical settings: the changing understanding of pain and its treatment in endometriosis

An ongoing shift toward multidisciplinary pain care and growing emphasis on non-pharmaceutical treatment are reshaping the parameters of how chronic pain is assessed and treated. The article explores these ongoing changes through a chronic gynecological illness, endometriosis. Drawing on interviews with clinicians, peo- ple with endometriosis and endometriosis activists in Finland, we ask how pain is understood and its treatment envisioned in cases where the standard course of endo- metriosis treatment does not alleviate pain. The analysis shows that difficult-to-treat endometriosis pain is conceptualized differently at different clinical sites includ- ing endometriosis clinics, pain clinics, emergency care, and primary care settings. We demonstrate that pain treatment in endometriosis is not fixed but constitutes an object of ongoing negotiations between the patient and clinician. In particular, ten- sions arise when patients move between the siloed clinical sites, and their pain is re-evaluated and approached through different epistemic framings of pain and pain care.

Chronic pain · Clinical encounters · Endometriosis · Medication · Multidisciplinary care · Opioids

The parameters of treating difficult, prolonged pain are shifting. Both biomedical literature and clinical practice increasingly highlight that chronic pain does not func- tion in the same way as acute pain, which has an identifiable cause, such as tissue damage. In chronic pain, the bodily mechanisms of sensing and responding to pain are altered. Therefore, the clinical management of chronic pain is seen to require a * Maria Temmes [email protected] 1 Faculty of Social Sciences, Tampere University, Tampere, Finland 2 Helsinki Collegium for Advanced Studies, University of Helsinki, Helsinki, Finland 272 M. Temmes et al. holistic “biopsychosocial” approach that addresses biological, psychological as well as social causes behind the pain (Cohen et al. 2021; Raffaeli et al. 2021). New treat- ment guidelines emphasize that the management of chronic pain should involve a multidisciplinary approach to pain treatment that combines both pharmaceutical and non-pharmaceutical care (Cohen et al. 2021). The organization of multidisciplinary pain care is also shaped by societal dis- cussions about what constitutes safe pain medication. Public concern about opioid overuse and addiction among chronic pain patients has placed pharmaceutical pain treatment under scrutiny (see Gollust and Haselswerdt 2021; Netherland and Hansen 2017; Parker and Hansen 2022; Stonington 2021). The discussion about opioid addiction has, in turn, drawn new attention to non-pharmaceutical treatment of pain, which is increasingly offered alongside, or instead of, pharmaceuticals (Thomp- son-Lastad and Rubin 2020). For example, the Finnish national guidelines for pain treatment emphasize that non-pharmaceutical interventions form the basis for pain management, and pain medications, especially opioids, should be prescribed only after careful consideration (Kipu. Käypä hoito -suositus 2017). Yet, it often remains unclear how to fully incorporate non-pharmaceutical care into established clinical practices (see Thompson-Lastad and Rubin 2020) or how to address chronic pain patients’ sudden increases in pain when the available treatment is not effective (see Stonington 2021). The article explores the challenges in managing severe, persistent pain in multi- disciplinary pain care through a common chronic gynecological illness, endometrio- sis. Endometriosis is often described, following clinical statistics, as a condition that affects around 10 percent of women globally (Horne and Missmer 2022; Taylor et al. 2021). It is characterized by the growth of tissue similar to the uterine lining outside the uterus, often in the pelvic or abdominal cavity (Hudson 2021). Endometriosis pain is typically linked to changes in estrogen levels during the menstrual cycle, which cause inflammation around endometriosis tissue, and it can range from mild to severely debilitating (Hudson 2021; Vannuccini et al. 2022). With the progres- sion of the illness over years, pain can be caused by a growing number of additional issues. These include endometriosis creating adhesions that tie tissues and organs together, endometriosis lesions close to nerves or around the gastrointestinal tract, as well as scarring from endometriosis surgery (Vannuccini et al. 2022). Furthermore, endometriosis can lead to sensitization of the nervous system, which is character - istic of chronic pain (Coxon et  al. 2023). The standard treatment for endometrio- sis consists of a hormonal product, which controls the body’s hormone levels and suppresses periods, and widely used painkillers, such as ibuprofen and paracetamol. However, in difficult cases of endometriosis, these medications may not be sufficient to alleviate pain. In such cases, clinicians often recommend multidisciplinary care that includes, for example, physiotherapy to cope with chronic pain (Coxon et  al. 2023). The article investigates what happens when the management of endometrio- sis pain takes place across multiple clinical contexts. Building on Stonington’s observation that pain is “an affective fact that both spills out of the temporal bounds of its presence and embroils others in its gravity” in clinical encounters (Stonington 2021: p. 236), we trace the ways in which severe endometriosis pain 273 Chronic pain across clinical settings: the changing… is enacted variedly as treatable or untreatable in situated clinical practices. Our analysis draws on interviews with people with difficult-to-treat cases of endome- triosis, clinicians treating endometriosis as well as endometriosis patient activists in Finland, and ethnographic observations at a specialized endometriosis clinic. Through these data, we trace moments of tension as well as new openings that emerge when patients and clinicians negotiate the changing parameters of treat- ing severe, prolonged endometriosis pain across different clinical settings. Previous feminist research has argued that gynecologists and endometriosis patients may have different epistemic frames for pain, which can lead to tensions in clinical encounters (Whelan 2003). Whelan (2003) stresses that clinical views of pain rely on patients’ descriptions of their embodied experiences. At the same time, the clinical conceptualization of pain is never an “objective reading of pain” but enacted in relation to existing clinical measuring standards for pain (Whelan 2003). This may lead to potential clashes between patients’ and clinicians’ epis- temic approaches to pain. What we add to this discussion is a further analysis of how pain is conceptualized in the practices of increasingly multidisciplinary pain treatment for endometriosis patients. While multidisciplinary pain treatment aims to better account for individual differences between patients, we show that dif- ferent specialists also enact different epistemic frames for pain. This can produce tensions in patients’ pain treatment, making the ideal holistic pain care unattain- able. We argue that good pain treatment requires acknowledging the epistemic framings that shape the treatment of pain. The article is structured as follows. First, we situate the article within previ- ous literature on challenges of assessing pain and on clinical encounters between patients and healthcare professionals. After introducing our data and methods, we move to the analysis, which is divided into three sections: the first explores con- ceptualizations of pain in different clinical settings, the second examines negotia- tions about treatment between clinicians and patients, and the third focuses on the challenges in offering holistic individualized treatment of pain. Throughout the analysis, we show that clinicians and patients operate with multiple, and some- times contradictory, conceptualizations of pain, which can lead to tensions in clinical encounters. In particular, a distinction between endometriosis pain and pain that has become chronic is mobilized differently in primary care, specialized endometriosis care, specialized pain care, and emergency care settings, giving support to different models of pain treatment—or enacting pain as untreatable at a particular site. We demonstrate that pain treatment in cases of severe endometrio- sis is an object of ongoing negotiations between the patient and the clinician. The siloed nature of treatment makes it challenging to predict how treatment is organ- ized at another site, causing uncertainty and stress for those living with chronic pain. As endometriosis patients with severe pain move between clinical sites, the question of what is adequate yet sustainable pain care may be re-addressed from a different clinical viewpoint. While this may lead to a recognition of a previously dismissed pain, it may also result in a previously recognized pain being trivial- ized and the rationale of treatment being challenged. 274 M. Temmes et al. Previous research on pain and clinical encounters How pain should be conceptualized, assessed, and treated is an object of epis- temic struggle across medical practice. The medical definition of pain balances between personal descriptions of pain experiences and the aim of clinically meas- uring the described pain. As the International Association for the Study of Pain notes in their 2020 definition, pain “is always a personal experience that is influ- enced to varying degrees by biological, psychological, and social factors” (IASP 2020). In the clinical context, the measurement of individual pain is done, for instance, in relation to various pain scales that aim to classify the intensity of pain experience (Robinson et al. 2024). One of the examples of a pain scale is the Visual Analog Scale for Pain (VAS scale), in which the patient is asked to evalu- ate their pain from 1 to 10, that is, from no pain to the “worst imaginable pain” (Hawker et al. 2011: p. S240). However, the datafication of pain does not easily capture the lived and rela- tional experiences of pain. In an ethnographic study of a clinical trial examin- ing phantom limb pain, Middleton (2022) argues that it is pivotal to ask what information is used to define pain and what, in the process, is left out. Moreover, researchers studying narration of pain have noted that it can be challenging to describe chronic pain, as persistent pain affects a person’s perception of the sever - ity of pain (Van Hout et al. 2023; Hovey et al. 2018; Mellor 2023). Furthermore, historical and social studies approaches to pain have noted that the knowledge and experience of pain is influenced by societal and medicalized approaches to pain (e.g., Boddice 2017, 2023; Scarry 1987; see also Seear 2014 on endometriosis pain). When pain is assessed in clinical settings, it does not happen in a historical vacuum, but reflects historically layered ideas of what constitutes pain and what kind of pain needs medical attention. Whelan (2009) notes that while the clinical aim of standardizing the description of endometriosis has historically led clini- cians to doubt patients’ descriptions of pain, patients’ symptoms have a key role in diagnosis and treatment of endometriosis. Whelan stresses that clinicians form “an epistemically flexible, application-oriented epistemological community” as their approach to patients’ symptoms is formed in relation to their previous clini- cal work experience as well as scientific research (Whelan 2009: p. 1495). The medical assessment of pain takes place within clinical encounters between patients and healthcare professionals. We approach clinical encounters as situ- ated and uneven negotiations about adequate care that shape how chronic pain is measured and conceptualized. Previous studies of the power dynamics in clinical encounters stress the need to further develop patient-centered care (Odero et al. 2020). Our research highlights the tensions that arise in negotiations concerning pain that is difficult to treat. In clinical decision-making, conflicts may occur as medical authorities as gatekeepers balance between an individual patient’s needs and wishes and other aspects of decision-making, such as medical and organi- zational demands concerning implementation of evidence-based clinical practice guidelines or limited resources (Hilden et al. 2021; see also Sandman and Munthe 2010). Following Whelan’s notion that clinical encounters can also be sites of 275 Chronic pain across clinical settings: the changing… “epistemic co-operation” (Whelan 2003: p. 477), we suggest that the definition of pain symptoms is always linked to the trust between the clinician and the patient. However, this trust might be difficult to obtain if there is a disagreement, for example, on what treatment options are medically justified. Uneven power relations are also manifested in the ways patients are categorized and attended to. Based on ethnographic fieldwork in a Danish hospital setting, Holen and Lehn-Christiansen (2010) argue that categories such as ethnicity, gen- der and class can have a profound effect on clinical encounters, for example, some patients come to be seen as more challenging than others. When these patients are viewed from the clinical perspective, “the ‘problem’ is never the hospital, nor the relationship between the hospital and the patients. The problem is individualized” (Holen and Lehn-Christiansen 2010: p. 57). In other words, clinical encounters not only reflect but also reinforce social inequality, as the problem that the treat- ment needs to address is translated into a characteristic associated with a patient group (Sointu 2017). Although our analysis does not focus on intersectionality, we want to acknowledge how factors such as ethnicity and class in addition to gender affect the power dynamics in clinical encounters and epistemic struggles around endometriosis. Previous studies on endometriosis indicate that the historical framing of endome- triosis as white career women’s disease and the dismissal of women’s descriptions of pain continue to limit the access to endometriosis diagnosis and efficient pain treatment (Griffith 2020; Hudson 2021; Jones 2021; Whelan 2009). The medical validation of difficult chronic pain through endometriosis diagnosis is meaningful to patients in terms of not only adequate care but also social recognition (Hallström 2024). Gendered aspects of clinical encounters as uneven negotiations have been reported also in fields closely related to endometriosis. For example, Werner and Malterud show how women with chronic muscular pain without a clear causative mechanism experience difficulties in performing as credible patients: they seek to appear “just right” in clinical encounters and “struggle to be perceived as somati- cally ill while simultaneously avoiding appearing mentally unbalanced” (Werner and Malterud 2003: p. 1414). In a similar vein, a study juxtaposing clinical encounters in menopausal hormone therapy and in methadone maintenance treatment suggests that in both cases, the health issues in question are seen to compromise patients’ rationality (Roberts et al. 2009). As a result, patients struggle to perform the kinds of rationality that are highlighted in biomedical discourses (Roberts et al. 2009). For medical verification of pain, concrete material proof may be required from the patients when they seek pain treatment. According to Hasson (2012), the diag- nosis of menstrual pathology shapes women’s position as participants in knowledge production. Physical evidence of bleeding may be taken as something that proves or disproves women’s complaints about pain symptoms. In the case of difficult pain, gaining verification may be especially difficult due to the subjective aspects of pain. Many people living with endometriosis struggle in translating the nuances of their pain to medical professionals and have therefore developed strategies for medical encounters, such as ways of describing the effects of pain as concretely as possi- ble (Bullo 2020; Griffith 2020; Helosvuori and Oikkonen, 2024). Endometriosis patient communities have also an important role in offering epistemic framing to 276 M. Temmes et al. conceptualize pain symptoms differently from the logic of clinical pain management (Lindgren and Richardson 2023; Whelan 2007). Furthermore, as we discuss in our final analysis section, patient activism can publicly challenge the existing ration- ale of pain treatment and question the availability of holistic care. As the studies discussed above have shown, pain treatment is a highly contested and politicized issue. We contribute to this literature by unpacking the tensions that arise when dif- ficult pain is managed across multiple clinical settings and their different epistemic framings. We argue that such tensions can be teased out by tracing the varying con- ceptualizations of pain between and within sites of care. Data and methods The data were collected as part of an endometriosis subproject within a larger social science research project on gendered chronic illness in Finland. The interview data consist of semi-structured interviews with 20 clinicians treating patients with endo- metriosis, 27 people diagnosed with endometriosis, and 12 patient activists. The clinicians include gynecologists, endometriosis nurses, sexual counselors, pain doc- tors, gastrointestinal surgeons, and pelvic floor physiotherapists. They work in pub- lic and private clinics providing specialized endometriosis care. The people with endometriosis are in their early 20s to late 40s in age and live across the country. Many of them have sought and received endometriosis treatment across the health- care system, including local healthcare centers, student healthcare, specialized public endometriosis clinics, and private gynecologists. While they all have been diagnosed with endometriosis, not all are currently patients at any healthcare set- ting. The patient activists include patient organization representatives as well as endometriosis activists who use their social media accounts to raise awareness and advocate for better treatment. The clinician interviews were conducted by Temmes and Helosvuori, the interviews with people with endometriosis by Helosvuori and Oikkonen, and the activist interviews by Temmes. In the analysis that follows, we focus on those interviews that discuss severe, difficult-to-treat endometriosis pain. In addition to the interviews, the article also draws on a two-week visit by Temmes to a public endometriosis clinic at a university hospital. The visit involved observing the working practices and the working space in the clinic. The fieldnotes from the visit include observations about how pain is described in the clinical meetings between clinicians and patients, between clinicians, and when individual clinicians explain their work. The research follows the ethical guidelines of the Finnish National Board on Research Integrity for research in the social sciences. We received written informed consent from all our interlocutors. The interviews were carefully  pseudonymized and only details relevant for this article are used in the analysis. For the ethno- graphic fieldwork at the endometriosis clinic, we received a research permit from the university hospital where the clinic is located following a positive ethics review by the humanities and social sciences ethics review board connected to Tampere University, the home institution of the project. As with the interviews, all personal details have been carefully removed from the fieldnotes and observations. 277 Chronic pain across clinical settings: the changing… The analysis was conducted jointly by the authors. We identified instances in the

where clinicians discuss the clinical options of and challenges in treating difficult-to-treat endometriosis pain, people with endometriosis describe how their pain has been assessed and how their pain treatment has been decided, and activists explain their view of structural and societal obstacles in accessing adequate pain care. Following multiple rounds of reading, we identified different conceptualiza- tions of pain at different clinical settings (such as specialized endometriosis care and specialized pain care) as well as situations (such as particular stages of illness or treatment). We also located tensions between how clinicians and people with endo- metriosis approach pain. While some of the tensions are pronounced, present, for example, in frustration expressed by our interlocutors, other tensions are more sub- tle—a slight difference in emphasis, for example—that may yet give rise to different expectations about what counts as effective pain treatment. Conceptualizations of endometriosis pain in clinical settings In the clinical management of endometriosis, pain is often conceptualized in relation to endometriosis lesions and the inflammation caused by them. One gynecologist describes the management of pain in endometriosis care: As the first-line treatment you have painkillers. Normal ones [ibuprofen and paracetamol] are good. But, to treat the cause behind the pain not the symp- tom, it would be good that [all patients] would start some type of hormonal medication, contraceptive pills, progesterone only pills or an IUD [intrauterine device]. The progesterone in them restrains inflammation. […] There are also different types of drugs that affect the nervous system that can be given simul- taneously. Some drugs for depression in small doses might reduce pain. In that situation, you’re not treating depression but pain. Some epilepsy medications can also help in pain management. The treatment of endometriosis pain, the excerpt indicates, addresses pain as a symptom as well as aims to control the reasons behind the pain. Hormonal medica- tion, in particular, is defined as a treatment that addresses the reasons "behind the pain, not the symptoms.” Currently, clinical guidelines consider hormonal products to be a key medication for all endometriosis patients as they impact the estrogen levels in the body, controlling the growth and bleeding of the endometriosis lesions (Tosti et al. 2017). Hormonal products, as our clinician interlocutor mentions, can be combined with anti-inflammatory medications such as ibuprofen as well as neu- romodulatory drugs that increase the pain threshold, which are also used in the treat- ment of depression and epilepsy. Surgery, as well as stronger hormonal products, remain alternative treatment pathways if the first-line treatment does not ease the pain (Taylor et al. 2021). Like hormonal medications, surgeries also target endome- triosis lesions as the cause behind endometriosis pain. The central role of endometriosis lesions in clinical definitions of endometriosis pain is also visible when clinicians describe patients whose pain does not respond to 278 M. Temmes et al. standard treatment. According to a gynecologist working at a specialized endome- triosis clinic: We have nowadays many young women that have a lot of disabling pain and when they come here, the pain might have already become chronic. Then you have to think about diagnostics, whether this is endometriosis or chronic pain and treatment for that. It’s a specific patient group, the people who might not have that much endometriosis findings. For them, the treatment needs to be holistic, maybe think about the hormonal treatment and treatment for chronic pain and additional care we can offer, like pelvic floor physiotherapy and sex- ual counseling and so on. This quotation addresses the well-known diagnostic delay in endometriosis, which has been linked to the dismissal of debilitating pain as “normal” period pain (Horne and Missmer 2022; Hudson 2021). To gain a referral to a specialized public endometriosis clinic in Finland, patients have to first seek help in primary healthcare or private clinics. Suggested by the quotation above, the lack of diagnosis might limit the ways in which endometriosis pain is managed, which can lead to a change in the epistemic framing of pain—that is, the pain may have become chronic. In the quotation, the demarcation between diagnosing endometriosis pain and diagnos- ing chronic pain indicates a shift in the conceptualization of pain. Chronic pain is seen as a problem of the central nervous system being stimulated so that even a nor- mal touch can trigger pain, as one endometriosis nurse working in an endometriosis clinic explained to Temmes. The gynecologists we interviewed consider it possible that chronic pain can develop also after endometriosis is diagnosed. However, such pain falls outside the framework of standard gynecological care for endometriosis and becomes an indicator for a subset of patients who need holistic, multidiscipli- nary care. The distinction between endometriosis pain and pain that has become chronic has been criticized also in the biomedical research on endometriosis. Coxon et al. (2023) note that endometriosis pain is often seen to be only nociceptive pain— meaning pain that originates from a tissue damage, in this case the endometriosis lesions. They argue that there is a need for further understanding of neuropathic pain (when lesions or other changes have damaged the nervous system) and nociplastic pain (when pain cannot be explained with any tissue damage but is caused by the sensitization of the nervous system) in endometriosis (see also Yoo and Kim 2024 for the distinction of different pain types). Expanding the understanding of different types of pain, Coxon et al. (2023) argue, stresses the need for the clinicians to con- sider carefully when surgery is needed, as tissue damage during surgery can induce neuropathic pain. Distinguishing between pain symptoms also makes visible that endometriosis treatment requires multidisciplinary collaboration to manage differ - ent kinds of pain. While the above quoted gynecologist, along with other specialized clinicians we interviewed, makes a distinction between endometriosis pain and pain that has become chronic, this does not mean that clinicians would not acknowledge the multitude of different types of pain related to endometriosis. For example, our gynecologist interlocutors emphasize the need to carefully consider when surger - ies with their associated risks of complications of pain are needed, or to suggest 279 Chronic pain across clinical settings: the changing… alternative pain management methods, such as physiotherapy, in the treatment of endometriosis patients. However, research has not addressed in detail the ways in which the conceptu- alization of pain shifts within and between different clinical settings and how these differences lead to different rationales of when and how pain should, and could, be treated. We locate these shifts at the intersections of different epistemic cultures that frame endometriosis treatment. For example, a physiotherapist stresses in an inter - view that rather than focus on a particular location in the body, they want to help the patients to relax the whole body: Patients’ normal state is often already tensed. Some might have tense shoul- ders all the time without realizing it. In that situation, when the pain hits that area, the tension is increased. Also the fear of pain in certain situations can increase the tension in the muscles. The pelvic floor reacts to psychological stress, even if the stress isn’t linked to the gynecological area. Relaxation has a huge impact. […] Sometimes patients say that it’s a relief to realize that the pain is caused by the muscle tensions. It’s easier to accept than [thinking] whether they have a new endometriosis lesion. The physiotherapist moves the treatment focus away from the endometriosis lesions to the overall tensions in the body. One of the physiotherapists we inter - viewed emphasizes that although endometriosis diagnosis, as well as possible prior endometriosis surgeries, can impact the treatment, this does not mean that there would be a standard treatment design for all patients. Instead, the treatment is always  designed “according to an individual plan, there are no two identical [patients].” At the same time, the aim of the treatment shifts to coping with the pain in daily life. Another physiotherapist emphasizes: The way of the world seems to be that [patients want help] fast, now and here, [and then have to] face disappointment and bitterness. In some [patients] it’s clear that they’ve never thought that there’s no immediate trick. […] [Our treatment focuses on addressing] possible problems in movement or functional ability. For example, that sexual intercourse would be less painful, walking would be easier, you could do different movements or take part in everyday activities and work. This statement shows that the shifts between clinical settings require that the patient understands the basis of their pain as well as the possibilities to control it in a new epistemic frame. Whereas hormonal products and anti-inflammatory painkillers used as the first-line treatment in endometriosis target the biological cause behind the pain, the management of chronic pain is focused on learning how to live with the pain. When endometriosis pain is considered to be chronic, patients can be referred to a pain clinic. This involves a shift in the epistemic framing of pain. The treatment in pain clinics is based on pharmaceutical and non-pharmaceutical treatment options, such as psychologist services and prescription of strong pain medications. Similarly 280 M. Temmes et al. to the physiotherapists we interviewed, a clinician working in a pain clinic stresses that they do not have any specific treatment to offer for people with endometriosis. Instead, the potential reason behind a patient’s pain is assessed: We usually don’t have any precision treatment to offer to a patient. But of course we aim to define whether the pain is nociceptive, caused by a tissue damage, or neuropathic, caused by a nerve damage, or nociplastic where pain sensitization has happened without us being able to show a tissue damage. We design our treatment based on this distinction. While the pain clinicians aim to define the type of pain that their patient might have, this definition is not based on the prior endometriosis diagnosis. Yet, endome- triosis diagnosis can direct clinicians’ assumptions of the origins of pain: If the patient has endometriosis, then their pain is likely linked to pain sensi- tization and we will map the possible medical treatment [at the pain clinic]. These patients often have also other types of issues and if we think of the psy - chosocial framework, we can find multiple types of [reasons behind the pain]. We can try to assess [different causes] and refer the patient to appropriate care. This quotation indicates that the prior endometriosis diagnosis directs clinicians’ expectations about what kind of pain treatment is effective. They may consider pain medication as well as address the so-called “psychosocial framework,” which stresses that changes in individual behavior, thinking and social aspects of life can help the patient to cope with the pain. This emphasis is not surprising considering that the first consultation at the pain clinic also includes a meeting with a psycholo- gist. Patients can also consult a psychiatrist or a social worker depending on their needs. As treatment in the specialized care usually lasts from six months to a year, pri- mary care and—if financially possible for the patient—private clinics remain the main sites where people with endometriosis seek help for the management of their pain. Furthermore, as endometriosis is a chronic condition often lasting for decades, people’s treatment paths are not linear but move back-and-forth between these sites. For example, new endometriosis findings can shift the focus back from chronic pain to endometriosis pain when a new surgery is planned. Thus, the line between endo- metriosis pain and chronic pain is not set in stone in clinical practices. Nevertheless, the above examples about physiotherapy and pain clinic emphasize the need for the patient to re-conceptualize the root of their pain for their pain management in new clinical contexts. The above examples show that the understanding of pain and its treatment has changed in recent years, evident, for example, in clinicians’ consideration of poten- tial tissue damage caused by surgeries and the need to account for different types of pain mechanisms in endometriosis patients. Likewise, the need for multidiscipli- nary treatment for endometriosis patients is widely acknowledged in the specialized endometriosis and pain care settings. Yet, the move between clinical sites poses sig- nificant challenges for patients. For example, differing explanations for pain symp- toms, once made in the clinical settings, can follow the patients between sites. One 281 Chronic pain across clinical settings: the changing… of our interlocutors with endometriosis describes her experiences with an inaccurate but persistent clinical diagnosis: I remember that [the gynecologist] had a dictation recorder, and there was also a midwife or a secretary who wrote down things. The diagnosis I received was stomach ache, and it followed me a long time. Every time I went somewhere, all the doctors said you have the stomach ache. I have never had stomach ache even in connection to endometriosis. My stomach has always been fine. It’s almost the only part of me that has always been fine. This excerpt describes the challenges involved when pain management relies on multiple different clinicians relying not only on patients’ descriptions—which can be misinterpreted as well—but also on other clinicians’ notes. In this case, it was only in the meeting with a psychologist at the pain clinic when the interlocutor’s account of being misdiagnosed was taken seriously. This example shows that the clinical encounters never happen in a vacuum. When a patient moves between clini- cal settings, earlier medical appointments continue to structure how symptoms are brought into a new epistemic framework. Thus, our analysis suggests, epistemic frames for pain in endometriosis not only shift across clinical settings but are also enacted in relation to one another. As endometriosis patients move in-between clini- cal settings and conceptualizations of pain, previous bad experiences can make it difficult to establish a trusting clinical relationship. Negotiations between doctors and patients: establishing trust in shifting contexts One of the biggest recent changes in the treatment of pain has been the increasing awareness of the potential dangers of prescribing opioid-based pain medication. In our interviews, gynecologists often emphasize that they do not prescribe strong pain medications, such as opioids, in endometriosis treatment. One gynecologist notes that opioids “do not in principle belong to the treatment of endometriosis” and they should only be used in short-term treatment such as immediately after a surgery to treat post-surgery pain. Because endometriosis patients are often young, many of our clinician interlocutors prefer not to prescribe opioids as the patients would need to use them for a long period of time and, according to one gynecologist, eventu- ally opioids “could even make the pain worse”. Another gynecologist describes the development of addiction: In these sad situations when [the patient] is caught in a vicious circle with the strong pain medications—they are challenging situations. Endometriosis as a disease exposes patients to [the development of the vicious circle] as [the patient] has chronic pain and starts to use opioids. This is a patient group in serious risk for the misuse of drugs. This statement echoes the point we made in the previous section: the distinc- tions made between pain caused by endometriosis lesions, temporary pain caused 282 M. Temmes et al. by surgical intervention, and pain that has become chronic frame the logic of treatment. While opioids are prescribed for acute surgery-related pain, long- term treatment with opioids is considered a risk due to potential development of addiction. In cases when strong pain medication is prescribed, moving between clinical contexts can cause additional stress for people with endometriosis. One of our interlocutors with severe endometriosis describes her experiences when seeking help during a debilitating pain attack. When she told the emergency ward staff that she had a prescription for an opioid-based pain medication by a well-known endometriosis specialist, her account was challenged: The nurse didn’t believe me and went to check in the national digital patient record system whether I had a prescription and who the doctor was. Then they said, well, yes, I can see it here. It was insulting. I was in so much pain, and yet they tried to turn me away. First they said that they can’t give me anything stronger, but I was stubborn, I said I don’t care whether you give me something, but I can’t be at home. Then they said reluctantly that they’ll treat me, but they’ll do lab tests, so be prepared. We’ll test your blood and urine if you stay here. It’s not a problem for me so I said do whatever tests you want. I don’t care, I just want this pain to end. I gave all the samples. I don’t know what they really tested, but I felt that I was being threatened. While stronger pain medication was administered in the end, the association between opioids and addiction framed the clinical encounter where the patient’s description of her pain was doubted, and further tests were seen as a way to con- firm these doubts. We encountered similar stories from other interlocutors with endometriosis. While many did not have any personal negative experiences, they were still aware of the possibility that their pain, and their need for pain medication might be doubted in future clinical encounters. Difficult encounters between patients and clinicians have been addressed in previous literature in terms of how patients are seen as “good” and “bad” or “difficult” (see e.g., Sointu 2017; Werner et al. 2004). Steinmetz and Tabenkin (2001) show that instead of considering particu- lar cases as medically challenging, physicians may assess patients themselves as being difficult when patients have multiple and unspecified “complaints” and psy - chosomatic issues—which is often the case in several gendered conditions. This tension can be felt by the patients, who struggle not only with their chronic condi- tion but also with how to perform themselves as someone who is not “the kind of woman” who complains about everything (Werner and Malterud 2003: p. 1035). Our study shows that the question of medical validation of pain and adequate medication raises tension across multidisciplinary endometriosis care and is per - sonally felt by patients as they seek care in different clinical settings. Awareness of the public discussion on opioid use for chronic conditions shapes people’s expectations about communicating with clinicians about strong pain medication. One interlocutor describes her experience in getting a prescription renewed in the primary care: 283 Chronic pain across clinical settings: the changing… One doctor had accidentally cancelled all my prescriptions and had writ- ten that temporary medication had been discontinued in agreement with the patient. I have a chronic illness. This is medication for that illness. It’s not temporary. I had to call another doctor at the health center and ask them to write a new prescription for [the opioid-based medication] and other medi- cations. I was so stressed about the possibility that I might not get it. It was originally prescribed by a doctor in private healthcare so apparently it didn’t show in the health center patient records. She tells about another incident at the health center when she was asked whether she had a prescription for the opioids that she had told them that she was taking. She felt that the healthcare staff considered the possibility that she might have been using a friend’s opioids. Negotiations in the clinical settings are often full of fear and stress for the peo- ple with endometriosis as they must explain why they request a medicine associ- ated with an addiction risk. The same interlocutor describes the effects of these encounters: Although I’ve always been able to get [my medication], I have this constant concern that what if I can’t get it. It’s said that people are addicted to opi- oids and they demand a particular medication. Of course I ask for a specific medication because it’s the one that works for me. Previous research suggests that describing chronic pain in a clinically mean- ingful manner is challenging in any situation as patients struggle to scale the experienced pain or describe their pain mainly as physical against clinicians’ view of pain as biopsychosocial (Declercq 2023; Mellor 2023). The examples of stress and fear in endometriosis pain management, as in the quotation above, illustrate the lived effects of the changing politics around pain medication. Such politics shapes the clinical expectations about appropriate pain management as well as the ways in which patients prepare to describe their pain. Negotiations of pain management between clinicians and patients can thus be highly tense situ- ations where the concern about addiction development can overrule the need to treat pain. Several interviews with people with endometriosis include concern about potential situations in which the patient is not prescribed any effective pain medi- cation and has to go to the emergency ward when excruciating pain hits. In these worst-case scenarios, maintaining existing effective pain medication is seen as essential. Some interlocutors with endometriosis mention pain clinics as espe- cially daunting clinical settings as they were concerned that pain clinicians would have the final say on the continuation of the existing pain medication. While strong pain medications are prescribed in the pain clinic, pain clinicians try to avoid continuously prescribing them for chronic pain patients. A pain clinician explains: If there’s any evidence that [the opioid-based medication] works and the doses are reasonable, we might continue [to prescribe it]. But often it is 284 M. Temmes et al. thought that with young people, whose problem can continue for decades, it is one of the biggest decisions you can make in pain management, to start strong opioids for the patient. […] You need to discuss with the patient how the treatment is organized, with what kind of doses and how the medicine is used. So that from the start the patient is aware that this is not an unprob- lematic substance, and its proper use is the key. While the excerpt stresses that opioid-based medication should be avoided with young people, it also notes that strong pain medication can be continued if there is evidence that it is effective as well as an agreement between clinician and patient about how to use it. These views follow the nationwide guidelines for the treatment of pain in Finland, which stress extensive caution when prescribing opioids to chronic pain patients to avoid addiction or developing tolerance for pain  medication (Kipu. Käypä hoito -suositus 2017). Still, the guidelines state that opioids can be prescribed in a well-established clinical relationship with the patient and after assessing that the patient is in a stable psychosocial state (Kipu. Käypä hoito -suositus 2017). In other words, both the statement of the pain clini- cian as well as the nationwide guidelines illustrate how paramount the established relationship between the parties is in pain management. Clinical encounters, especially when pain is treated with opioids, are, then, shaped by the trust between the patient and the clinician. One pain clinician, when asked about the role of trust at the pain clinic, mentions that they have had some cases where patients have misused the prescribed medication, which has felt like a betrayal. Still, the pain clinician emphasizes the role of trust in clinical encounters: The clinician usually believes that the patient is right and talks about their experiences [honestly]. But what is the correct treatment is another thing altogether—that is something for the clinician to decide. Of course this goes the other way as well. If the encounter between the clinician and the patient is unsuccessful—meaning that the patient feels that they have been mis- treated—this is something that shapes the future encounters as well. In this way, gaining trust is at the heart of the treatment. This clinician’s description of the centrality of trust in pain treatment—be it pharmaceutical or non-pharmaceutical—underscores that treatment relations in chronic illness need to be maintained over time. Previous bad experiences can have an impact on the clinical relationship, especially when a patient hopes to receive strong pain medication. Similarly, our interviews with people with endometriosis show that the trust in an individual clinician can help to alleviate fear of going to the pain clinic. An interlocutor describes her situation: I heard last week that my pain has likely become chronic. Now I have an appointment for a gynecologist so that they can make a referral to the pain clinic. If I hear that it’ll be the same doctor who treated me [at the pain clinic] for another pain before, then I’m not nervous at all. Then I’m look - ing forward to it. 285 Chronic pain across clinical settings: the changing… She continues to explain that if, however, she is assigned another doctor at the pain clinic, she will cancel her appointment as she has heard worrying stories about the other doctors, for example, that they have canceled prescriptions for strong pain medications. This stark differentiation between clinicians illustrates how fears and anxieties around pain management can become attached to particular clinicians based on personal experiences as well as accounts by peers. Previous research has shown similar tensions in negotiating opioid-based treat- ment in chronic pain management (Dassieu et al. 2021; Matthias et al. 2020). How - ever, our data suggest that trust between patients and clinicians has a central role also in  situations when a clinician needs to convince patients to take strong pain medications. One person with endometriosis describes such a situation: I have heard a lot about people having problems getting effective pain medica- tion, but I haven’t had any problems. I think it depends on the doctor. In the private sector, where I’ve seen doctors who know endometriosis, they’ve in fact encouraged using [pain medication]. Of course not in the sense that go ahead use opioids. But so that if you can’t cope with the ibuprofen and paracet- amol, then you need to take this. It might have been also because I have men- tioned that I don’t like taking medication. They have encouraged and explained how the pain mechanism works and how pain can become chronic, and how harmful that can be. In the interview, she also describes a visit to an emergency ward during a pain attack. Although the standard pain medication had not worked, she expressed doubts about the strong pain medication she was offered. A doctor had then arrived and explained that she really needed it to stop the pain. The rationale of strong pain med- ication preventing pain from becoming chronic was invoked as the doctor explained how enduring pain can make it worse in the long run. This example shows how shifts between pain conceptualizations can impact pain management: a patient’s trust in clinicians is formed in relation to a new understanding of pain mechanisms. Trust, then, enables patients and clinicians to move across different epistemic approaches to pain. Possibilities for individualized care: toward holistic treatment of chronic pain? The changing practices in pain treatment, especially in the treatment of chronic pain, have encountered criticism from patients. Patient activists have stressed that the treatment of chronic pain patients in Finland is inadequate. For instance, a complaint was filed with the Parliamentary Ombudsman in 2020, signed by over 900 people. According to the website of the Chancellor of Justice, a complaint can be made if “there is reason to suspect that an authority or other person or body performing a public duty has acted unlawfully” (Chancellor of Justice n.d.). The complaint stated that individual differences between chronic pain patients are often not considered especially in the pain clinics and that no one oversees the care pathway, which has led to a situation where individualized care is not adequate or is completely missing. 286 M. Temmes et al. The complaint resulted in the Parliamentary Ombudsman requesting the national supervisory authority for welfare and health, Valvira, to collect information about pain treatment from all hospital districts in Finland. In their official response to the complaint in 2021, the Parliamentary Ombudsman confirms that most care provid- ers follow the legal requirements and states that nationwide pain treatment guide- lines are followed. However, they raise a concern over timely access to treatment, lack of trained specialists in pain treatment, and problems with offering treatment options from different specialists (Sakslin 2021). The complaint to the Parliamentary Ombudsman highlights the expectations and challenges of individualized chronic pain management in Finland. In our data, we encounter descriptions by clinicians as well as people with endometriosis of prob- lems in the treatment of endometriosis-related chronic pain. Clinicians find the siloed nature of pain treatment a significant problem—especially the limited com- munication between primary care and specialized clinics. The lack of communica- tion, they suggest, impacts pain treatment before endometriosis diagnosis as well as after it. One endometriosis nurse, for example, notes that especially the medications aiming to increase the pain threshold are sometimes started too late to prevent pain becoming chronic. Furthermore, while clinicians note the need for a holistic treat- ment of pain, they also acknowledge that treatment options for patients with chronic pain are limited. According to one gynecologist: It is a challenging patient group: as no one can really help them, they don’t really belong anywhere. Even if the principle is that chronic pain should be treated in primary health care, they don’t have the resources to do that. I’ve talked about this with at least [two hospitals’] endometriosis doctors and these same problems are present everywhere. The quotation indicates that the need for better treatment for endometriosis patients whose pain has become chronic is acknowledged by endometriosis special- ists. Still, there is a sense that this care is outside the scope of gynecological units, where specialized endometriosis treatment is organized. Similarly to the ombuds- man’s statement, our clinician interlocutors consider the lack of resources as the main problem in organizing effective pain treatment. Importantly, patients’ criticism about the management of chronic pain is directed not only at the increasing hesitation to prescribe opioid-based medication but also at the absence of adequate non-pharmaceutical treatment outside specialized endo- metriosis clinics. The 2020 complaint to the Parliamentary Ombudsman notes that “especially non-medical methods are non-existent in certain locations and [doctors’] competence varies” (Sakslin 2021). This note echoes our interviews with people with endometriosis, many of whom see non-pharmaceutical treatment methods as relevant but inadequate. One interlocutor notes: I know there are people who find non-pharmaceutical treatments effective. I know I’m not the only one whose symptoms they alleviate. But it’s not enough that I’ll do exercises on my own. There’s also an interactive aspect, there needs to be someone who knows what you can do in a situation where you feel that you can’t do anything. I can’t be my own carer. Non-pharmaceutical treatment 287 Chronic pain across clinical settings: the changing… doesn’t mean that I could just decide to take care of myself, it requires regular support from a professional. This quotation indicates the need for regular meetings with professionals, such as physiotherapists, to ensure the long-term impact of non-pharmaceutical treatment. However, as the first analysis section showed, long-term treatment is often una- vailable for people with endometriosis. Even if they are referred to physiotherapy, they can access it in specialized care only for a limited time. One physiotherapist describes how patients usually visit a physiotherapist three to five times “to see how things are progressing.” She adds, “If there’s no response to the treatment, we don’t continue. One can’t come here for months or for years as this is specialized care and [focused on] acute care.” This comment is an important reminder that while special- ized care for endometriosis patients does contain diverse pain management methods, the long-term care that endometriosis patients with chronic pain often want is not available. The situation is different for those who can afford accessing treatment in private clinics. Many of our interlocutors describe how they have visited a gynecologist or accessed non-pharmaceutical treatment such as physiotherapy in the private health sector. Still, the negotiations about pharmaceutical pain management we described in the second analysis section happen both in public and private clinics, indicating that access to effective pain treatment is not only about resources but involves chal- lenges in coping with the stress of shifting clinical settings and epistemic framings of pain. Thus, while increasing non-pharmaceutical treatment options is seen as cru- cial by all our interlocutors, our data suggest that further consideration needs to be given also to the stressful epistemic shifts that happen in the treatment of endome- triosis pain as patients move across clinical settings. Considering the limited treatment options, it comes as no surprise that many cli- nicians and patients place their hope in the future development of new treatment options. In chronic pain treatment, new approaches in neuromodulation are explored but, as one gynecologist notes, the treatment is highly expensive and is not effective for everyone. Hope is also often placed on the development of new endometriosis medications. This hope extends in some cases to current patients who participate in the clinical trials of new pharmaceuticals. However, for the endometriosis patients whose pain has become chronic, or who might have other conditions besides endo- metriosis, these clinical trials are often out of reach. One interlocutor with endome- triosis explains: I tried to enroll in a clinical endometriosis study in which they were devel- oping a non-hormonal medication. The person I had emailed called me and interviewed me on the phone. Then they said that they are so sorry, but they can’t include me in the study because my situation is too difficult. It felt like, I don’t know. Sometimes the situation makes me really depressed, but I try to think that new treatments are being developed and perhaps there will be one that would work for me. This account resonates with a broader issue in the development of clinical tri- als for new endometriosis medication, which tend to “focus on treatment of the 288 M. Temmes et al. endometriosis lesion by surgical or medical approaches, rather than considering [endometriosis associated pain] as a chronic pain condition” (Coxon et  al. 2023: 598). This can limit the type of endometriosis patients admitted to the trials, mean- ing that the results of the trials do not necessarily benefit those patients whose pain has become chronic. Different ways of defining, assessing, and classifying endome- triosis-related pain, then, impact not only existing treatment practices but also the ways in which future treatment that reaches beyond the existing epistemic framings is imagined.

Chronic pain that stems from endometriosis can manifest itself in multiple ways. In the case of debilitating pain symptoms that are not alleviated with standard methods such as hormones and anti-inflammatory painkillers, endometriosis patients often end up seeking help at emergency wards, private gynecologists, and—through refer - ral—specialized endometriosis or pain clinics. At this point, their pain has often been enacted as untreatable at previous sites of treatment. We have shown in this article that the understanding of difficult endometriosis-related pain differs across clinical settings, and that these different ways of framing pain result in different rationales of treatment. Pain can be directly linked to endometriosis lesions, which hormonal or surgical interventions then target. At other times, the target of the treat- ment can be the nervous system, which is intertwined with the chronicity of pain. In other words, multiple, intersecting and changing framings shape clinical practices and care pathways of the patients. We have identified medical and societal shifts taking place in both ideas and prac- tices of managing difficult endometriosis pain. The so-called opioid crisis has given rise to concerns about the accountability of the clinicians who prescribe poten- tially addictive pharmaceuticals as well as worry among patients that they may not be able to continue medications that they experience as the last resort of help. At the same time, non-pharmaceutical methods of pain management such as pelvic floor physiotherapy are becoming more common, and evidence is accumulating on how they may provide significant tools for living with endometriosis. Both the ques- tion of effective yet sustainable medication and the question of non-pharmaceuti- cal pain treatment are linked with the current policy aims of implementing holistic approaches in endometriosis care. Based on our observations, both clinicians and patients invest hope in holistic care that would challenge the siloed nature of health- care services. Clinical settings provide the stage for the enactment of these societal and medi- cal developments around chronic pain. We have shown in the analysis, firstly, how the shifting conditions of treatment require re-conceptualization of pain by clini- cians and patients. Chronic pain is approached differently than pain that has a direct physiological link with endometriosis. In the best-case scenario, pain that has not yet turned chronic may disappear after appropriate treatment measures. The integra- tion of non-pharmaceutical treatment options, in turn, sheds light on the multiplicity of chronic pain and its mechanisms. Secondly, we have explored the ways in which 289 Chronic pain across clinical settings: the changing… the question of trust comes to play in clinical encounters concerning the possibili- ties to treat difficult persistent pain with possibly addictive pharmaceuticals. The question of trust is twofold: clinicians have to trust that the patients are not seek - ing intoxicating substances, while patients share experiences with each other as to which clinician’s expertise to trust. Thirdly, we have shown how the siloed nature of pain treatment is deemed as inadequate by both clinicians and people seeking care. Hope is thus invested in future treatment procedures that would include holistic and individualized perspectives as well as both pharmaceutical and non-pharmaceutical treatments. Hope is also attached to the prospect of structural changes in how pain care is organized and facilitated in Finland. Our analysis is in line with previous studies that show the ways epistemic ques- tions provoke struggles and disputes. Stakeholders might share different views on measurements and verifications of pain. Feminist research has shown how societal assumptions of what women’s pain is have shaped the ways in which pain is evalu- ated, encountered, and lived through in gendered conditions such as endometriosis. In addition to supporting these analyses, our study adds to the understanding that sufficient pain care requires structural support that is often lacking in the case of chronic conditions. However, by focusing on epistemic framings and shifting con- ceptualizations of pain, our research highlights that the question of how to treat dif- ficult endometriosis involves much more than resources to improve the structures of healthcare. It also involves acknowledging tensions between the epistemic framings of different sites of endometriosis care—tensions that leave patients confused, frus- trated, and concerned about whether their pain will be recognized and addressed. Finally, our analysis of the changes in pain treatment highlights that clinicians and patients share a mutual interest: to enable the conditions for living with as lit- tle pain as possible. Despite differing positions and power relations, both clinicians and patients face structural problems while pursuing this goal. The question of how to integrate and negotiate the different aspects of difficult-to-treat pain in clinical settings and in patients’ everyday lives thus remains a burning societal and public health issue. Funding Open access funding provided by Tampere University (including Tampere University Hospital). The research was funded by the Research Council of Finland (grant 339143) and Kone Foundation (grant 202008728). Declarations Conflict of interest On behalf of all authors, the corresponding author states that there is no conflict of interest. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Com- mons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission 290 M. Temmes et al. directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/ licenses/by/4.0/.

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Maria Temmes is a postdoctoral researcher in the project Gendered Chronic Disease, Embodied Dif- ferences and Biomedical Knowledge (GenDis) at Tampere University. Her current research focuses on patient activism and biomedical management of endometriosis and hormonal migraine. Elina Helosvuori is a Postdoctoral Researcher and Core Fellow at the Helsinki Collegium for Advanced Studies, University of Helsinki. Her current research focuses on intersections of medical practices and experiences of chronic pain, as well as climate activism and reproductive imaginaries. Venla Oikkonen is an Associate Professor at Tampere Centre for Science, Technology and Innovation Studies (TaSTI), Tampere University. She is the author of two books, Population Genetics and Belonging (2018) and Gender, Sexuality and Reproduction in Evolutionary Narratives (2013). Her current research focuses on experiences of pharmaceuticals and self-tracking in endometriosis.