Anything but Endo: Diagnostic Buck-Passing in Endometriosis Diagnosis

Rita Dexter: writing – original draft, writing – review and editing, data curation, formal analysis. Megan Kitts: writing – original draft, writing – review and editing, data curation, formal analysis. Heather Welty: investigation, writing–original draft, writing–review and editing, data curation, formal analysis. Melanie Jeske: conceptualization, investigation, writing – original draft, methodology, writing – review and editing, formal analysis, data curation, supervision, resources, project administration.

To make our case, we draw on data from an ongoing sociological study of endometriosis led by Jeske. This analysis utilises interviews conducted with people living with endometriosis across the life course ( n  = 52) between 2023 and 2025. Interviews followed a semi‐structured, open‐ended format and lasted between 32 and 105 min. Interviews were conducted in person or via videoconference. Participants were eligible if they were over 18 years of age, currently residing in the United States and diagnosed with endometriosis or endometriosis‐like symptoms. We advertised online through social media postings as well as in physical locations, including OB/GYN offices, academic medical centres, community clinics and organisations, and by word of mouth. Participants were provided with a 30 USD gift card upon completion of the interview. Table  1 presents participants’ demographic characteristics. Participants’ demographic characteristics. All interviews were recorded and professionally transcribed verbatim with identifying information removed. For privacy and confidentiality purposes, we used pseudonyms for all study participants and altered any identifying information in this manuscript. Interview transcripts were uploaded to MAXQDA, a qualitative analysis software, for coding purposes. Data were coded and analysed using a modified constructivist grounded theory approach (Charmaz  2014 ). The first 15 interviews were open‐coded, after which the research team created a focused codebook using the open codes as well as a priori codes based on study aims and existing scholarship on illness experience and endometriosis. Once the codebook was developed, all interviews were coded using the 78 codes in the codebook by Jeske and Welty. To ensure intracoder and intercoder reliability, research team members periodically jointly coded the same transcripts. Any identified discrepancies were discussed and reconciled in team meetings. Analytic memos were written throughout data collection and analysis by team members and discussed during research team meetings. We analysed data coded with the following labels: diagnostic journey, diagnostic uncertainty, interacting with healthcare providers, feeling frustrated, experiencing uncertainty, feeling defeated, normalising pain and doubting lived experience. The authors iteratively memoed on all coded data, consistent with constructivist grounded theory practice (Charmaz  2014 ). In several team meetings, we discussed the coded data and the theme of diagnostic buck‐passing that was emerging in the data, a concept we put forward in this article.

Drawing on our research with PLE, we develop the concept of diagnostic buck‐passing. Diagnostic buck‐passing is a phenomenon in healthcare where individuals seeking treatment end up in a cycle of seeing different providers in ranging specialities, leading to prolonged diagnosis (see Figure  1 ). It occurs when clinicians defer diagnostic responsibility to medical specialities other than their own due to uncertainty and potential multiplicity of symptom aetiology. Specifically, diagnostic buck‐passing occurs when individuals experience symptoms that could be attributed to different organ systems, leading providers to under‐recognise or misrecognise the relevance of the symptoms to their own diagnostic process. As medicine has become increasingly specialised (Starr  1982 ; Weisz  2003 ), more people seeking healthcare fall within the scope of practice of numerous specialities (Weisz  2006 ; Clarke et al.  2003 , 2023 ). The problem arises when no specialist in particular takes on the responsibility to diagnose and treat one's symptoms and instead refers that person to another provider with different specialised knowledge. In this section, we characterise diagnostic buck‐passing and attend to the conditions under which it emerges, grounding this conceptualisation using the case of endometriosis diagnosis. Critically, although diagnostic buck‐passing is a normative concept, it does not assign blame to individual clinicians, nor is it grounded in speculation about their motivation. Rather, we argue that diagnostic buck‐passing is a structural feature of care and is evidenced through its consequences for people seeking care. Diagnostic buck‐passing. Consider Likhita, currently 24 years old, who began seeking care for abnormal periods as a teen, when she would get her periods twice a month. During university, she sought care again when she experienced pain during penetrative sex, pain while urinating and chronic abdominal pain. She went to urgent care almost monthly, often thinking she had urinary tract infections (UTIs). Providers typically prescribed her antibiotics for a suspected bladder infection or UTI, despite the tests for these infections coming back negative. As her medical bills accumulated, she stopped visiting urgent care, noticing that the symptoms often diminished on their own after several days without any medication. Likhita's OB/GYN referred her to a urologist, where she underwent a cystoscopy, an examination of the bladder and urethra through the insertion of a small camera, an experience she described as excruciatingly painful. Afterwards, the urologist told her that they were unsure why she was referred to them, telling her that she was not ‘the demographic that we would do a cystoscopy for’. This encounter ended with a diagnosis of suspected cystitis, which Likhita explained, ‘the “blank‐itis” [is] just saying there’s some pain, we don’t know why’. She added, ‘It's just been frustrating to see all these providers over the years. I still don’t really know why I'm in pain’. Still seeking answers, she independently visited a gastroenterologist (GI), who ordered a host of tests, which Likhita reflected on as a ‘whole wild goose chase of a workup’ that ultimately did not yield any useful diagnostic information. Like Likhita, others were sent for many tests by myriad specialists. Lane's experience, which opened this article, exemplifies this process, where she cycled through GI specialists for years with no symptom relief. Similarly, Rosa described how the multiple medical providers she saw ‘did a lot of tests, a lot of scans, a lot of tummy pressing, a lot of everything’, which provided little insight into her condition, at one point suggesting she see a sexual health therapist because they would ‘be more equipped to help’ her. It felt to Rosa that ‘everyone was just passing the bat’. Importantly, the process of referral to a different speciality occurs regularly and does not always develop into diagnostic buck‐passing. For instance, it is common for a person experiencing dizziness to be referred to a neurologist, a cardiologist or an otorhinolaryngologist for evaluation by their primary care provider, wherein those specialists individually take on the diagnostic project by ruling out specific conditions (Mehrotra et al.  2011 ). We contrast this with a person experiencing diagnostic buck‐passing, wherein the person seeking treatment does not have a provider who fully ‘takes on’ the diagnostic project. The person instead receives continuous referrals, wherein providers defer responsibility for diagnosis to different providers. Although a referral to a specialist does not mean that a physician is necessarily passing the diagnostic buck, per se, a provider doing so without certainty that the referral will be beneficial or merely because there is no obvious plan of care may contribute to the cycle of diagnostic buck‐passing. For instance, Carly, now 36, initially sought care at 16 due to intense pain. She recalled, ‘My doctor referred me to a gynaecologist. They performed an ultrasound, told me I was constipated, and sent me home’. Carly's experience of being referred to a new provider to undergo additional diagnostic testing, yet ultimately receiving no additional information about how to continue their diagnostic journey, was echoed numerous times in our data. Hattie Mae, who was diagnosed while trying to get pregnant, described continually receiving ‘normal’ results on screening tests, saying, ‘I've gotten so many ultrasounds, blood work…[they] usually come back normal’. Negative results from screening tests often catalyse uncertainty in the diagnostic process for both parties. Negative results communicated uncertainty to providers, who could either ‘pass the buck’ to a new provider and refer the PLE for additional testing, end the diagnostic process altogether and dismiss the PLE's presented symptoms as normal or pursue a suspected endometriosis diagnosis. For PLE, negative test results often compounded the experiences of their pain being doubted, normalised or otherwise dismissed. As Likhita put it, ‘[Providers] will do the pelvic exam and they’re like, “Oh, it looks fine to me down there”. So then it just feels like maybe it’s in my head’. In a sense, buck‐passing occurs when providers may be stumped but do not communicate this to patients. Instead, patients begin to think that the next provider will have the right tools to help them or that their concerns are not being taken seriously. Diagnostic buck‐passing thrives under conditions of highly specialised medicine and conditions marked by diagnostic uncertainty. Positive diagnoses involve the identification of a biomarker—a measurable biological characteristic—that provides evidence of a condition occurring. It requires adequate research to develop a professional consensus about the relationship between symptoms, biomarkers and conditions. Positive diagnosis can be difficult for some conditions, such as those that share a similar constellation of symptoms to other conditions. Other conditions may be under‐researched such that there are no known biomarkers or, in the case of contested illness, professionally agreed‐upon positive diagnostic criteria. Still others may be prohibitively burdensome for the person experiencing symptoms to diagnose, leaving a positive diagnosis less practically available and thus uncertain. In the case of endometriosis, all three difficulties arise. Many younger PLE are discouraged from pursuing surgical diagnosis due to the risks and invasiveness inherent to laparoscopy. Maggie, who was diagnosed with suspected endometriosis at 13, recalled that surgery was ‘waved off’ unless she was ‘actively trying to have kids’. Other providers seem to dismiss surgical diagnosis as unnecessary, like in Darla's case, who described her provider as ‘kind of cavalier about it: maybe you have endometriosis, maybe you don't, [and then] shrugs. It felt very dismissive’. Some PLE, like Violet and Harper, underwent vaginal ultrasounds that, upon showing no signs of endometriosis, were not followed up by more rigorous testing. Others, like May, who was diagnosed with suspected endometriosis at 21, felt they were refused testing due to their age. As May explained, ‘[My provider] was just like, “Oh, we don’t wanna do anything because of your age’, and she suggested continued use of over‐the‐counter pain medication.’ She continued, ‘I got outta the appointment feeling confused. I thought you guys were supposed to maybe gimme a scan or [say] maybe you should try this’. May left this encounter feeling discouraged from further pursuing a diagnosis. In each instance, confirmatory diagnosis was not communicated as a viable option to PLE during encounters with medical providers. PLE described receiving screening tests arbitrarily, despite the medical consensus that endometriosis is not always visible through ultrasound or MRI, particularly in its early stages or to an untrained eye. This lack of diagnostic information left PLE without clear next steps and often led their providers to look to other specialities to take on the diagnostic project. Without adequate information to diagnose, clinicians may face pressures to defer full responsibility for the diagnostic project to those with specialisations that manage similar symptom presentations. Clinicians evaluating PLE may perform a basic workup in which they rule out the possibility of certain conditions within their speciality. If that workup does not reveal a condition to address, then the diagnostic path forward can be unclear, which opens the possibility for the clinician to defer the responsibility of further workup required for a positive diagnosis. Without knowledge of who is best suited to address their set of symptoms, individuals seeking care may find themselves cyclically interacting with clinicians who may express unwillingness to be ultimately responsible for diagnosis and treatment. For example, many participants expressed that they encountered clinicians who downplayed their concerns. Jamie, now 42, described how her providers tended not to recognise her symptoms as warranting any further testing or treatment. She explained, ‘Even though I had had really excruciating cramps and periods, they weren’t every month, and so it was hard to know when it would happen. I would tell my doctors about it and they would be like, well, some people just have bad periods’. Or Hope, now 44, who initially sought care after having ‘very large blood clots’ roughly the size of a quarter during menstruation, in addition to experiencing intense pain during menstruation and sex. She recalled the conversation with her provider, ‘he was pretty much just like, it sounds okay to me’. This cycle is worsened when providers are unclear about the degree of their own uncertainty, leaving PLE in the dark about the various reasons for referral. Diagnostic buck‐passing is a distinct presentation of hermeneutical injustice in healthcare. In diagnostic buck‐passing, people seeking care experience difficulty understanding their own symptoms and medical experiences because there are insufficient resources to do so. Importantly, it is possible that care providers experience hermeneutical injustice themselves due to a lack of interpretive resources to diagnose the conditions of people who seek their assistance. They too may have too few resources to adequately develop a plan of care that responds to their patients' symptoms. Our focus in this article will remain on the experience of patients, as those who accrue the most harm as a result of diagnostic buck‐passing. The process of multiple referrals further complicates the interpretive picture for those seeking care. The person experiencing buck‐passing may be given overlapping explanations or narratives about their workups from different providers. Lane (opening vignette) experienced this; her providers assumed her symptoms must all be related to her scoliosis diagnosis. Conflicting narratives from different providers further deprive PLE of interpretive resources to understand their condition and medical journey. For instance, Carly felt she had been ‘misdiagnosed for 15 years’ and reported discrepant explanations from multiple specialists regarding the possibility of her having endometriosis: My general practitioner referred me to see…a gastroenterologist…And he was the first doctor who was like, ‘I think you have most likely have more than a GI problem.’ My other gastro was like, ‘Maybe talk to your gyno about it.’ My general practitioner referred me to see…a gastroenterologist…And he was the first doctor who was like, ‘I think you have most likely have more than a GI problem.’ My other gastro was like, ‘Maybe talk to your gyno about it.’ Similarly, Jackie, who had grown up with a severe orthopaedic disability and was consistently interacting with healthcare providers, went to the emergency room for intense pelvic pain and was told she was most likely constipated. She was given a laxative and a pamphlet on irritable bowel syndrome. Both Carly and Jackie were deprived of accurate information to explain what was happening in their bodies, prolonging their diagnostic journey. Further, Emma's experience is particularly characteristic of how conflicting explanations from physicians can deprive PLE of the interpretive resources for understanding their endometriosis symptoms. Emma's pain started when she got her period around 11 years old. On top of pain, heavy bleeding and bloating associated with her period, Emma's endometriosis made bowel movements extremely painful, ‘like a knife was being shoved’ into her abdomen. Emma was frequently taking the maximum allowed doses of ibuprofen and Tylenol to get through the day during her period. As a student studying biology in university, Emma researched on her own. When she saw an OB/GYN, she asked if they thought it could be endometriosis based on the symptoms she had and what she had found online. They were sceptical and told her, ‘it's really hard to diagnose’. These encounters were discouraging and reinforced for her that painful periods were normal. Emma continued seeking care and often brought up her pain with her primary care doctor, who put her on an oral contraceptive. She tried this for a while but discontinued due to side effects. Emma felt like her concerns were not being heard. She explained, ‘I even had a healthcare provider tell me that pain is mental. And she tried to tell me I was depressed, and I was like, “I'm not depressed”. And she’s like, “I think that makes your pain worse and you should be put on antidepressants”. And I was like, “But I have no history of depression. I don’t have any signs of depression, just pain. I literally just have pain”’. This lack of understanding of the individual's condition creates an asymmetry between providers and people seeking treatment. The phenomenon of buck‐passing effectively lets providers off the hook for nonstandard evaluations or creative symptom management. An environment of buck‐passing enables a lack of transparency with people seeking treatment because a provider may choose instead to merely refer or discount the symptoms altogether, rather than report their own uncertainty or limitations of their knowledge. Indeed, many participants in our study stated that they appreciated when their clinicians were forthcoming about their own uncertainty or actively listened and validated their experience despite their uncertainty. For instance, Hattie Mae expressed how grateful she was when her providers would ‘embrace uncertainty too’. Similarly, Yenny expressed appreciation for providers who enquire further about her symptoms, even when they do not have concrete recommendations. She recalled feeling surprised when her provider asked her follow‐up questions about her pain, saying, ‘I think that was the first time where I was like, wow, that’s crazy, somebody’s actually hearing me’. When an individual is systematically passed on and feels that their health concerns are not being taken seriously, they typically take on the clinical labour of managing their symptoms, indexing their medical experiences and searching for collaborative providers (Barker  2005 ; Joyce and Jeske  2019 ). Critically, even providers who refer patients to other specialities in good faith may contribute to a system where individuals who are systemically buck‐passed fall through the cracks. In some cases, PLE viewed this as a structural failure rather than an issue with their individual clinicians. For example, Hattie Mae explained, ‘I'm getting conflicting answers from doctors because I think they don’t know…and I don’t fault them for that. Nobody’s to blame for that because again, medicine can only go so far, and they can only do so much and then it’s out of their hands’. Similarly, Teresa, now 63, said she felt ‘like the whole medical system failed to help’ her. Indeed, many PLE thought that although the harms they experienced when seeking care were routed through their providers, it was the broader system that contributed to the uncertainty of their providers and, in turn, the lack of resources available to them. As a type of hermeneutical injustice, diagnostic buck‐passing unjustly harms the person experiencing it by depriving them of the tools to understand their symptoms and their medical experiences. It forces them to take on additional labour to receive adequate attention from medical providers. It may also correspond with individuals moralising their own responses in medical encounters, such as internalising responsibility for the success of clinical encounters and blaming themselves for the deference of their clinicians (Joyce et al.  2020 ; Jeske et al.  2023 ). If the reasons for diagnostic uncertainty are themselves a product of injustice, then it is likely that buck‐passing arising from that uncertainty unjustly harms the people experiencing it. As we discuss in the following section, uncertainty caused by an underprioritisation of research targeting conditions that harm marginalised populations creates conditions under which diagnostic buck‐passing can occur. Many PLE experienced diagnostic buck‐passing during their diagnostic journey. Others have noted that the diagnostic journey for people with endometriosis is often prolonged and plagued by testimonial injustices (Hsu et al.  2010 ; Griffith  2020 ; Hallström  2024 ; Langmann et al.  2025 ). Our data support what others have found with regard to testimonial injustice while shedding light on how diagnostic buck‐passing contributes to how PLE experience hermeneutical injustice. Several features of endometriosis increase the vulnerability of people with the condition to diagnostic buck‐passing. First, certain symptoms of endometriosis could be attributed to conditions of different organ systems or other conditions related to reproductive organs. For instance, back and pelvic pain may be attributed to gastrointestinal conditions such as IBS, which was a common misdiagnosis among our participants. Pain during menstruation or ovulation may be attributed to other conditions related to the female reproductive system or normalised altogether. For instance, Mabel, who was waiting to undergo a hysterectomy at the time of her interview after years of complications, described experiencing scepticism from her providers when she would describe her pain. She recalled numerous providers telling her, ‘Oh, it’s not that bad. Your pain isn’t that bad’, or feeling as if her providers were asking, ‘Are you really feeling that?’ Experiences of PLE having their endometriosis‐related pain normalised, dismissed or diminished were widespread throughout our sample, across various dimensions of our participants' positionalities, and led PLE to experience anxiety and apprehensiveness when seeking care. Kiera described the intense anxiety she experienced because of these experiences of dismissal, saying: I'm automatically sitting there with my guards up because I'm nervous of how they might react to me, how they might jump to conclusions, how they may not believe me or take me seriously at all. I'm automatically sitting there with my guards up because I'm nervous of how they might react to me, how they might jump to conclusions, how they may not believe me or take me seriously at all. In some cases, it was PLE's own beliefs about their pain—that is, that it was normal—that kept them from seeking care earlier. Hannah put it simply when she said, ‘I think that a lot of people believe that [being in pain is] almost part of being a woman’. Chronic pain may be attributed to conditions such as fibromyalgia or mental health conditions such as anxiety and depression, as with Emma's story above. Like Emma, multiple participants were treated as though they had psychosomatic conditions. For example, Rosa recalled being told by multiple specialists that ‘the pain can't be that bad. It's all in your head…maybe you just have anxiety and you're overthinking it’. Other PLE have their pain attributed to other factors, such as age or body size. For instance, Yenny recalled, ‘My PCP was like, “oh, it’s normal to have hard periods. Maybe you want to work out more and you might lose weight and then that way you can have less bleeding”’. This opens the possibility for clinicians to pass diagnostic responsibility to a specialist who manages those other conditions, as well as onto patients to make lifestyle changes (see Figure  2 ). Crucially, there has been poor recognition of endometriosis symptoms by providers, leading to the dismissal of symptom reports, potentially inappropriate referrals and misdiagnoses. Diagnostic buck‐passing in endometriosis diagnosis. Second, noninvasive screening tests are not yet routinely available for endometriosis. Definitive diagnosis of endometriosis is typically accomplished through laparoscopic surgery (ACOG  2010 ), which, although minimally invasive, is still a surgery that comes with risks. Additionally, not all PLE are ‘good’ surgical candidates. Many people are discouraged from pursuing surgery unless they deem their pain symptoms bad enough to justify it or are having fertility difficulties, as discussed above. 1 The result is that, though there is a mechanism to definitively diagnose (and remove) endometriosis, it is oftentimes more accessible to diagnose by excluding other possible conditions and to treat people with a diagnosis of suspected endometriosis without surgical confirmation. Because frontline treatment for endometriosis is typically an oral contraceptive pill (OCP), often providers encourage PLE to try OCPs for symptom management before pursuing surgical options. Thus, many who go through this process of exclusion do not ultimately have endometriosis surgery and never receive an official diagnosis, instead remaining with the diagnostic label of ‘suspected’ endometriosis. Although this may mean that their symptoms are being treated, participants in our study spoke at length about the negative consequences of remaining in diagnostic limbo, often having to recount their symptoms and justify their working diagnosis when seeing new providers. Blueberry describes this in the following excerpt: When I'm at different doctors' offices and I get the question of ‘do you have any conditions?’ I do the, ‘yeah, I'm endometriotic’ and they'll be like, ‘well have you had surgery to confirm that?’ I’ll be like, ‘no.’ And then I get a lot of, ‘well then how do you know?’ And I don't always know how to answer that question because a lot of the times, providers I've gone to, especially when I was younger, didn't talk me through their diagnostic process. So I dunno how to say, multiple people have told me this….That seems to be the only reason that providers told me, I don't think you do have endometriosis 'cause you don't know with certainty. When I'm at different doctors' offices and I get the question of ‘do you have any conditions?’ I do the, ‘yeah, I'm endometriotic’ and they'll be like, ‘well have you had surgery to confirm that?’ I’ll be like, ‘no.’ And then I get a lot of, ‘well then how do you know?’ And I don't always know how to answer that question because a lot of the times, providers I've gone to, especially when I was younger, didn't talk me through their diagnostic process. So I dunno how to say, multiple people have told me this….That seems to be the only reason that providers told me, I don't think you do have endometriosis 'cause you don't know with certainty. Blueberry highlights how a lack of surgical diagnosis can lead to disbelief of the suspected diagnosis by subsequent providers. In addition to experiences of dismissal or invalidation, PLE also discussed how diagnostic limbo can lead to worsening symptoms. As Kiera described, ‘I feel like if I had been taken seriously and believed in the first place, it wouldn’t have gotten to this extent…if that one doctor had just listened to me instead of telling me it was all in my head, then I wouldn’t have been as severe’. Kiera suspected that the prolonging of diagnosis and subsequent lack of treatment led to the worsening of her endo symptoms. She added, ‘Endometriosis is like a forest fire or a wildfire. You put out the fire, but the damage is done’. Third, systematic underinvestment in medical research and professional education related to endometriosis has contributed to a dearth of information for providers about diagnosing and treating endometriosis. This underinvestment is itself based in unjust structural forces that disincentivise research on reproductive conditions (Hudson  2022 ; Seear  2014 ). Historically, biomedical research in obstetrics and gynaecology has prioritised fertility‐related topics rather than conditions of the reproductive system, such as endometriosis (Almeling  2020 ). This underinvestment, combined with stigmatised social norms around menstruation and reproductive health, translates to clinical encounters with poor identification and management of endometriosis and related symptoms, particularly in general examinations with a primary care physician. These features of endometriosis and the social circumstances under which PLE seek care contribute to the frequency with which they experience diagnostic buck‐passing. PLE repeatedly have their symptoms dismissed or normalised, as providers misunderstand the relevance of their symptoms to their own practice. They are referred to specialists who are ultimately unable to assist them and seek out urgent medical care for relief when their untreated symptoms become unmanageable. The result is that people seeking care get evaluated for a slew of alternative conditions prior to any provider seriously considering a diagnosis of endometriosis. In other words, providers are willing to consider anything but endo .

When asked about the first words that come to mind when thinking about endometriosis, alongside ‘pain’, participants in this study frequently said ‘frustration’, ‘confusion’, ‘not being believed’ and ‘misdiagnosis’. Per their stories, the most profound parts of living with endometriosis are the pain they experience and the challenging, prolonged diagnostic journey. Our data and analysis underscore how epistemic injustice—both testimonial and hermeneutical—manifests in the diagnostic journeys of PLE. We consistently observed PLE reporting that providers downplayed the possibility of endometriosis as the cause of their symptoms, opting instead to focus on other reproductive conditions (pregnancy, STDs), benign uterine conditions (fibroids), low pain tolerance, weight gain, chronic somatic pain in the pelvic region (back pain, gastrointestinal pain) or mental health conditions (depression, anxiety). By treating endometriosis as a diagnosis of exclusion, because its definitive diagnosis is invasive and risky and, perhaps, because management of endometriosis seems more challenging than other conditions, endometriosis often ends up being one of the last conditions seriously considered by providers. This effectively leaves those with endometriosis managing a variety of misdiagnoses—or in diagnostic limbo altogether—potentially for years. It is not merely that people with endometriosis are encouraged to explore whether they have various other conditions but that they are often explicitly discouraged from pursuing a surgical diagnosis of endometriosis in favour of a different condition for which there is no additional evidence that they have but for which there are noninvasive ways to diagnose. In effect, as providers initially attribute symptoms to conditions other than endometriosis, they effectively engage in a diagnostic buck‐passing to other specialists to evaluate for other conditions. In addition, diagnostic buck‐passing often leads people to doubt their lived experiences of symptoms. Many of our participants explained how their diagnostic journeys led them to think that their symptoms were all in their heads, that they were more sensitive to pain than others perceived or that they were weak. Hence, when they did undergo surgery that confirmed their endometriosis diagnosis, they often felt relief and validation knowing that they indeed had the disease. As discussed previously, surgical diagnosis comes with risks, and many clinicians do not think that everyone who has suspected endometriosis should pursue surgery only to confirm diagnosis. Current guidelines recommend a trial of hormonal therapy (e.g., OCPs) to suppress ovulation and menstruation in people presenting with symptoms that could be caused by endometriosis regardless of positive diagnosis (ACOG  2010 ; Allaire et al.  2023 ). However, such a rationale for not pursuing diagnosis was often not communicated with PLE in this study, and so the ‘suspected endometriosis’ diagnosis seemingly kept them in diagnostic limbo. This can furthermore lead to challenging interactions with other healthcare providers—who are often unfamiliar with the intricacies of endometriosis—who may question the veracity of their suspected diagnosis. Moreover, treating endometriosis based on clinical diagnosis requires awareness of endometriosis and its symptoms, as well as the recognition of the abnormality of menstrual pain. As we have seen through the experiences of PLE, medical providers consistently fail to seriously consider endometriosis without first ruling out all other possible aetiologies that could explain their patients' symptoms. Although it is possible that the practice of referrals to other specialities could be consistent with clinical practice guidelines for endometriosis, it is questionable as to whether the extent of diagnostic buck‐passing observed in endometriosis diagnosis is what is intended. What we do know, through interviews with PLE conducted in this study, is that diagnostic buck‐passing leads to diagnostic delays and that it is often physically, financially and emotionally costly for PLE. Jeske et al. ( 2023 ) have shown that the diagnostic journey deeply shapes how people experience illness. In the case of endometriosis, the diagnostic buck‐passing that many PLE experience profoundly shapes their future health‐seeking behaviours, how they approach healthcare encounters and how trustworthy they consider their current and future healthcare institutions and clinicians to be. Simply put, diagnostic buck‐passing is not only harmful in that it prolongs diagnostic journeys but also because it often negatively impact people's relationships with healthcare more generally. What remains is the question of why providers are consistently more likely to pursue these other diagnoses and make referrals to other specialities than they are to seriously consider the possibility of endometriosis from the outset, a question that should be pursued in future research. Indeed, epistemic humility was something that PLE wished they experienced more of—resonating with findings that have shown patients find value when providers communicate their own uncertainty (Kalinowski et al.  2024 ; Schwab  2012 ; Kelly and Panush  2017 ). We have argued that diagnostic buck‐passing partially explains the prolonged diagnostic journeys PLE experience. In outlining this dimension of the endometriosis diagnostic journey, we advance the conceptual discussion surrounding diagnostic trajectories and illness experience of endometriosis and urge researchers, funders and medical providers to prioritise this area of research to help realise a more just healthcare future for people living with endometriosis. The concept of epistemic injustice, and hermeneutical injustice in particular, is useful in analysing the experiences of PLE because their experiences speak to the larger structural shortcomings in biomedical research and healthcare. Diagnostic buck‐passing, as a social process, emerges in and through a particular sociohistorical milieu and healthcare context that consistently downplays women's self‐reported health and experiences of pain, one that has rendered conditions such as endometriosis to be less important research priorities, resulting in undone science that negatively impacts people living with endometriosis every day.

At 20 years old, Lane started regularly going to see an obstetrician‐gynaecologist (OB/GYN). The clinician was also her mother's care provider, and he had diagnosed her mother with endometriosis years earlier. Lane had started to experience pelvic discomfort in her late teens; when she explained her symptoms at her first OB/GYN appointment, she expressed that she thought she may have endometriosis like her mum. Lane was surprised when her doctor responded that he did not think she had endometriosis because her symptoms did not line up, but she trusted him. Over the next 4 years, she saw various providers for back pain and received a diagnosis of scoliosis, to which various providers attributed many of her symptoms. Her pain continued. After years of continued unexplained pelvic pain and painful periods, Lane appealed again to her OB/GYN about the possibility of endometriosis. This time, he referred her to a gastroenterologist. The gastroenterologist told her that she may have irritable bowel syndrome (IBS), a catch‐all diagnosis for gastrointestinal symptoms of unknown aetiology. Alongside these encounters with specialists, Lane had been to the emergency department on several occasions for her pain and was frequently told ‘you're fine’ by doctors and nurses. Lane internalised these exchanges, doubting her pain and feeling that maybe she had made it all up. At 30, Lane moved to a new city. Her pain continued. She began vomiting regularly and missing work around her period each month. She sought out a new doctor, searching for a specialist with expertise in endometriosis and other reproductive conditions. When she shared her care experiences and symptoms with her new provider, the provider stopped her after a few minutes and said, ‘I'm sorry you've been gaslit for 10 years. It sounds like you have endometriosis, and we should do surgery to confirm and remove it’. Lane burst into tears, overwhelmed with relief and anger. Her surgery confirmed that she had endometriosis, and the surgeon was able to remove several lesions. For Lane, the diagnosis was as much about symptom relief as it was about validation—validation that she knew her body and that her pain was not all in her head. Endometriosis is a disease that affects roughly 10% (190 million) of people born with female reproductive organs globally (NICHD  2020 ). It is characterised by tissue similar to the lining of the uterus growing elsewhere in the body, most commonly within the pelvic cavity (e.g., ovaries, fallopian tubes, tissue surrounding the uterus, bowels or bladder). For many, these growths cause generalised pain, often resulting in a significant negative impact on health and quality of life (Nnoaham et al.  2011 ; NICHD  2020 ; Missmer et al.  2021 ). People with endometriosis experience diverse symptoms, including heavy periods, back pain and nausea, as well as acute pain during menstruation, ovulation, bowel movements and penetrative sex. Approximately one third of people who undergo surgery for chronic pelvic pain and almost half (47%) of females with infertility are found to have endometriosis (Meuleman et al.  2009 ; Stratton and Berkley  2011 ; WHO  2023 ). Despite being one of the most common gynaecological conditions, little is known about potential risk factors for endometriosis, its aetiology or why it has such diverse presentation and impact. The diagnostic journey for people living with endometriosis (PLE) is often prolonged, marked by a process of exclusion, whereby doctors rule out other potential causes of symptoms before making a definitive diagnosis for endometriosis (Hsu et al.  2010 ; Griffith  2020 ). Because some endometriosis symptoms overlap with other diseases, such as IBS, interstitial cystitis, autoimmune disorders or vascular, musculoskeletal, neurologic and psychological diseases (Nezhat et al.  2019 ), the process of ruling out all other potential causes can take an extended period of time. Indeed, one international study showed the average time it took to receive a surgical diagnosis from the onset of symptoms was 6.7 years for people between the ages of 18 and 45 years (Nnoaham et al.  2011 ). This means that PLE spend almost 7 years on average in diagnostic limbo, being passed from specialist to specialist to rule out all other potential disease pathways before finally receiving their diagnosis. As a result, many PLE spend years in pain without a clear explanation or effective treatment. Unlike diagnoses of exclusion (e.g., fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome), it is possible to definitively diagnose endometriosis through laparoscopic surgery that confirms the presence of endometriotic lesions (ACOG  2010 ). However, the process of exclusion approach is backed by clinical guidelines in the United States, which recommend ‘a thorough evaluation to exclude other causes of pelvic pain’ before initiating ‘aggressive therapy’ for endometriosis (ASRM  2014 ), such as laparoscopy (Hirsch et al.  2018 ). In this article, we draw on our analysis of 52 in‐depth interviews with PLE in the United States (US) to introduce the concept of ‘diagnostic buck‐passing’ that helps explain this prolonged diagnostic journey. Diagnostic buck‐passing is a concept we develop to describe a phenomenon in healthcare when individuals who seek treatment for their symptoms end up in a cycle of seeing different providers across ranging specialities, prolonging diagnosis. Importantly, diagnostic buck‐passing is a phenomenon observed within the context of the highly specialised and hierarchical healthcare system in the United States. Within this system, it is often considered best practice to refer patients to specialists when clinicians experience uncertainty in diagnosing a complex constellation of symptoms. In the case of endometriosis, diagnostic buck‐passing amounts to people being treated as though their symptoms are ‘anything but endo’, as one participant put it, as they are passed from speciality to speciality while attempting to seek answers for their symptoms. Lane's story of delayed diagnosis, challenging clinical encounters and internalised self‐doubt is not unique; rather, it is emblematic of the PLE diagnostic experience. Diagnostic buck‐passing not only leads to harmful delays in diagnosis and treatment, but it is also a product of hermeneutical injustice. Joining those who have suggested that endometriosis is marked by undone science (Hudson  2022 ), we contend that the uncertainty that facilitates diagnostic buck‐passing is a result of systematic wilful ignorance present in biomedical research and clinical care for endometriosis that stems from consistent underinvestment in women's health generally (Hudson  2022 ). To begin, we briefly review literature on epistemic injustice and undone science and how they have been leveraged in medical sociology and science and technology studies literatures in recent years. We then introduce the concept of diagnostic buck‐passing, grounding it in our data, and describe the conditions under which it occurs. Finally, we characterise how diagnostic buck‐passing occurs in PLE's diagnostic journeys and consider its consequences. Epistemic injustice describes a specific kind of wrong that can occur to people in virtue of their ‘capacity as a knower’ (Fricker  2007 ). These wrongs constitute epistemic injustices, of which there are two types. The first, testimonial injustice, occurs when someone is given less credibility than they deserve for unfair reasons, such as prejudicial stereotyping. Although the victim of this injustice may ultimately be believed, they are taken less seriously as a result of the biases of those who are evaluating their claims and experiences. Hermeneutical injustice, the second type, occurs when one's ability to make sense of a social experience is unfairly difficult because of a lack of interpretive resources available to them. For instance, Fricker ( 2007 ) discusses how victims of sexual harassment often had difficulties understanding their own experiences prior to the activist movement defining the concept of ‘sexual harassment’. Without epistemic resources, victims of sexual harassment were left without the tools to internally process their experiences and communicate the wrongs done to them. Fricker argues that wrongs that stem from a lack of sufficient conceptual resources to make sense of one's experiences constitute hermeneutical injustices. Importantly, no singular person performs an act of hermeneutical injustice; instead, hermeneutical injustice results from a structural gap in knowledge, the scaffolding required to understand and make meaning of a person's experience. It is this second type of epistemic injustice that is our focus in this article. In recent years, medical sociologists have utilised an epistemic injustice framework to analyse individuals' experiences of disability (Mladenov and Dimitrova  2023 ), mental health (Yates et al.  2024 ) and transgender identity (Llaveria Caselles  2021 ), as well as those directly affected by others' illnesses, such as caregivers (Isham et al.  2020 ). Mladenov and Dimitrova ( 2023 , 1148) refer to epistemic injustice as a ‘toolkit’ to better understand how lived experiences of people with various illnesses ‘are mediated by hierarchies of epistemic power that characterise their exchanges with professionals’. A robust, interdisciplinary literature on epistemic injustice in healthcare has emerged (see, for instance, Carel and Kidd  2014 ; Kidd and Carel  2017 ; Freeman  2015 ; Blease et al.  2017 ; Peled  2018 ). Literature on epistemic injustice and endometriosis specifically has largely focused on testimonial injustice. Hallström ( 2024 ) analyses what she terms the endometriosis episteme and the epistemic practices related to the diagnostic journey of PLE, including the ways in which agency and identity are undermined when people's testimonies about their experiences with endometriosis are not appropriately recognised. Langmann et al. ( 2025 , 154) explore the testimonial and hermeneutical injustices present at different points in PLE's lives, showing how they face testimonial injustices in contexts, where their symptoms are questioned or disbelieved. This experience is exacerbated in healthcare by providers' lack of knowledge of endometriosis and worsened by prejudicial biases against women, older people and people of colour (Cruikshank  2013 ; Langmann et al.  2025 ). Because hermeneutical injustices are structural in nature, it can be complex to pinpoint their presence and impact. This is in part because, although the injustice itself impacts individuals, the reasons that explain a lack of epistemic resources are systemic and multifactorial and deal with the intersection of clinical care and biomedical knowledge production. Here, we turn to literature exploring the politics of knowledge production that lays the foundation for understanding what has been termed ‘nonknowledge’ or ‘undone science’ (Frickel et al.  2010 ). Sociologists of science and medicine have analysed the institutional politics of knowledge production, including the absence of knowledge production or ‘undone science’ (Hess  2007 ; Frickel et al.  2010 ; Kempner et al.  2011 ). Undone science generally describes areas of research that have been unfunded, understudied and incomplete or otherwise ignored by established scientific institutions but that others (e.g., social movements, organisations, patient advocates) have deemed worthy of further research (Frickel et al.  2010 ). The systematic nonproduction of knowledge is structural and situated within the ‘institutional matrix of governments, industries, and social movements’ (Frickel et al.  2010 , 446). Hudson ( 2022 ) argues that endometriosis presents a case of undone science, contending that systematic underinvestment in scientific research on certain conditions is directly linked to the absence of knowledge. Further, this is not incidental but instead results from wilful ignorance (Tuana  2006 ), whereby the scientific community remains ignorant about the disease (aetiology, risk factors, treatment modalities etc.) despite potentially having the capacity to know more about endometriosis. In other words, it is not that it is impossible to learn more about endometriosis, but rather that it has not been considered a priority to fund and research. Like hermeneutical injustice, undone science emerges through a variety of structural forces that shape research priorities. Biomedical knowledge on endometriosis has been couched in stigma far before its first consideration as a disease in the early 20th century (Acién and Velasco  2013 ; Guidone  2020 ). Long regarded as enigmatic—a framing of which Seear ( 2014 ) has pointed out we should be critical—medicine has systematically dismissed PLE's experiences of pain or reduced them to ‘hysterical’ experiences (Whelan  2003 ), calling back to early ideas of ‘migrating wombs’ (Denny  2004 , 2009 ; Guidone  2020 ). Even into the 21st century, many clinicians argued against its categorisation as a disease, believing that mild cases should not be treated, and a few went so far as to contend that all people with uteruses have endometriosis, as endometrial reflux occurs regularly during menstruation (Denny  2004 ). The landscape of stigma and the normalisation of pain that shroud endometriosis, which Young et al. ( 2019 , 1) describe as ‘a metaphorical meeting point for gender, knowledge and power’, sets a standard for deprioritising knowledge production on endometriosis in biomedical research spaces. Because the aetiology of endometriosis remains contested (Culley et al.  2013 ), the claim over endometriosis by medical specialities has remained up for grabs, though it has generally been regarded as within the purview of OB/GYN specialists. Thus, endometriosis exists both in between and across different areas of expertise: Is it a gynaecological condition, endocrine, immune, something else or all of the above? This confusion not only leads to a lack of centralised knowledge production but also contributes to the long periods of diagnostic delay typically reported by PLE (Culley et al.  2013 ; Ford  2024 ). Recently, recognition of endometriosis's contested framing in biomedicine (Ford  2024 ) hints at a move away from understanding endometriosis as a disease isolated to a specific clinical area (i.e., endocrine, gynaecological or neural) to a ‘systemic disease’, implicating the whole body. Notably, the categorisation of endometriosis as a systemic disease introduces one's environment into the mix, acknowledging the potential for endometriosis to be connected to environmental pollutants, stress or adverse childhood experiences (Ford  2024 ). However, this introduction of multiple factors in understanding endometriosis does not necessarily ensure progress towards better medical care. Rather, as Ford ( 2025 ) suggests, this possible reclassification as an environmentally linked condition can result in ‘slippery knowledge’, which evades action because it is simply too expansive, thus resulting in further deferral of responsibility. Taken together, this scholarship lays a foundation for why people experiencing endometriosis find themselves in a peculiar bind when seeking care for their symptoms. Without better biomedical and clinical knowledge about endometriosis, providers are seemingly unable to guide their patients towards diagnostic certainties. In what follows, we argue that there is a distinct epistemic phenomenon, diagnostic buck‐passing, that occurs as a manifestation of hermeneutical injustice that prolongs the diagnostic journey for PLE.

The authors declare no conflicts of interest.