Believing women: a qualitative exploration of provider disbelief and pain dismissal among women with interstitial cystitis/bladder pain syndrome from the MAPP research network.

Fifty-seven female patients between the ages of 19 and 77 years (median = 41) participated in the study and were evenly divided across the eight focus groups (average of 7/group). The majority of participants self-identified as white (91.2%) and reported having at least one chronic overlapping pain condition (73.7%) including irritable bowel syndrome (45.6%) and fibromyalgia (24.6%), as well as anxiety (40.4%) and depression (33.3%). Women reported having experienced IC/BPS symptoms for 1–45 years (median = 8) and moderate pelvic pain and urinary symptom intensity in the prior 2 weeks (mean = 4 and 4.5 respectively, on a scale of 1–10). Five themes illustrating a range of participants’ perceptions were identified from the focus groups: Dismissing women’s pain: Near the end of the session, participants were asked to describe one of the most bothersome aspects of living with chronic pain. At this prompting, many women reflected on their struggle to make others understand their condition as “real,” and therefore valid. Although participants cited a host of negative fallout from skeptical friends to suspicious employers, nearly all agreed that there was something particularly demoralizing about having their condition dismissed by providers (described below in a–c), often culminating in women questioning their own ability to perceive pain. Invisible pain (“You look fine”): Several participants explained that one of the most difficult aspects of IC/BPS was its invisibility. In particular, women believed that their outward “normal” appearance and lack of external, physically apparent symptoms (e.g., broken bones) contributed to provider dismissal, with some even expressing a desire to have more external symptoms just to be believed. Exaggerated pain (the “Type A” woman): Another form of pain dismissal occurred when providers insinuated that participants’ symptoms were rooted in their subjectivity, namely being of an anxious cognitive disposition, broadly attributed to their gender. Participants were regularly told that stress from their “high-strung” personality or being “wound too tight” was the main culprit behind their symptoms. One participant in particular was advised to simply try adopting a more positive outlook. For others, pain dismissal appeared as oversimplification, such as being told that is “just the way your plumbing works” or “just train your pee.” One woman who expressed that intercourse was a major trigger for her symptoms was told by a gynecologist to “relax more, just get more into it.” Indeed, several participants linked pain dismissal to simply being a woman, collapsing IC/BPS under an umbrella of “hysterical women’s diseases.” Two other women felt embarrassed about being the sole female patient in a urology clinic: “The urologist, if you don’t have a penis, they don’t really want to (cross talk/laughter…seriously! I was the only woman in the waiting room…with the urologist and I go in there and it was just like, ‘Here, try this.’ There was no serious treatment interest.” Psychosomatic pain (“It’s all in your head”): Long-term dismissal from multiple providers often led participants to dismiss their own pain, frequently entertaining the idea that their pain may be of psychosomatic, self-induced, or even hallucinatory origin. Women who had suffered considerable diagnostic delay were especially adamant about being made to feel this way. The implications of providers’ pain dismissal as non-existent or self-induced directly affected patients’ sense of self, contributing to feelings of social isolation: “I went to the doctor for 25 years before I was diagnosed with anything, and I think it’s really screwed with me…I feel like I don’t want to tell anybody because I’m going to be told there’s nothing wrong with me. And I feel like I’m screwed up. That’s when I feel alone.” Invisible pain (“You look fine”): Several participants explained that one of the most difficult aspects of IC/BPS was its invisibility. In particular, women believed that their outward “normal” appearance and lack of external, physically apparent symptoms (e.g., broken bones) contributed to provider dismissal, with some even expressing a desire to have more external symptoms just to be believed. Exaggerated pain (the “Type A” woman): Another form of pain dismissal occurred when providers insinuated that participants’ symptoms were rooted in their subjectivity, namely being of an anxious cognitive disposition, broadly attributed to their gender. Participants were regularly told that stress from their “high-strung” personality or being “wound too tight” was the main culprit behind their symptoms. One participant in particular was advised to simply try adopting a more positive outlook. For others, pain dismissal appeared as oversimplification, such as being told that is “just the way your plumbing works” or “just train your pee.” One woman who expressed that intercourse was a major trigger for her symptoms was told by a gynecologist to “relax more, just get more into it.” Indeed, several participants linked pain dismissal to simply being a woman, collapsing IC/BPS under an umbrella of “hysterical women’s diseases.” Two other women felt embarrassed about being the sole female patient in a urology clinic: “The urologist, if you don’t have a penis, they don’t really want to (cross talk/laughter…seriously! I was the only woman in the waiting room…with the urologist and I go in there and it was just like, ‘Here, try this.’ There was no serious treatment interest.” Psychosomatic pain (“It’s all in your head”): Long-term dismissal from multiple providers often led participants to dismiss their own pain, frequently entertaining the idea that their pain may be of psychosomatic, self-induced, or even hallucinatory origin. Women who had suffered considerable diagnostic delay were especially adamant about being made to feel this way. The implications of providers’ pain dismissal as non-existent or self-induced directly affected patients’ sense of self, contributing to feelings of social isolation: “I went to the doctor for 25 years before I was diagnosed with anything, and I think it’s really screwed with me…I feel like I don’t want to tell anybody because I’m going to be told there’s nothing wrong with me. And I feel like I’m screwed up. That’s when I feel alone.” Refusing to listen (and believe) women’s pain stories and its effect on the clinical encounter: Participants expressed feelings of frustration that they were not adequately listened to by their providers. They also expressed exasperation at having to confront the same diagnostic procedures over-and-over again with multiple new providers, only to ultimately be re-prescribed the same familiar handful of medications for overactive bladder and urinary tract infections (UTIs). As participants rotated through numerous specialists, they became notably vexed by what one referred to as “the trial,” a flurry of referrals, rote antibiotics, screenings, and procedures that time and again came back with the same negative result. Antibiotic prescriptions were met with particular disdain, viewed as a mechanistic response for merely mentioning urinary symptoms, and further confirming negative perceptions of provider dismissal. When asked what clinicians most needed to focus on, participants expressly listed listening as a top priority for providing “better bedside manners.” “Obviously, listening more,” one participant explained, “I have met some doctors that…come flying in the door, ‘So what’s going on?’ You’re like, ‘Hi, nice to meet you.’ I don’t know, just rough.” After multiple physician–patient encounters of this sort, participants developed hardened strategies to make it through appointments, such as crying or “testing” physicians for their willingness to listen: “I’ve been, like, hysterically crying in offices… listen to what I am saying, you know…I almost go into doctors’ offices now, like, you talk…and then if you let me talk, that’s fine.” Skeptical nurses and office staff were also cited as potential obstacles, as visits to new clinics entailed having to repeatedly re-tell their pain stories to different people: “a lot of times it’s just fighting through the staff to get to the doctor.” Taking matters into their own hands (self-education and shared-decision making): When discussing why they thought their providers did not believe them, participants pointed to their highly individualized symptoms, triggers, and management strategies: “Everybody is so different, so they can’t really…they don’t really know how to diagnose it.” Participants insisted that many physicians they encountered, including urologists, appeared to be unfamiliar with IC/BPS and did not know how to treat it. In response to this perceived lack of awareness, participants viewed themselves as an experimental generation of “trial and error,” forced to take matters into their own hands by doing research for themselves: “I feel like this just needs to be like taught more in medical school.” Participants who did their own research bitterly described situations in which they were made to feel powerless in clinical encounters, arguing that because IC/BPS affected their bodies in highly individualized ways, they wanted to play a more active role in determining their treatment. Moralizing chronic pain: The physician responses discussed above (e.g., pain dismissal, lack of listening) directly shaped how women interpreted and attached meaning to their condition. Throughout these conversations women batted around the notion of blame, asking other participants if they ever felt like they were responsible for their symptoms. Most women reluctantly confirmed this, describing such instances as a choice to indulge despite the consequences: “I think sometimes we do, just so we can feel like we are leading a normal life…you go out with a group of people, and you want to do what they are doing…eat what they are eating, drink what they’re drinking.” In the absence of clinical guidance, women felt obliged to self-manage their condition, adopting an ascetic lifestyle with severe restrictions in diet and daily activities. This in turn led to self-blame when symptoms occurred, understood as the price for engaging in “normal” behavior. Nearly all participants said that they had at one point or another relied on pain medication, sharing anecdotes on how they believed this affected the physician–patient relationship. One woman warned others to not “word it as ‘pain’…they’re automatically going to think, ‘we can’t cure that.’” Age also influenced how younger participants broached this topic with providers, expressing fears of being labeled as “drug-seeking.” One participant was told that she was “too young to have IC” after asking for pain medication, then scolded for being “too young to be doing this,” a response that she interpreted to imply malingering. Many of the narratives around pain management were laden with moral ambiguity, such as fears over the type of person that their physician perceived them to be, which in turn determined their worthiness as a patient. Participants’ anxieties with how their providers perceived their request for pain medication likewise had a reverberating effect on their psychosocial states, as participants shared how the stigma associated with opioids exacerbated their sense of shame, anger, and depression. Finding a “believer”: Although nearly all participants shared experiences of provider disbelief and dismissal, some clarified that these negative encounters occurred prior to receiving an accurate diagnosis. For these women, the seemingly endless constellation of referrals, diagnostic screenings, and false diagnoses came to an end after finding a physician who “believed” in the physical origin of their pain. One woman described immense relief from hearing her physician mention that IC/BPS is common. Another participant divided urologists into two camps, suggesting that “outside urologists” (e.g., nonspecialists) should learn to recognize the signs of IC/BPS and refer patients to “urologists that are believers .” Whereas many women described an improvement in their relationship with their provider after receiving an accurate diagnosis, others appeared to have lost faith in biomedicine after years of negative clinical encounters, finding more relief from complementary and alternative medicine (CAM).

The MAPP multi-site focus group study was originally designed to better understand urological chronic pelvic pain flare experiences [ 8 ]. It included eight focus groups of female IC/BPS patients recruited from four geographically disparate university research centers from April to June 2012. Each participant provided informed consent and each participating site provided Institutional Review Board approval. Focus groups were led by a female moderator and adhered to a semi-structured interview guide that probed topics including typical symptoms and variation; flare predictability, prevention, and alleviation; day-to-day and long-term impact of flares; and time for open-ended discussion. Focus groups lasted ~1.5 h and were recorded and transcribed verbatim by a professional service. All transcripts were reviewed for accuracy, de-identified, and stored as encrypted files. After reviewing the secondary IC/BPS literature on physician–patient relationships, we drafted a preliminary codebook flagging all descriptions of physician–patient interactions. Using this basic codebook, a primary rater (VLB) coded the first focus group, working inductively to identify (“code”) analytical categories as they emerged. Coding is a form of textual content analysis in which raw data are continually read and re-read to identify patterned relationships with the ultimate goal of generating theoretical explanations [ 14 ]. After completing the first focus group, the rater updated the codebook and then proceeded to code each of the following transcripts in the same manner. This iterative process of codebook refinement allowed us to systematically capture the subtle nuances of patients’ perceptions. After completing the final codebook, the rater re-reviewed the transcripts to ensure that all codes were applied evenly. Using constant comparison methodology, the rater gradually refined and grouped these codes into key themes. All transcripts were uploaded into Atlas-ti for data analysis.

Our findings confirmed our hypothesis that women with IC/BPS share common experiences of provider disbelief and pain dismissal, usually before receiving an accurate diagnosis. Participant discussions demonstrated the extent to which these encounters negatively influenced their health-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, disbelief and pain dismissal occurred as implicit insinuations, explicit statements, and other forms of nonverbal communication (e.g., silence; lack of empathy). Over time, these negative interactions shaped the way in which women approached clinical encounters, responding with a number of different strategies such as rotating through different specialists in search of effective treatment; “testing” physicians for their willingness to listen; learning to self-advocate and self-manage; doing their own research; avoiding labels of “drug-seeking”; crying during office visits; and preferring CAM providers over physicians. Women across all focus groups agreed that a lack of quality communication with their providers (e.g., empathy; IC/BPS education) was a primary concern. For many women, the focus group was their first time meeting with other women with IC/BPS, and they frequently interrupted the moderator to interject, advise, ask their own questions, and express solidarity with one another. Participants remarked that hearing from other women with similar experiences made them feel less alone, expressing a sense of hope that, finally, this condition was being taken seriously by the medical field. Tellingly, when asked what aspects of chronic pelvic pain that they thought researchers should focus on, participants raised the problem of provider disbelief unprompted, exchanging exasperated stories of rejection, anger, embarrassment, and loneliness. Congruent with other findings among chronic pain patient communities [ 15 ], recounting negative clinical encounters appeared to draw participants closer, as women formed bonds of solidarity through the lived experience of provider rejection. Conversations likewise afforded participants a space to voice their discontent with what they perceived to be inadequate awareness of IC/BPS among clinicians and to reject insinuations of malingering. Because IC/BPS is a syndrome of complex, highly individualized symptoms and associated comorbid conditions, rather than a disease with an understood pathology, a composite “clinical picture” of IC/BPS is not possible [ 16 ]. Patients with IC/BPS often wait years—sometimes decades—before receiving an accurate diagnosis; therefore, by the time they arrive at a diagnosing physician’s doorstep, they often bring with them extensive experience with medical and nonclinical interventions. Throughout the focus groups, women detailed how the considerable time spent learning how to predict, manage, and relieve their symptoms on their own allowed them to cultivate a heightened degree of body awareness through years of trial and error. This highly personalized choreography of self-management involving dietary and clothing restrictions; alterations in work, travel, and lifestyle; limitations on sexual intimacy and physical activity; and biomedical and CAM procedures shows the degree to which the IC/BPS body rejects standardization. Thus, we propose that a patient-centered approach that invites patients to include their personal experiences, beliefs, and embodied knowledge into their treatment can elevate the clinical interaction beyond typical urology considerations, affording patients the ability to share in decision-making, a salient point where no clear “best” treatment option exists. Throughout the discussions, participants’ perspectives on physician–patient interactions revealed a concern with how “real” their pain was seen to be. Previous phenomenological research on similarly ill-defined, hard-to-diagnose conditions has shown how diminished capacity to carry out social roles in the family and workplace can drastically alter an individual’s outlook on their life’s purpose and future [ 17 ]. Experienced as a loss of self, the “ontological assault” of chronic illness frequently produces a before–after affect to a person’s worldview as they contrast prior aspirations to a life forever altered by chronic pain [ 18 ]. By insisting that providers validate their pain as real, participants sought to link their condition to an organic pathology located within the body (not mind), thereby evading deeply held Western cultural notions about the causality and legitimacy of illness—namely, the attribution of individual responsibility for illnesses of the mind to a far greater extent than physical dysfunction. Although clinical approaches to chronic pain have undergone significant changes in the past 50 years, the legacy of Cartesian mind–body dualism, the notion that pain can be mental or physical, but not both, continues to influence medical explanations of pain. Buchbinder [ 19 ] has discussed vision as a privileged epistemological model for physicians, showing how in their efforts to read the body they seek out an observable pathology to legitimize pain. Chronic pain’s ability to evade imaging and other techniques of quantification, imbues it with a quality of uncertainty that challenges deeply held assumptions about divisions between mental and physical states. As such, the invisibility of chronic pain often means that it is not accountable for the same evidentiary truths as acute pain [ 12 , 20 ]. Participants’ concerns with being misrepresented as “drug-seekers” reflects an awareness of the moral ambiguity surrounding chronic pain. Thus, patients’ insistence in being believed goes beyond mere provider acknowledgement of symptom experience, conveying deeper concerns with the social meaning of those symptoms, such as the ascription of individual responsibility for symptoms (e.g., self-blame) or the stigma of urological chronic pelvic pain. Attempts to distinguish physical from psychological contributions to chronic pelvic pain have identified pain catastrophizing as one of the most salient psychosocial variables in IC/BPS treatment [ 21 ]. Defined as an exaggerated negative mental mindset, other components of pain catastrophizing include: magnification, undue anxiety about pain, excessive focus on negative outcomes, and helplessness [ 22 ]. Although studies measuring pain catastrophizing in IC/BPS patients have rightfully demonstrated the co-constitutive nature of biology and social/psychological stress in the experience of pain, patients’ reception of the use of psychometric instruments (e.g., the pain catastrophizing scale) in clinical encounters is less clear and may confirm their concerns of provider disbelief. These reservations are reflected in our findings, as we found that despite listing a positive attitude and calm mental state as a primary strategy for symptom prevention [ 8 ], participants were reluctant to link their symptoms to mental or emotional processes (i.e., “willing” their symptoms into existence), interpreting referrals for psychological evaluation as yet another example of provider disbelief: “every doctor came in, psychiatrist—because you’re crazy.” Thus, whereas previous studies demonstrate the benefits of adding a pain psychologist to the health care team [ 23 ], it is important for providers to clearly communicate their role in pain management, rather than determining the organic versus psychological pathology of IC/BPS. We also wish to highlight the relationship between pain catastrophizing and gender as a relevant variable in clinical encounters. A well-established body of literature has documented gender differences in how pain is both experienced and treated, showing that despite their higher prevalence of chronic pain conditions, women are more likely to have their pain discounted by providers [ 24 ]. Moreover, women consistently report higher scores in pain catastrophizing [ 25 ]. In our study, those who viewed their gender as a barrier to treatment expressed frustration that being a woman in a urology clinic meant that even when their pain was believed, it was assumed to be overstated. This warrants some reflection. On the one hand, pain catastrophizing words like “pain exaggeration ,” “ magnification ,” “ excessive focus on negative thoughts,” and “ undue anxiety” assume a universal threshold for pain endurance. Although a potentially useful tool for measuring psychological factors in pain perception, providers should also consider how culture and socialization account for gender differences in pain reporting, such as different ways in which men and women communicate their pain, and how providers treat that pain [ 10 ]. On the other hand, years of having their pain routinely dismissed may explain why some women feel pushed to catastrophize; emphatically describing the severity of their symptoms in response to dismissal in order to call forth their symptoms into the realm of observable—believable—pathology. After multiple incidents of provider disbelief, some women appeared to be responding in kind, casting off their own belief in biomedicine as the optimal source for IC/BPS support. As participants anguished over their struggle to come to terms with the “forever” quality of their condition, some of the harshest comments came from participants who no longer visited clinicians, as they perceived them to be unable to respond to the chronicity of their condition. Reflecting on a future forever altered by chronic pain, many participants framed their struggle as re-taking control of their lives by pursuing alternatives in prevention, treatment, and philosophy. Thus, these women’s decisions highlight how the act of believing is a two-way street that meets in the clinic. As a final consideration, these results reflect a range of experiences that emerged naturally in a re-analysis of guided group discussion related to IC/BPS flare experiences. Far from a comprehensive analysis of all factors related to the provider–patient relationship, this analysis seeks to bring awareness to the ubiquity of negative encounters, disbelief, and gender-based inequities that female chronic pain patients experience throughout their diagnostic journeys. Future work should build upon these findings by focusing on specific individual and structural characteristics that contribute to the overall provider–patient relationship (e.g., the sex and specialty of the provider).

To our knowledge, no studies have been centered on IC/BPS female patients’ experiences of provider disbelief and pain dismissal. Thus, the impact of these negative experiences on patients’ perspectives of medical intervention, psychosocial wellbeing, and ability to manage their symptoms remains unclear. By introducing these perspectives into the literature, we hope to influence the way in which clinicians approach patients suffering from IC/BPS. We argue that knowledge of the struggles, anxieties, and gendered inequities that female chronic pain patients experience in their diagnostic journey will enrich patient-centered treatment and improve the well-known delay in diagnosing IC/BPS. Belief in the form of provider validation and mutual respect exerts a critical influence on the way in which patients interpret and learn to live with this puzzling disorder.

Interstitial cystitis/bladder pain syndrome (IC/BPS) is a common, but poorly understood source of urological chronic pelvic pain that primarily affects women. Lacking a concrete pathological etiology or standardized treatment, IC/BPS is a diagnosis of exclusion, defined by the presence of persistent pelvic or bladder pain or discomfort and urinary symptoms, such as urgency and frequency [ 1 ]. IC/BPS symptoms are highly individualized and fluctuating, often appearing alongside other chronic pain conditions, including irritable bowel syndrome and fibromyalgia [ 2 , 3 ]. Interdisciplinary research has long noted a gap between health care providers’ perceptions of their patients’ health care beliefs, values, and experiences and patients’ actual beliefs, values, and experiences [ 4 , 5 ]. To address this gap, investigators have recently begun to use qualitative methodology to explore the day-to-day experiences of patients living with IC/BPS [ 6 , 7 ]. In the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network, we previously used this methodology to describe symptom exacerbations (“flares”) and their impact on patients’ quality of life, documenting a negative impact on multiple aspects of participants’ lives including their social engagement [ 8 ]. Beyond the physical aspect of IC/BPS, previous studies have also shown how a lack of understanding from family, friends, and employers contributes to feelings of isolation, particularly when symptoms are met with incredulity, casting doubt on the “realness” (or biological origin) of patients’ conditions [ 6 , 9 – 11 ]. In one study, skepticism from medical providers was shown to have an especially pernicious effect on patient satisfaction and outlook [ 11 ], a phenomenon that we also noted in our previous focus group study. Prior investigations into other similarly complex chronic pain conditions such as endometriosis and fibromyalgia have underscored the fundamental role that physician validation of symptom experiences has on health outcomes [ 12 , 13 ]. However, although allusions to the importance of physician–patient encounters are present throughout the IC/BPS literature, the topic of provider disbelief and pain dismissal is not well studied and no qualitative studies, to our knowledge, focused on this aspect of patients’ lived experience. Therefore, we re-analyzed our previous MAPP focus group data, recoding for discussion related to provider–patient interactions ( Table 1 ).