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. Author manuscript; available in PMC: 2024 Apr 16.
Published in final edited form as: Int Urogynecol J. 2023 Nov 22;35(1):139–148. doi: 10.1007/s00192-023-05677-0

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

Victoria L Brown 1,2, Aimee James 1, Jean Hunleth 1, Catherine S Bradley 3, John T Farrar 4, Priyanka Gupta 5, H Henry Lai 6, Jerry L Lowder 1,2, Robert Moldwin 7, Larissa V Rodriguez 8, Claire C Yang 9, Siobhan Sutcliffe 1,2
PMCID: PMC11019919  NIHMSID: NIHMS1982716  PMID: 37991567

Abstract

Introduction and hypothesis

Although allusions to the importance of a good physician–patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients’ perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients’ perception of clinical encounters.

Methods

We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician–patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters.

Results

Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients’ health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; “testing” physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine.

Conclusions

The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician–patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.

Keywords: Chronic pain, Delayed diagnosis, Interstitial cystitis, Patient–provider encounter, Qualitative, Women

Introduction

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, 911]. 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).

Table 1.

Central themes, relevant topics, and illustrative quotes

Emergent theme Topic Quotation
1. Dismissing women’s pain Invisible pain “The most frustrating part…has been people—and doctors especially—not understanding, or not believing the pain or when you went to see the doctor, they’d look at you and they’d go ‘you look fine.’”
Exaggerated pain “I went to the doctor and I said, ‘Everything’s falling out of me. I hurt.’ And he said, ‘Well, you’re just going to have to go home and think happy thoughts…it’s probably related to stress.’ That’s a quote…he is retired now.”
“They know about ED. They know everything else on…the urologist—if you don’t have a penis, they don’t really want to…there was no serious treatment interest.”
Psychosomatic pain “For a while you start to think before you’re diagnosed, well, maybe it is just in my head.”
2. Refusing to listen (and believe) women’s pain stories and its effect on the clinical encounter Lack of quality communication “The way this is treated is kind of like psychiatry where nobody knows what’s going to work and people are just given different types of medicine based on whatever disorder they have…there was one [medicine] that my doctor tried to give me, then she told me my hair was going to fall out. And like, it was, in the shower. I was putting it on the wall…1 started to be like, I can’t do this. I can’t be taking pills and losing my hair.”
Misdiagnosis; empirical prescription of antibiotics “So many times I have gone to the doctor and said, ‘My pelvic just hurts.’ And, I’m like, ‘I really feel like I have to go to the bathroom. Please.’ And then they send me antibiotics. And then they go, ‘You know what, the infection didn’t show up in your pee.”
“I had a same story…a year of, ‘Oh, it sounds like a UTI. There’s not really any bacteria in your urine, but let’s just give you antibiotics. “I feel like I wasn’t taken that seriously. And that I was just prescribed antibiotic after antibiotic.
Adherence to protocol in place of listening to patient “People with IC go to doctor to doctor, and medicines. I went through, you know, “the trial.” All the overactive bladder medicines, the physical therapy…the procedure with the dye…the cystoscopy. Every time I go to a new doctor they’re like, ‘Okay, we got to do the test again.’ It’s like, ‘It’s going to come back normal.’ And you know, it does.”
Nurses and clinical staff unfamiliar with IC/BPS; seen as an obstacle “It’s to the point now with my doctor, he’s so good…But you got to get through the frickin nurse.” “I think an IC doctor really needs to talk to his staff…a lot of times it’s just fighting through the staff to get to the doctor.”
3. Taking matters into their own hands: self-education and shared-decision making Providers need more training in IC/BPS “I’ve been through so many horrible doctors that just are flat out ignorant.”
“There are still doctors that don’t…they never heard of such a thing as IC, even urologists.”
The patient-researcher; embodied knowledge through lived experience “I’m sure you guys can relate…we all do our own research for ourselves. Right? I mean we all have all kept tabs on how our bodies work and what works best for us…so to all of a sudden…have to put it in their hands…it’s like, no. I’ve been living with this for two years. I know what’s going to work for me and I’m always right. But you won’t do it because you don’t believe me or you don’t trust me or you don’t know that I know.”
“We all have similar symptoms…but then there are these minute differences that are just personal…that’s just how our bodies work individually…my doctor is not going to know that…that would remove a big component of anxiety for me, to be the person that determines the kind of care I get, when I get it, how I get it.”
“I know more about this than a random doctor that I would see at the ER. Or at least I know more about it–and then the way it works for my body. And so, to have to tell the story every time…I wish I could self-determine my care more…I’ve just been through all this shit, and I’d really love to have the option to press a button and get the right type of medication. Or be able to just go and see somebody…and have them believe me.”
4. Moralizing chronic pain Self-management of symptoms through self-discipline; ascription of responsibility for symptoms “Do you guys ever feel like your flares are your fault on some level? You ate the wrong thing, did the wrong thing, allowed the wrong stress, moved the wrong direction, had too much sex…drank beer?…We’re all doing something to try to have some control of our lives…When you have breast cancer it’s like, ‘Oh, that’s terrible! ‘ [But if] you have a bladder disease… ‘Yeah, I’m a pee-your-pants-kind-of-girl! ‘ (said with sarcasm) I mean, if you run into this, how do you explain it? For me, it’s control…I gained controlled of everything in my life, and I’m obsessive. Somewhere along the line it’s going to be my fault for whatever I have done to cause my problem.
“I don’t identify with it. I did for years, and then I said ‘no, I’m done.’ I threw all my medication out. I said I’ve got to take control, because I couldn’t do it anymore.”
“I had a pill dumping party. [Now] My life is extremely rigidly controlled. I don’t eat any flour. I haven’t in 15 years. I don’t eat anything with corn syrup. I don’t do any dairy…I don’t touch it. I still have pain. I will have interstitial cystitis for the rest of my life. But for me to control it, it’s through my diet…I watch everything that goes in my mouth.”
Patients’ anxieties around the morality of pain management and the type of person their provider perceives them to be “Being young, it’s hard to find like pain management that’ll actually take you on without accusing you of being a drug addict or being, you know, dependent on drugs, which, I mean, to an extent I am. But it’s just hard to find somebody to take you on, because a lot of people don’t know what IC is.”
“…does she have Hepatitis? Does she have an STD?’…that got me into further depression and anger. I dropped really low under depression…I was about 14 when all this happened…it has ruined my life.”
5. Finding a “believer” Finding a physician who validates pain, symptoms “I think finding out I had IC was kind of—it was a good thing, it was a beginning.”
Comparisons between providers who affirm and validate (“believe”) and those who invalidate and dismiss “Education to the communities is very important so that those outside urologists can refer to urologists that are believers. Because I know there’s both.”
“For a long time I had been undiagnosed, I went to a urologist five years ago and I guess this wasn’t as…maybe it just happened to be who I went to or whatever, and they were sort of like, ‘Oh, that’s just the way your plumbing works.’”
For me, personally, it’s been credibility. Because I feel like until I came here, the doctors where I’m from would just write me off. And not understand. Maybe it was my communication skills that were lacking…you have to tell this whole story and you end up knowing more than they do. And you’re coming to them for help. And if they’re not going to take you seriously, then you’re totally like, it’s not even worth your time.
Preference for CAM providers because they “believe,” offer alternative therapies “I think the ‘no cure’ sort of talk…I’ve found the most relief from alternative medicine, rather than urology…I sort of just started to get better once I started going to an acupuncturist…just trying to go to alternate sources other than just what I was told by different doctors.”
“I hope that they look at alternatives like homeopathy and study them a bit more because it has given me so much relief…And things like massage and things like that that might be able to help because there are people like me that don’t do very well with drug therapies.”
Physicians perceived to be only interested in drug therapy “It’s like-you had Polio as a kid-okay, so you don’t walk quite right. You deal with it and move on…parallel to diabetes, like once you have it you always have it…I go to fibromyalgia clinics, and all they want to do is sit around and whine. I am like, get up and fix it…get up and fight…I had to take my life back and control it, and quit giving it to a doctor with a prescription pad.”

IC interstitial cystitis, BPS bladder pain syndrome, CAM complementary and alternative medicine

Materials and methods

Study design and population

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.

Study procedures

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.

Qualitative data analysis

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.

Results

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:

  1. 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.
    1. 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.
    2. 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.”
    3. 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.”
  2. 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.”

  3. 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.

  4. 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.

  5. 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).

Discussion

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.

IC/BPS patients want to be heard and long for community

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.

A patient-centered approach means taking personal experiences, beliefs, and embodied knowledge into account

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.

“Believe me!”: Illness narratives of IC/BPS and the social meaning of chronic pelvic pain

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.

The relationship between catastrophizing and gender in clinical encounters

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.

Disillusionment: women’s loss of belief in the clinical encounter

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).

Conclusions

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.

Acknowledgements

We thank the research coordinators at each focus group site (Mary Eno, Vivien Gardner, Megan Halvorson, Nuwanthi Heendeniya, Ginny Leone, Ratna Pakpahan, and Suzanne Smith) for recruiting participants and coordinating the focus groups; and the participants for their participation. This study was funded by MAPP Research Network grants, NIH DK082370, DK082344, DK082345, DK082315, and DK082316; as well as T32DK120497.

Footnotes

Conflicts of interest None.

Data Availability

Our research team views managing, preserving, and sharing data with professional colleagues, other institutions, and the public as one of the key responsibilities of public health and anthropological research. The data are not publicly available because the minimal data set for this study contains identifying patient-level data that cannot be suitably de-identified or aggregated. Proposals for access to this data should be directed to Dr. Siobhan Sutcliffe, sutcliffes@wustl.edu. To gain access, data requestors will need to sign a data access agreement.

References

  • 1.Hanno P, Dmochowski R. Status of international consensus on interstitial cystitis/bladder pain syndrome/painful bladder syndrome: 2008 snapshot. Neurourol Urodyn. 2009;28:274–86. [DOI] [PubMed] [Google Scholar]
  • 2.Bullones Rodríguez MÁ, Afari N, Buchwald DS, National Institute of Diabetes and Digestive and Kidney Diseases Working Group on Urological Chronic Pelvic Pain. Evidence for overlap between urological and nonurological unexplained clinical conditions. J Urol. 2013;189:S66–74. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 3.Nickel JC, Tripp DA, Pontari M, et al. Interstitial cystitis/painful bladder syndrome and associated medical conditions with an emphasis on irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome. J Urol. 2010;184:1358–63. [DOI] [PubMed] [Google Scholar]
  • 4.Kennedy BM, Rehman M, Johnson WD, Magee MB, Leonard R, Katzmarzyk PT. Healthcare providers versus patients’ understanding of health beliefs and values. Patient Exp J. 2017;4:29–37. [PMC free article] [PubMed] [Google Scholar]
  • 5.Greenhalgh S Under the medical gaze: facts and fictions of chronic pain. Berkeley: University of California Press; 2001. [Google Scholar]
  • 6.Kirkham A, Swainston K. Women’s experiences of interstitial cystitis/painful bladder syndrome. West J Nurs Res. 2022;44:125–32. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 7.Gonzalez G, Vaculik K, Khalil C, et al. Experiences of women with interstitial cystitis/bladder pain syndrome: what can we learn from women’s online discussions? J Urol. 2022. 10.1097/JU.0000000000002955. [DOI] [PubMed] [Google Scholar]
  • 8.Sutcliffe S, Bradley CS, Clemens JQ, et al. Urological chronic pelvic pain syndrome flares and their impact: qualitative analysis in the MAPP network. Int Urogynecol J. 2015;26:1047–60. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 9.Kanter G, Volpe KA, Dunivan GC, et al. Important role of physicians in addressing psychological aspects of Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS): a qualitative analysis. Int Urogynecol J. 2017;28:249–56. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 10.Windgassen SS, Sutherland S, Finn MTM, et al. Gender differences in the experience of interstitial cystitis/bladder pain syndrome. Front Pain Res (Lausanne). 2022;3:954967. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 11.Wygant JN, McGuire LJ, Bush NM, Burnett TL, Green IC, Breitkopf DM. What makes a chronic pelvic pain patient satisfied? J Psychosom Obstet Gynaecol. 2019;40:239–42. [DOI] [PubMed] [Google Scholar]
  • 12.Lobo CP, Pfalzgraf AR, Giannetti V, Kanyongo G. Impact of invalidation and trust in physicians on health outcomes in fibromyalgia patients. Prim Care Companion CNS Disord. 2014;. 10.4088/PCC.14m01664. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 13.Toye F, Seers K, Barker K. A meta-ethnography of patients’ experiences of chronic pelvic pain: struggling to construct chronic pelvic pain as ‘real.’ J Adv Nurs. 2014;70:2713–27. [DOI] [PubMed] [Google Scholar]
  • 14.Pope C, Ziebland S, Mays N. Qualitative research in health care. Analysing qualitative data. BMJ. 2000;320:114–6. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 15.Jackson J “After a while no one believes you”: real and unreal pain. In: Pain as human experience: an anthropological perspective. Berkeley: University of California Press; 1994. p. 138–68. [Google Scholar]
  • 16.Nickel JC, Tripp DA, Beiko D, et al. The interstitial cystitis/bladder pain syndrome clinical picture: a perspective from patient life experience. Urol Pract. 2018;5:286–92. [DOI] [PubMed] [Google Scholar]
  • 17.Mattingly C, Garro LC, editors. Narrative and the cultural construction of illness and healing. Berkeley: University of California Press; 2000. [Google Scholar]
  • 18.Garro L Chronic illness and the construction of narratives. In: Pain as human experience: an anthropological perspective. University of California Press, Berkeley: ; 1992. p. 100–37. [Google Scholar]
  • 19.Buchbinder M All in your head: making sense of pediatric pain. Berkeley: University of California Press; 2015. [Google Scholar]
  • 20.Asbring P, Närvänen A-L. Ideal versus reality: physicians perspectives on patients with Chronic Fatigue Syndrome (CFS) and fibromyalgia. Soc Sci Med. 2003;57:711–20. [DOI] [PubMed] [Google Scholar]
  • 21.Crawford A, Muere A, Tripp DA, et al. The chicken or the egg: longitudinal changes in pain and catastrophizing in women with interstitial cystitis/bladder pain syndrome. Can Urol Assoc J. 2021;15:326–31. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 22.Sullivan MJL, Bishop SR, Pivik J. The pain catastrophizing scale: development and validation. Psychol Assess. 1995;7:524–32. [Google Scholar]
  • 23.McKernan LC, Bonnet KR, Finn MTM, et al. Qualitative analysis of treatment needs in interstitial cystitis/bladder pain syndrome: implications for intervention. Can J Pain. 2020;4:181–98. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 24.Hoffmann D, Tarzian A. The girl who cried pain: a bias against women in the treatment of pain. J Law Med Ethics. 2001;29:13–27. [DOI] [PubMed] [Google Scholar]
  • 25.D’Eon JL, Harris CA, Ellis JA. Testing factorial validity and gender invariance of the pain catastrophizing scale. J Behav Med. 2004;27:361–72. [DOI] [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

Our research team views managing, preserving, and sharing data with professional colleagues, other institutions, and the public as one of the key responsibilities of public health and anthropological research. The data are not publicly available because the minimal data set for this study contains identifying patient-level data that cannot be suitably de-identified or aggregated. Proposals for access to this data should be directed to Dr. Siobhan Sutcliffe, sutcliffes@wustl.edu. To gain access, data requestors will need to sign a data access agreement.

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