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Painful Bladder Syndrome: What Do Patients Mean By “Perceived” Bladder Pain?
Female Urology Interstitial Cystitis/Painful Bladder Syndrome: What Do Patients Mean By “Perceived” Bladder Pain? John W. Warren, Christina Diggs, Linda Horne, and Patty Greenberg OBJECTIVES
METHODS
RESULTS
CONCLUSIONS
To report the reasons patients with interstitial cystitis/painful bladder syndrome (IC/PBS) give for the perception that the bladder is the source of their pain. The perception that the bladder is the source of pain is a necessary criterion for many definitions of IC/PBS. Events Preceding Interstitial Cystitis was a case-control study seeking risk factors for IC/PBS. The inclusion criteria for incident cases included “lower abdominal pain” or “bladder pain” and ⱖ2 of the following symptoms: urinary frequency, urgency, and/or nocturia. The patients were systematically followed and at 18 months after the baseline interview were asked an open-ended question about their reasons for perceiving the bladder to be the source of their pain. Of the 179 patients with current pain, 164 (92%) claimed ⱖ1 bladder or lower urinary tract symptoms caused them to perceive that their pain involved the bladder. Of these, 41% noted a “bladder” location for their pain; 34% noted pain increasing with bladder filling and/or decreasing with bladder emptying; 31% claimed the presence of urgency and/or frequency; 23% described worsened pain during and/or after urination; and 17% mentioned other urinary symptoms. Finally, 8% noted only nonurinary symptoms (4 patients) or “do not know” (11 patients). No predominant reason was found that patients with IC/PBS gave for suspecting the bladder to be the source of pain. The common reasons included pain location, changes with the urinary cycle, and an association with other urinary symptoms. To clarify the relationship of IC/PBS to other chronic pain syndromes, which often are comorbidities, these features of IC/PBS should be queried. UROLOGY 77: 309 –312, 2011. © 2011 Elsevier Inc.
I
nterstitial cystitis/painful bladder syndrome (IC/PBS) comprises pelvic pain and urinary symptoms.1 At present, it is diagnosed primarily in women and is of unknown etiology.1 Although it has been diagnosed since the late 19th century, it was not until 100 years later that a definition of the disease was widely accepted. This definition was constructed by a group of experienced urologists convened by the National Institute of Diabetes, Digestive and Kidney Diseases that described the pain of IC/PBS as “. . .pain associated with the bladder. . . .”2 Several definitions of IC/PBS put forth since then have maintained pain as a central criterion. The International Continence Society limited the pain of IC/PBS to “. . .suprapubic pain related to bladder filling. . . .”3 The European Society for the Study of Interstitial Cystitis promulgated “. . .pelvic pain, pressure, or discomfort perceived to be related to the urinary bladder. . . .”4 The first This study was supported by the National Institute of Diabetes, Digestive and Kidney Diseases, National Institutes of Health grants R01 DK 064880 and U01 DK 066136. From the Departments of Medicine and Epidemiology and Public Health, University of Maryland School of Medicine, Baltimore, Maryland Reprint requests: John W. Warren, M.D., Department of Medicine, University of Maryland School of Medicine, 10 South Pine Street, No. 900, Baltimore, MD 21201.E-mail: [email protected] Submitted: July 15, 2010; accepted (with revisions): August 21, 2010
© 2011 Elsevier Inc. All Rights Reserved
guidelines for IC/PBS management from the American Urological Association used “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder. . . .”5 During the more recent of these deliberations, we were conducting a case-control study of IC/PBS to identify its risk factors. To ensure the chronicity of the incident disease and to assess its early longitudinal history, we systematically re-interviewed the patients with IC/PBS. Because many of the proffered definitions of IC/PBS have described its pain as “associated with,” “related to,” or “perceived to be related to” the urinary bladder, we wondered what characteristics of the pain caused patients with IC/PBS to perceive that it involved the bladder. To our knowledge, answers to such a question have never been reported. Consequently, at the 18-month follow-up visit, we asked patients with IC/PBS why they thought the bladder was the source of their pain.
MATERIAL AND METHODS Detailed methods of Events Preceding Interstitial Cystitis have been previously published.6,7 In brief, this was a national study of women ⱖ18 years old with IC/PBS of recent onset. The patients were recruited through patient and physician organi0090-4295/11/$36.00 doi:10.1016/j.urology.2010.08.030
309
zations using letters, brochures, posters, newsletters, and electronic mail by way of national meetings, toll-free telephone lines, and the Internet. The inclusion criteria were ⱖ4 weeks of “lower abdominal pain” or “bladder pain” and ⱖ2 of the following symptoms: urinary frequency, urgency, and/or nocturia. These criteria met the definitions of IC/PBS recently put forth by the Fourth International Consultation on Incontinence,8 the European Society for the Study of Interstitial Cystitis,4 and the American Urological Association.5 The first symptom had to be ⱕ12 months before enrollment and the syndrome had to have been evaluated by a physician. Medical records were obtained to confirm the IC/PBS onset date, abstract the diagnostic and therapeutic measures, and rule out other diseases with similar symptoms. The patients and controls were administered an extensive telephone interview. Of the patients, 95% agreed with the statement: “the phrase, ‘pain, pressure, or discomfort’ is a good way to describe the sensations I have from IC.”9 The patients were systematically re-interviewed by female interviewers for the duration of the 5-year study; those enrolled earlier had more follow-up visits than those enrolled later. At each follow-up visit, IC/PBS symptoms were queried. We assessed the severity of “bladder pain, pressure, or discomfort” using a Likert scale (0, none to 10, as bad as you can imagine), and how often the pain was experienced. At the 18-month follow-up visit, immediately after these questions, the following was requested: “Tell me, in your own words, how you know that the bladder is the source of this pain,” and the verbatim responses were recorded. One investigator (J.W.W.) abstracted the responses and categorized them by the common findings. A “bladder” location was coded if the patient mentioned the lower abdominal or suprapubic region or some variant of “bladder” area as the site of the pain. Pain changes with the urinary cycle were categorized as pain that increased with filling, decreased with voiding, increased during voiding, or increased after voiding. Variants of urinary tract infection, because burning on urination is a prominent symptom, were categorized as a separate group in the pain that increased during voiding category. Variants of urge or urgency were coded as “urgency.” “Frequency” was coded if ⬎8 urinations per 24 hour period or a variant of “many” urinations was in the response. If the patient noted several reasons, they were coded as first mentioned, second, and so forth. “Do not know” included variants of “because that is what the doctor told me.”
RESULTS A total of 312 women (median age 44 years) with recent IC/PBS were enrolled and underwent the baseline interview at a mean of 9 months after onset of IC/PBS symptoms. Pain, urinary symptoms, and proportions with Hunner’s ulcer were characteristic of IC/PBS, and 96% of the patients had either received a written diagnosis of IC/PBS or medications commonly used for IC/PBS.6 At the 18-month follow-up period after the baseline interview, 210 patients were interviewed. Of the 210 patients, 31 reported no IC/PBS pain in the previous week and did not answer the open-ended question about “. . .how you know that the bladder is the source of this pain.” The remaining 179 responded as follows: 72 (40%) mentioned a single reason, 96 (54%) noted several reasons (range 2-4), and 11 (6%) responded “do not know” (Table 1). 310
Table 1. Reasons given for bladder considered source of pain (n ⫽ 179) Reason Stated
Total
Stated First
“Bladder” location Increased with filling Decreased with emptying With urgency With frequency Pain during urination “Like urinary tract infection” Increased after voiding Bladder spasms Pain in urethra Other urinary symptoms Nonurinary symptoms Do not know Total reasons
73 (41) 29 (16) 40 (22) 39 (22) 22 (12) 29 (16) 6 (3) 13 (7) 11 (6) 8 (4) 14 (8) 18 (8) 11 (6) 313
50 (28) 8 (4) 16 (9) 25 (14) 11 (6) 16 (9) 4 (2) 7 (4) 7 (4) 6 (3) 5 (3) 13 (7) 11 (6) 179 (100)
Data presented as number of reasons, with percentage of patients in parentheses.
Of the 179 patients, 73 (41%) stated that the location of pain was the reason they perceived the bladder as its source, and for 50 (28%), this was the first item mentioned. The examples included “exactly where the bladder is,” “I have pain between my lower abdomen and mons pubis,” “pressure in the abdomen,” “mostly location; just above the public bone.” A total of 60 women (34%) noted pain increasing with bladder filling and/or decreasing with bladder emptying (9 noted both; eg, “bladder discomfort just before urination, gets better after voiding”). A total of 56 (31%) stated the presence of urinary urgency (eg, “constant feeling of having to urinate”) and/or frequency (eg, “I have to go to the bathroom 20 times a day”) was the reason (5 noted both). Arising at night to urinate was not noted as a reason by any patient. Pain worsening during or after urination was cited as a rationale for associating it with the bladder for 42 respondents (23%). This group also included those who claimed pain during urination (n ⫽ 29). This was often described as “burning” (eg, “I get burning when I pee”); only 2 noted a location, 1 the bladder and 1 in the urethra. Another 6 patients noted the pain resembling that with a urinary tract infection. The last members of this group were those who described pain worsening after urination (eg, “Because after I urinate, my bladder throbs and feels swollen”; n ⫽ 13). A total of 30 patients (17%) reported 33 other urinary symptoms as reasons. Of these 30 women, 11 mentioned “spasms,” with some noting these occurring after urination; 8 noted urethral pain (without commenting on exacerbation during urination) as a reason for suspecting the bladder as the source of pain (eg, “my urethra feels like I have a stick in it”); and 14 noted a variety of other symptoms related to the urinary tract, including voiding only a few drops (n ⫽ 4), straining to urinate (n ⫽ 2), and otherwise undescribed difficulty in urinating (n ⫽ 2). Finally, 15 patients (8%) gave 18 descriptions that, at least in the absence of other knowledge, did not appear to UROLOGY 77 (2), 2011
focus attention on the urinary tract. These included worsening of pain with dietary items (n ⫽ 10) or during menses (n ⫽ 2), stress (n ⫽ 2), or sex (n ⫽ 1) and descriptions of pain as vaginal burning and similar to menstrual cramps or vaginal delivery (n ⫽ 1 each). However, only 4 patients (2%) noted such “nonurinary” symptoms without also mentioning ⱖ1 of the urinary symptoms previously mentioned. Subtracting these 4 patients and the 11 with “do not know” indicated that 164 (92%) of 179 women with IC/PBS used symptoms based on the bladder or lower urinary tract to “perceive” that their pain involved the bladder. The patients were categorized by their first stated reason into 6 groups: “bladder” location (n ⫽ 50), changes in pain with bladder filling/emptying (n ⫽ 24), urgency/frequency (n ⫽ 36), worsening pain during/after urination (n ⫽ 27), other urinary symptoms (n ⫽ 18), and do not know/nonurinary symptoms (n ⫽ 24). These mutually exclusive groups were not significantly different in mean age, racial distribution, or severity of pain, urgency, frequency, or nocturia at the 18-month follow-up interview.
COMMENT Of interest to us was that no reason for suspecting the bladder to be the source of pain predominated. Practical consolidation schemes still yielded 6-12 categories, and none had been put forth by a majority of patients (Table 1). Recently, preliminary work for a RAND (Santa Monica, CA) prevalence study of IC/PBS revealed difficulty in finding a single symptom-based definition of IC/PBS with both sufficient sensitivity and specificity to separate patients with IC/PBS from those with physiciandiagnosed overactive bladder, vulvodynia, or endometriosis.10 The investigators noted 3 possible reasons for the difficulty in disentangling these syndromes: “. . .the true overlap of symptoms across these conditions, and. . . the accuracy of measurement and clinical diagnoses of these conditions.” The symptoms of other syndromes do overlap those of IC/PBS. These include not only the pelvic conditions studied by RAND, but also others, such as irritable bowel syndrome, and systemic syndromes, such as fibromyalgia.7 To compound this confusion, many of these conditions with overlapping symptoms are diagnosed in the same patient. That is, vulvodynia, chronic pelvic pain, irritable bowel syndrome, and fibromyalgia are epidemiologically associated with IC/PBS.7,11 Another question is the accuracy of measurement of these conditions. It is unknown whether some of the overlapping symptoms might actually be sufficiently different to distinguish these syndromes. For instance, it is unknown whether the urgency experienced by those with overactive bladder differs from that experienced by those with IC/PBS. Also, it is unknown whether the pain associated with endometriosis is distinctive from that of IC/PBS. It is not known what convinces patients that a particular pain is not from their irritable bowel syndrome or fibromyalgia but rather “involves” the bladder. Thus, UROLOGY 77 (2), 2011
nuances of symptoms might allow the discrimination of these syndromes. This “splitting” would go against the trend of recent years of “lumping” symptoms.12 Such work has been begun for several of these symptoms.9,13-18 However, it that adequate symptom descriptions will not yield accurate clinical diagnoses. Clemens et al,19 referring to the urologic syndromes of IC/PBS, overactive bladder, benign prostatic hyperplasia, and chronic prostatitis/chronic pelvic pain syndrome, stated: “If symptoms overlap to a large degree, it would imply that the distinction among these various syndromes is rather arbitrary.” An extrapolation of this logic to the pelvic and systemic syndromes we have noted suggests that a similarity of symptoms—particularly when coupled with the comorbidity of these syndromes—might have nosologic implications; if boundaries cannot be identified between syndromes, are they different diseases?20,21 The present study had limitations. We studied only women, and these findings might not apply to men with IC/PBS. Although the participants were characteristic of published patients with IC/PBS, they might not be characteristic of the entire population of patients with IC/ PBS, some of whom seek care from urologists, others from gynecologists, and some who do not seek care at all. None of our patients were medically naive: an enrollment criterion was that they sought medical care for their symptoms and almost all had been prescribed medications commonly used for IC/PBS and/or had had the words “interstitial cystitis” written in their medical records. Thus, we were unable to distinguish a patient’s native insight from what was learned from a physician or other sources, such as the Internet. The patients who noted nonurinary symptoms characteristic of IC/PBS (eg, worsening with certain dietary items, menstruation) likely reflect knowledge acquired during medical framing of the disease. Thus, the findings might be an amalgam of what patients and their clinicians used to “perceive” that the bladder was the source of pain. We observed that none of the suggested definitions stated whether the patient or the clinician should determine that the pain is “associated with,” “related to,” or “perceived to be related to” the urinary bladder. The format of the present study was advantageous in that it allowed the patient to use her own words and hence set her own priorities about what to tell us. A disadvantage was that simply because a reason was not mentioned did not mean that it was not experienced. Symptoms are the heralds of a disease that prompt a patient to seek medical care. It then is the task of the patient and clinician to reveal a sufficient description of the symptoms to prompt an appropriate diagnosis of the disease. To the extent that the pain the patients “perceive” to be from the bladder is a characteristic of IC/PBS, it might be important to understand what sensory experiences patients are using to interpret that the pain involves the bladder. Open-ended descriptions followed, as necessary, by specific questions should include many of the topics we have dis311
cussed. Providing graphic drawings of the anterior, posterior, and perineal views of the human body might assist the patient in identifying their sites of pain.9 Asking whether the pain “gets worse, gets better, or stays the same” before, during, and after urination offers nonleading options to the patient.9 Our interviewers found that for urgency, the expression, “the compelling urge to urinate that is difficult to postpone” was well understood and could be used to complete a Likert scale.16 Additionally, although the focus on pain as a required symptom in this syndrome has increased, clinicians have recognized that over time pain might become less prominent in a proportion of patients with IC/PBS.22
CONCLUSIONS In our study, the patients with IC/PBS perceived “bladder” pain by its location, by changes with the urinary cycle, and in association with other urinary symptoms. To clarify the relationship of IC/PBS to other chronic pain syndromes, which could be comorbidities, these features of IC/PBS should be queried. References 1. Hanno P, Lin A, Nordling J, et al. Bladder pain syndrome committee of the international consultation on incontinence. Neurourol Urodyn. 2010;29:191-198. 2. Wein AJ, Hanno PM, Gillenwater JY. Interstitial cystitis: an introduction to the problem. In: Hanno PM, Staskin DR, Krane RJ, eds. Interstitial Cystitis. London: Springer-Verlag; 1990. 3. Abrams P, Cardozo L, Fall M, et al. The standardisation of terminology of lower urinary tract function: report from the Standardisation Sub-Committee of the International Continence Society. Neurourol Urodyn. 2002;21:167-178. 4. van de Merwe JP, Nordling J, Bouchelouche P, et al. Diagnostic criteria, classification, and nomenclature for painful bladder syndrome/interstitial cystitis: an ESSIC proposal. Eur Urol. 2008;53: 60-67. 5. Hanno PM. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome: AUA guideline. Presented at the Annual Meeting of the American Urological Association, May 2010, San Francisco, California. 6. Warren JW, Brown V, Jacobs S, et al. Urinary tract infection and inflammation at onset of interstitial cystitis/painful bladder syndrome. Urology. 2008;71:1085-1090.
312
7. Warren JW, Howard FM, Cross RK, et al. Antecedent nonbladder syndromes in case-control study of interstitial cystitis/painful bladder syndrome. Urology. 2009;73:52-57. 8. Abrams P, Andersson KE, Birder L, et al. Fourth International Consultation on incontinence recommendations of the International Scientific Committee: evaluation and treatment of urinary incontinence, pelvic organ prolapse, and fecal incontinence. Neurourol Urodyn. 2010;29:213-240. 9. Warren JW, Langenberg P, Greenberg P, et al. Sites of pain from interstitial cystitis/painful bladder syndrome. J Urol. 2008;180: 1373-1377. 10. Berry SH, Bogart LM, Pham C, et al. Development, validation and testing of an epidemiological case definition of interstitial cystitis/ painful bladder syndrome. J Urol. 2010;183:1848-1852. 11. Alagiri M, Chottiner S, Ratner V, et al. Interstitial cystitis: unexplained associations with other chronic disease and pain syndromes. Urology. 1997;49(suppl):52-57. 12. Barry MJ, Fowler FJ Jr, O’Leary MP, et al. The American Urological Association symptom index for benign prostatic hyperplasia: the Measurement Committee of the American Urological Association. J Urol. 1992;148:1549-1557, 1564. 13. FitzGerald MP, Kenton KS, Brubaker L. Localization of the urge to void in patients with painful bladder syndrome. Neurourol Urodyn. 2005;24:633-637. 14. Abrams P, Hanno P, Wein A. Overactive bladder and painful bladder syndrome: there need not be confusion. Neurourol Urodyn. 2005;24:149-150. 15. Diggs C, Meyer WA, Langenberg P, et al. Assessing urgency in interstitial cystitis/painful bladder syndrome. Urology. 2007;69:210214. 16. Greenberg P, Brown J, Yates T, et al. Voiding urges perceived by patients with interstitial cystitis/painful bladder syndrome. Neurourol Urodyn. 2008;27:287-290. 17. Tikkinen KA, Auvinen A, Johnson TM Jr, et al. A systematic evaluation of factors associated with nocturia—the populationbased FINNO study. Am J Epidemiol. 2009;170:361-368. 18. Klingler HC, Heidler H, Madersbacher H, et al. Nocturia: an Austrian study on the multifactorial etiology of this symptom. Neurourol Urodyn. 2009;28:427-431. 19. Clemens JQ, Markossian TW, Meenan RT, et al. Overlap of voiding symptoms, storage symptoms and pain in men and women. J Urol. 2007;178(4 Pt. 1):1354-1358. 20. Kendell R, Jablensky A. Distinguishing between the validity and utility of psychiatric diagnoses. Am J Psychiatry. 2003;160:4-12. 21. Warren JW. Update on interstitial cystitis: still a bladder disease? Curr Bladder Dysfunc Rep. 2009;4:109. 22. Warren JW, Greenberg P, Diggs C, et al. A prospective early history of incident interstitial cystitis/painful bladder syndrome. J Urol. In press.
UROLOGY 77 (2), 2011
METHODS
RESULTS
CONCLUSIONS
To report the reasons patients with interstitial cystitis/painful bladder syndrome (IC/PBS) give for the perception that the bladder is the source of their pain. The perception that the bladder is the source of pain is a necessary criterion for many definitions of IC/PBS. Events Preceding Interstitial Cystitis was a case-control study seeking risk factors for IC/PBS. The inclusion criteria for incident cases included “lower abdominal pain” or “bladder pain” and ⱖ2 of the following symptoms: urinary frequency, urgency, and/or nocturia. The patients were systematically followed and at 18 months after the baseline interview were asked an open-ended question about their reasons for perceiving the bladder to be the source of their pain. Of the 179 patients with current pain, 164 (92%) claimed ⱖ1 bladder or lower urinary tract symptoms caused them to perceive that their pain involved the bladder. Of these, 41% noted a “bladder” location for their pain; 34% noted pain increasing with bladder filling and/or decreasing with bladder emptying; 31% claimed the presence of urgency and/or frequency; 23% described worsened pain during and/or after urination; and 17% mentioned other urinary symptoms. Finally, 8% noted only nonurinary symptoms (4 patients) or “do not know” (11 patients). No predominant reason was found that patients with IC/PBS gave for suspecting the bladder to be the source of pain. The common reasons included pain location, changes with the urinary cycle, and an association with other urinary symptoms. To clarify the relationship of IC/PBS to other chronic pain syndromes, which often are comorbidities, these features of IC/PBS should be queried. UROLOGY 77: 309 –312, 2011. © 2011 Elsevier Inc.
I
nterstitial cystitis/painful bladder syndrome (IC/PBS) comprises pelvic pain and urinary symptoms.1 At present, it is diagnosed primarily in women and is of unknown etiology.1 Although it has been diagnosed since the late 19th century, it was not until 100 years later that a definition of the disease was widely accepted. This definition was constructed by a group of experienced urologists convened by the National Institute of Diabetes, Digestive and Kidney Diseases that described the pain of IC/PBS as “. . .pain associated with the bladder. . . .”2 Several definitions of IC/PBS put forth since then have maintained pain as a central criterion. The International Continence Society limited the pain of IC/PBS to “. . .suprapubic pain related to bladder filling. . . .”3 The European Society for the Study of Interstitial Cystitis promulgated “. . .pelvic pain, pressure, or discomfort perceived to be related to the urinary bladder. . . .”4 The first This study was supported by the National Institute of Diabetes, Digestive and Kidney Diseases, National Institutes of Health grants R01 DK 064880 and U01 DK 066136. From the Departments of Medicine and Epidemiology and Public Health, University of Maryland School of Medicine, Baltimore, Maryland Reprint requests: John W. Warren, M.D., Department of Medicine, University of Maryland School of Medicine, 10 South Pine Street, No. 900, Baltimore, MD 21201.E-mail: [email protected] Submitted: July 15, 2010; accepted (with revisions): August 21, 2010
© 2011 Elsevier Inc. All Rights Reserved
guidelines for IC/PBS management from the American Urological Association used “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder. . . .”5 During the more recent of these deliberations, we were conducting a case-control study of IC/PBS to identify its risk factors. To ensure the chronicity of the incident disease and to assess its early longitudinal history, we systematically re-interviewed the patients with IC/PBS. Because many of the proffered definitions of IC/PBS have described its pain as “associated with,” “related to,” or “perceived to be related to” the urinary bladder, we wondered what characteristics of the pain caused patients with IC/PBS to perceive that it involved the bladder. To our knowledge, answers to such a question have never been reported. Consequently, at the 18-month follow-up visit, we asked patients with IC/PBS why they thought the bladder was the source of their pain.
MATERIAL AND METHODS Detailed methods of Events Preceding Interstitial Cystitis have been previously published.6,7 In brief, this was a national study of women ⱖ18 years old with IC/PBS of recent onset. The patients were recruited through patient and physician organi0090-4295/11/$36.00 doi:10.1016/j.urology.2010.08.030
309
zations using letters, brochures, posters, newsletters, and electronic mail by way of national meetings, toll-free telephone lines, and the Internet. The inclusion criteria were ⱖ4 weeks of “lower abdominal pain” or “bladder pain” and ⱖ2 of the following symptoms: urinary frequency, urgency, and/or nocturia. These criteria met the definitions of IC/PBS recently put forth by the Fourth International Consultation on Incontinence,8 the European Society for the Study of Interstitial Cystitis,4 and the American Urological Association.5 The first symptom had to be ⱕ12 months before enrollment and the syndrome had to have been evaluated by a physician. Medical records were obtained to confirm the IC/PBS onset date, abstract the diagnostic and therapeutic measures, and rule out other diseases with similar symptoms. The patients and controls were administered an extensive telephone interview. Of the patients, 95% agreed with the statement: “the phrase, ‘pain, pressure, or discomfort’ is a good way to describe the sensations I have from IC.”9 The patients were systematically re-interviewed by female interviewers for the duration of the 5-year study; those enrolled earlier had more follow-up visits than those enrolled later. At each follow-up visit, IC/PBS symptoms were queried. We assessed the severity of “bladder pain, pressure, or discomfort” using a Likert scale (0, none to 10, as bad as you can imagine), and how often the pain was experienced. At the 18-month follow-up visit, immediately after these questions, the following was requested: “Tell me, in your own words, how you know that the bladder is the source of this pain,” and the verbatim responses were recorded. One investigator (J.W.W.) abstracted the responses and categorized them by the common findings. A “bladder” location was coded if the patient mentioned the lower abdominal or suprapubic region or some variant of “bladder” area as the site of the pain. Pain changes with the urinary cycle were categorized as pain that increased with filling, decreased with voiding, increased during voiding, or increased after voiding. Variants of urinary tract infection, because burning on urination is a prominent symptom, were categorized as a separate group in the pain that increased during voiding category. Variants of urge or urgency were coded as “urgency.” “Frequency” was coded if ⬎8 urinations per 24 hour period or a variant of “many” urinations was in the response. If the patient noted several reasons, they were coded as first mentioned, second, and so forth. “Do not know” included variants of “because that is what the doctor told me.”
RESULTS A total of 312 women (median age 44 years) with recent IC/PBS were enrolled and underwent the baseline interview at a mean of 9 months after onset of IC/PBS symptoms. Pain, urinary symptoms, and proportions with Hunner’s ulcer were characteristic of IC/PBS, and 96% of the patients had either received a written diagnosis of IC/PBS or medications commonly used for IC/PBS.6 At the 18-month follow-up period after the baseline interview, 210 patients were interviewed. Of the 210 patients, 31 reported no IC/PBS pain in the previous week and did not answer the open-ended question about “. . .how you know that the bladder is the source of this pain.” The remaining 179 responded as follows: 72 (40%) mentioned a single reason, 96 (54%) noted several reasons (range 2-4), and 11 (6%) responded “do not know” (Table 1). 310
Table 1. Reasons given for bladder considered source of pain (n ⫽ 179) Reason Stated
Total
Stated First
“Bladder” location Increased with filling Decreased with emptying With urgency With frequency Pain during urination “Like urinary tract infection” Increased after voiding Bladder spasms Pain in urethra Other urinary symptoms Nonurinary symptoms Do not know Total reasons
73 (41) 29 (16) 40 (22) 39 (22) 22 (12) 29 (16) 6 (3) 13 (7) 11 (6) 8 (4) 14 (8) 18 (8) 11 (6) 313
50 (28) 8 (4) 16 (9) 25 (14) 11 (6) 16 (9) 4 (2) 7 (4) 7 (4) 6 (3) 5 (3) 13 (7) 11 (6) 179 (100)
Data presented as number of reasons, with percentage of patients in parentheses.
Of the 179 patients, 73 (41%) stated that the location of pain was the reason they perceived the bladder as its source, and for 50 (28%), this was the first item mentioned. The examples included “exactly where the bladder is,” “I have pain between my lower abdomen and mons pubis,” “pressure in the abdomen,” “mostly location; just above the public bone.” A total of 60 women (34%) noted pain increasing with bladder filling and/or decreasing with bladder emptying (9 noted both; eg, “bladder discomfort just before urination, gets better after voiding”). A total of 56 (31%) stated the presence of urinary urgency (eg, “constant feeling of having to urinate”) and/or frequency (eg, “I have to go to the bathroom 20 times a day”) was the reason (5 noted both). Arising at night to urinate was not noted as a reason by any patient. Pain worsening during or after urination was cited as a rationale for associating it with the bladder for 42 respondents (23%). This group also included those who claimed pain during urination (n ⫽ 29). This was often described as “burning” (eg, “I get burning when I pee”); only 2 noted a location, 1 the bladder and 1 in the urethra. Another 6 patients noted the pain resembling that with a urinary tract infection. The last members of this group were those who described pain worsening after urination (eg, “Because after I urinate, my bladder throbs and feels swollen”; n ⫽ 13). A total of 30 patients (17%) reported 33 other urinary symptoms as reasons. Of these 30 women, 11 mentioned “spasms,” with some noting these occurring after urination; 8 noted urethral pain (without commenting on exacerbation during urination) as a reason for suspecting the bladder as the source of pain (eg, “my urethra feels like I have a stick in it”); and 14 noted a variety of other symptoms related to the urinary tract, including voiding only a few drops (n ⫽ 4), straining to urinate (n ⫽ 2), and otherwise undescribed difficulty in urinating (n ⫽ 2). Finally, 15 patients (8%) gave 18 descriptions that, at least in the absence of other knowledge, did not appear to UROLOGY 77 (2), 2011
focus attention on the urinary tract. These included worsening of pain with dietary items (n ⫽ 10) or during menses (n ⫽ 2), stress (n ⫽ 2), or sex (n ⫽ 1) and descriptions of pain as vaginal burning and similar to menstrual cramps or vaginal delivery (n ⫽ 1 each). However, only 4 patients (2%) noted such “nonurinary” symptoms without also mentioning ⱖ1 of the urinary symptoms previously mentioned. Subtracting these 4 patients and the 11 with “do not know” indicated that 164 (92%) of 179 women with IC/PBS used symptoms based on the bladder or lower urinary tract to “perceive” that their pain involved the bladder. The patients were categorized by their first stated reason into 6 groups: “bladder” location (n ⫽ 50), changes in pain with bladder filling/emptying (n ⫽ 24), urgency/frequency (n ⫽ 36), worsening pain during/after urination (n ⫽ 27), other urinary symptoms (n ⫽ 18), and do not know/nonurinary symptoms (n ⫽ 24). These mutually exclusive groups were not significantly different in mean age, racial distribution, or severity of pain, urgency, frequency, or nocturia at the 18-month follow-up interview.
COMMENT Of interest to us was that no reason for suspecting the bladder to be the source of pain predominated. Practical consolidation schemes still yielded 6-12 categories, and none had been put forth by a majority of patients (Table 1). Recently, preliminary work for a RAND (Santa Monica, CA) prevalence study of IC/PBS revealed difficulty in finding a single symptom-based definition of IC/PBS with both sufficient sensitivity and specificity to separate patients with IC/PBS from those with physiciandiagnosed overactive bladder, vulvodynia, or endometriosis.10 The investigators noted 3 possible reasons for the difficulty in disentangling these syndromes: “. . .the true overlap of symptoms across these conditions, and. . . the accuracy of measurement and clinical diagnoses of these conditions.” The symptoms of other syndromes do overlap those of IC/PBS. These include not only the pelvic conditions studied by RAND, but also others, such as irritable bowel syndrome, and systemic syndromes, such as fibromyalgia.7 To compound this confusion, many of these conditions with overlapping symptoms are diagnosed in the same patient. That is, vulvodynia, chronic pelvic pain, irritable bowel syndrome, and fibromyalgia are epidemiologically associated with IC/PBS.7,11 Another question is the accuracy of measurement of these conditions. It is unknown whether some of the overlapping symptoms might actually be sufficiently different to distinguish these syndromes. For instance, it is unknown whether the urgency experienced by those with overactive bladder differs from that experienced by those with IC/PBS. Also, it is unknown whether the pain associated with endometriosis is distinctive from that of IC/PBS. It is not known what convinces patients that a particular pain is not from their irritable bowel syndrome or fibromyalgia but rather “involves” the bladder. Thus, UROLOGY 77 (2), 2011
nuances of symptoms might allow the discrimination of these syndromes. This “splitting” would go against the trend of recent years of “lumping” symptoms.12 Such work has been begun for several of these symptoms.9,13-18 However, it that adequate symptom descriptions will not yield accurate clinical diagnoses. Clemens et al,19 referring to the urologic syndromes of IC/PBS, overactive bladder, benign prostatic hyperplasia, and chronic prostatitis/chronic pelvic pain syndrome, stated: “If symptoms overlap to a large degree, it would imply that the distinction among these various syndromes is rather arbitrary.” An extrapolation of this logic to the pelvic and systemic syndromes we have noted suggests that a similarity of symptoms—particularly when coupled with the comorbidity of these syndromes—might have nosologic implications; if boundaries cannot be identified between syndromes, are they different diseases?20,21 The present study had limitations. We studied only women, and these findings might not apply to men with IC/PBS. Although the participants were characteristic of published patients with IC/PBS, they might not be characteristic of the entire population of patients with IC/ PBS, some of whom seek care from urologists, others from gynecologists, and some who do not seek care at all. None of our patients were medically naive: an enrollment criterion was that they sought medical care for their symptoms and almost all had been prescribed medications commonly used for IC/PBS and/or had had the words “interstitial cystitis” written in their medical records. Thus, we were unable to distinguish a patient’s native insight from what was learned from a physician or other sources, such as the Internet. The patients who noted nonurinary symptoms characteristic of IC/PBS (eg, worsening with certain dietary items, menstruation) likely reflect knowledge acquired during medical framing of the disease. Thus, the findings might be an amalgam of what patients and their clinicians used to “perceive” that the bladder was the source of pain. We observed that none of the suggested definitions stated whether the patient or the clinician should determine that the pain is “associated with,” “related to,” or “perceived to be related to” the urinary bladder. The format of the present study was advantageous in that it allowed the patient to use her own words and hence set her own priorities about what to tell us. A disadvantage was that simply because a reason was not mentioned did not mean that it was not experienced. Symptoms are the heralds of a disease that prompt a patient to seek medical care. It then is the task of the patient and clinician to reveal a sufficient description of the symptoms to prompt an appropriate diagnosis of the disease. To the extent that the pain the patients “perceive” to be from the bladder is a characteristic of IC/PBS, it might be important to understand what sensory experiences patients are using to interpret that the pain involves the bladder. Open-ended descriptions followed, as necessary, by specific questions should include many of the topics we have dis311
cussed. Providing graphic drawings of the anterior, posterior, and perineal views of the human body might assist the patient in identifying their sites of pain.9 Asking whether the pain “gets worse, gets better, or stays the same” before, during, and after urination offers nonleading options to the patient.9 Our interviewers found that for urgency, the expression, “the compelling urge to urinate that is difficult to postpone” was well understood and could be used to complete a Likert scale.16 Additionally, although the focus on pain as a required symptom in this syndrome has increased, clinicians have recognized that over time pain might become less prominent in a proportion of patients with IC/PBS.22
CONCLUSIONS In our study, the patients with IC/PBS perceived “bladder” pain by its location, by changes with the urinary cycle, and in association with other urinary symptoms. To clarify the relationship of IC/PBS to other chronic pain syndromes, which could be comorbidities, these features of IC/PBS should be queried. References 1. Hanno P, Lin A, Nordling J, et al. Bladder pain syndrome committee of the international consultation on incontinence. Neurourol Urodyn. 2010;29:191-198. 2. Wein AJ, Hanno PM, Gillenwater JY. Interstitial cystitis: an introduction to the problem. In: Hanno PM, Staskin DR, Krane RJ, eds. Interstitial Cystitis. London: Springer-Verlag; 1990. 3. Abrams P, Cardozo L, Fall M, et al. The standardisation of terminology of lower urinary tract function: report from the Standardisation Sub-Committee of the International Continence Society. Neurourol Urodyn. 2002;21:167-178. 4. van de Merwe JP, Nordling J, Bouchelouche P, et al. Diagnostic criteria, classification, and nomenclature for painful bladder syndrome/interstitial cystitis: an ESSIC proposal. Eur Urol. 2008;53: 60-67. 5. Hanno PM. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome: AUA guideline. Presented at the Annual Meeting of the American Urological Association, May 2010, San Francisco, California. 6. Warren JW, Brown V, Jacobs S, et al. Urinary tract infection and inflammation at onset of interstitial cystitis/painful bladder syndrome. Urology. 2008;71:1085-1090.
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7. Warren JW, Howard FM, Cross RK, et al. Antecedent nonbladder syndromes in case-control study of interstitial cystitis/painful bladder syndrome. Urology. 2009;73:52-57. 8. Abrams P, Andersson KE, Birder L, et al. Fourth International Consultation on incontinence recommendations of the International Scientific Committee: evaluation and treatment of urinary incontinence, pelvic organ prolapse, and fecal incontinence. Neurourol Urodyn. 2010;29:213-240. 9. Warren JW, Langenberg P, Greenberg P, et al. Sites of pain from interstitial cystitis/painful bladder syndrome. J Urol. 2008;180: 1373-1377. 10. Berry SH, Bogart LM, Pham C, et al. Development, validation and testing of an epidemiological case definition of interstitial cystitis/ painful bladder syndrome. J Urol. 2010;183:1848-1852. 11. Alagiri M, Chottiner S, Ratner V, et al. Interstitial cystitis: unexplained associations with other chronic disease and pain syndromes. Urology. 1997;49(suppl):52-57. 12. Barry MJ, Fowler FJ Jr, O’Leary MP, et al. The American Urological Association symptom index for benign prostatic hyperplasia: the Measurement Committee of the American Urological Association. J Urol. 1992;148:1549-1557, 1564. 13. FitzGerald MP, Kenton KS, Brubaker L. Localization of the urge to void in patients with painful bladder syndrome. Neurourol Urodyn. 2005;24:633-637. 14. Abrams P, Hanno P, Wein A. Overactive bladder and painful bladder syndrome: there need not be confusion. Neurourol Urodyn. 2005;24:149-150. 15. Diggs C, Meyer WA, Langenberg P, et al. Assessing urgency in interstitial cystitis/painful bladder syndrome. Urology. 2007;69:210214. 16. Greenberg P, Brown J, Yates T, et al. Voiding urges perceived by patients with interstitial cystitis/painful bladder syndrome. Neurourol Urodyn. 2008;27:287-290. 17. Tikkinen KA, Auvinen A, Johnson TM Jr, et al. A systematic evaluation of factors associated with nocturia—the populationbased FINNO study. Am J Epidemiol. 2009;170:361-368. 18. Klingler HC, Heidler H, Madersbacher H, et al. Nocturia: an Austrian study on the multifactorial etiology of this symptom. Neurourol Urodyn. 2009;28:427-431. 19. Clemens JQ, Markossian TW, Meenan RT, et al. Overlap of voiding symptoms, storage symptoms and pain in men and women. J Urol. 2007;178(4 Pt. 1):1354-1358. 20. Kendell R, Jablensky A. Distinguishing between the validity and utility of psychiatric diagnoses. Am J Psychiatry. 2003;160:4-12. 21. Warren JW. Update on interstitial cystitis: still a bladder disease? Curr Bladder Dysfunc Rep. 2009;4:109. 22. Warren JW, Greenberg P, Diggs C, et al. A prospective early history of incident interstitial cystitis/painful bladder syndrome. J Urol. In press.
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