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Revised: Dec 15, 2001

ICN Editorial - A Critical Need : Part Two

(By Jill Osborne, ICN Founder) In my last editorial, I discussed the need for new "clinical" diagnostic criteria for IC (1). My concern was that it excluded groups of patients, particularly children with IC, and relied on the use of hydrodistention to confirm the diagnosis. A new study published in the December Journal of Urology offers yet another reason for the development of new clinical criteria and highlights many of the misdiagnoses that IC patients have received while searching for a proper diagnosis.

"How Do Patients with IC Present" by Driscoll and Teichman (2) suggests that the current diagnostic criteria are so strict that mild IC patients, for whom early intervention could be vital, are excluded from diagnosis because they do not have all of the symptoms typically associated with IC (frequency/urgency, nocturia and pain). Their study demonstrated that only 7% of 45 patients studied experienced simultaneous symptoms. 89% of the patients initially experienced only one symptom, such as frequency/urgency or pain.

Their study also highlighted a pattern of previous diagnosis that shows how difficult it can be for patients to receive an accurate IC diagnosis. Nineteen out of the 45 patients studied were previously diagnosed with a UTI, yet only one of those 19 had a positive urine culture in their records. 13 had negative UTI and four had no record of urine cultures.

A previous gynecological diagnosis was made in 14 out of 45 patients. Eleven of these patients had undergone hysterectomy, yet operative records in eight found nothing conclusive. These patients were labeled with a generic non specific pelvic pain. Earlier this year, Lowell Parsons MD (UCSD Medical Center) published the results of a study that measured the prevalence of IC occurring in patients who were visiting their gynecologists for pelvic pain (3,4,5). He found that 75% of these patients had urological symptoms when screened and that 85% had positive potassium sensitivity testing. Parsons strongly suggests that "interstitial cystitis is not a rare cause of pelvic pain but the most common one" and that it should be ruled out first.

Men face similar difficulties. In the Driscoll and Teichman study, they found that two men were diagnosed with prostatitis, yet they had no white blood cells or evidence of infection in their expressed prostatic fluid. Similarly, a number of patients (6/45) had a previous diagnosis of a urethral condition, such as urethral stenosis, urethral syndrome, urethrotrigonitis, urethritis and chronic urethritis. Yet, again, there was no documentation in patient records to support the diagnosis.

We contend that patients struggle with misdiagnosis because a wide range of medical care providers (particularly gynecologists, primary care, etc.) do not associate frequency/urgency or pain with early IC. As a result, patients often receive vague, confusing diagnoses, such as recurring urethral syndrome, prostatitis, urethritis, trigonitis, frequency/urgency syndrome, overactive bladder and the dreaded yet predictable sensitive bladder. One lesson that patients should take from this is that a diagnosis of UTI should be supported by a positive urine culture and, for the heck of it, ask for the name of the infectious organism so that you know what type of infection that you have.

Ultimately, the collective challenge for patients and providers alike is education, particularly of the full range of symptoms of IC as well as the many treatment and self help options available. Patients should not have to wait five years for a diagnosis, nor should they have to wait for the disease to worsen, before they receive treatment that could reduce the impact of IC.

(1) Osborne, J. A Critical Need: Revising the Diagnostic Criteria of IC. ICN Editorial 10/21
(2) Driscoll, A., Teichman, J., How Do Patients With Interstitial Cystitis Present. Journal of Urology 2001;166:2118-2120
(3) Parsons, L. The High Prevalence of Interstitial Cystitis in Gynecologic Pelvic Pain Patients: How to Diagnose and Treat. IPPS Newsletter 2001, 05/31/01
(4) Parsons, L. Gynecologic presentation of interstitial cystitis as detected by intravesical potassium sensitivity. Obstet Gynecol 2001 Jul;98(1):127-32)
(5) Parsons, L. ICN Meet the IC Expert Guest Lecture Series, October 2001