Volume 18, June 2026, 102335
Missed diagnoses are identified in the majority of patients referred for subspecialty evaluation of interstitial cystitis
Shreya Patel a, Rachel Vancavage a, Oyenike Ilaka b, Sohil Dharia a, Talia Denis a, Charles Argoff c, Elise De a
Abstract
Introduction
Interstitial cystitis/bladder pain syndrome (IC/BPS) is technically a diagnosis of exclusion. Previous studies have reported, for example, bladder cancer in patients initially misdiagnosed with IC/BPS. The current aim is to explore the frequency of underlying primary diagnoses in new patients referred with existing diagnoses of IC/BPS.
Methods
This is an observational cohort study of new patients who presented with an existing diagnosis of IC/BPS to a subspecialty urology urogynecology and reconstructive pelvic surgery (URPS) clinic from January 1, 2022 to March 1, 2024. IC/BPS was defined as present at initial intake if the patient reported the diagnosis, if the ICD-10 code 30.1, 20.10, 30.11 had been previously coded, or if IC/BPS-specific treatments were documented (e.g. pentosan polysulfate). Data on individualized work-up were recorded. The primary outcome was a final diagnosis of interstitial cystitis versus reclassification.
Results
Of 50 patients carrying a diagnosis of IC/BPS at initial evaluation, 24% (n = 12) retained the diagnosis, while 76% (n = 38) were reclassified. These included 12 (32%) with small fiber neuropathy, 9 (24%) with bladder neck obstruction, 5 (13%) with peripheral neuropathy other than SFN via EMG (including 1 with large fiber neuropathy, 1 with diabetic neuropathy, and 3 unspecified), and 2 (5%) with symptomatic Tarlov cyst, 2 (5%) with severe lumbar spinal stenosis with underactive bladder, 2 (5%) with metabolically relevant MTHFR gene mutation, 2 (5%) upper motor neuron bladder with severe VUR and one each of post-chemotherapy neuropathy, stone in the distal ureter, atonic bladder and straightforward prostatic obstruction.
Conclusions
The majority (76%) of patients referred for subspecialty pelvic pain evaluation carrying a history of IC/BPS were found to have an alternate underlying physiologic diagnosis. Detailed history, review of systems, and targeted reevaluation can help distinguish IC/BPS from identifiable pathology.
