In recent decades, Interstitial Cystitis (IC) has experienced turbulent times with numerous changes in nomenclature, definitions and classification, often based on theories, ideologies and politics rather than on real patients and their real symptoms, and has been increasingly dominated by pain and psychology theories rather than down-to-earth urology. This has caused worldwide confusion and disagreement for many years. Over 20 years of a focus on theories revolving around pelvic pain and central sensitization have done much to sideline the importance of both the bladder organ itself and the characteristic IC/BPS urinary symptoms which are only now being slowly reinstated. Definitions during this period have been confusing, with wording open to misinterpretation and omission of key symptoms such as painful urgency. Incorrect claims that inflammation was only to be found in Hunner lesion patients and that non-lesion was never inflammatory may have led both research and clinical treatment in wrong directions. Failure to exclude confusable diseases adequately has resulted in non-bladder pelvic and gynecological disorders being misdiagnosed as IC/BPS and even considered to be subtypes or phenotypes. This has been exacerbated by a reluctance to perform cystoscopy and to separate Hunner lesion disease from non-lesion. What was once a bladder disease has become a vague pain syndrome. The question is: have we learned from past mistakes and where do we go from here? Is it possible to achieve internationally accepted terminology and definitions to describe the disease as it truly is, and should every endeavor now be made to achieve international consensus on research criteria?
International journal of urology : official journal of the Japanese Urological Association. 2026 May [Epub]
Jane Meijlink
International Painful Bladder Foundation, Rotterdam, the Netherlands.