Commentary on Sant Chapter: 30 Years on!


• 1978 Non-ulcer IC described

• 1984 Formation of Interstitial Cystitis Association (ICA) patient advocacy group

• 1987 First urology Journal Supplement devote to IC

• 1990 First Conference Proceedings book on IC (Springer–Verlag)

• 1997 First IC textbook (Lippincott)

• FDA drug approvals

– Intravesical DMSO 1978

– Oral Pentosanpolysulfate (Elmiron) 1996





14.2 What We Got Right?


Despite the current demonstrable unmet medical patient need for new therapies there are many issues that the field got right. IC is no longer regarded as an orphan disease as it was in 1987 and multiple studies have shown that it is not uncommon in men—frequently misdiagnosed as prostatodynia and/or non-bacterial prostatitis.

The global awareness of the disease has improved significantly with ongoing research and patient education activities extending from the US to Europe, South America, Asia- Pacific, India and South Africa. There have been special journal issues on IC published with the most recent the October and December issues of Translational Andrology and Urology (TAU) in 2015.


14.3 What We Got Wrong?


In 1987 the majority opinion among urologists was that diagnosis required a cystoscopy under anesthesia (“glomerulations”, Hunner’s ulcers) and biopsy showing pathologic inflammation (“cystitis”) of the bladder wall. Currently IC is a diagnosis of exclusion of known bladder diseases (bacterial infection, cancer, carcinoma-in-situ) and based on a symptom complex similar to that of the overactive bladder syndrome (OAB). Recently the distinction between ulcer (Hunner) and non-ulcer forms of the disease have gained some cachet as it may well be that both forms have distinct pathophysiology and treatments?

The diagnostic criteria for research studies of IC defined at the 1987 NIH Workshop [2] has been confined to the dustbin of history and has been replaced by a symptom-based definition and exclusion of known bladder disease.

Another paradigm shift from 30 years ago has to do with pathophysiology and disease progression—namely, is IC a primary bladder disease or a pelvic floor disease? Originally it was thought that IC starts in the bladder (altered bladder wall permeability) leading to bladder wall inflammation (“interstitial cystitis”) and subsequent up-regulation of the sensory nerves in the sub-urothelium, pelvic floor, pelvic organs (bowel, female genital organs) and lower spinal cord. Current thoughts on pathobiology focus on IC as a component of a pelvic pain syndrome and hence the additional definitions of Bladder Pain Syndrome (BPS), Painful Bladder Syndrome (PBS) and Hypersensitive Bladder (HSB) [3].


14.4 What’s in a Name—Nomenclature “Redux”?


IC has been defined and redefined by multiple regional organizations (US, Europe, Asia Pacific) and no consensus terminology has emerged. The confusing stew of definitions—Interstitial Cystitis (IC), Painful Bladder Syndrome (PBS), Bladder Pain Syndrome (BPS) and Hypersensitive Bladder (HSB) has resulted in a lack of uniformity of disease definition and a degree of confusion for clinicians, researchers, patients and reimbursement authorities.

This definitional “over-reach” is regrettable and confusing for patients, reimbursement entities, epidemiologists and healthcare systems (see Table 14.2).


Table 14.2
A personal wish list for the next 5–10 years

















• Definitional parsimony with a single disease name

• Increased human studies (symptoms, tissue etc.)

• Application of new genomic/precision medicine tools

• Better understanding of disease pathophysiology

• Is IC a primary bladder or pelvic disease?

• Is ulcer IC different from non-ulcer IC?

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Jan 29, 2018 | Posted by in UROLOGY | Comments Off on Commentary on Sant Chapter: 30 Years on!

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