Editor: Jane Meijlink
Last Updated: March 2018
Current definition (1)
Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). Persistent or recurrent chronic pelvic pain, pressure or discomfort perceived to be related to the urinary bladder accompanied by at least one other urinary symptom such as an urgent need to void or urinary frequency. Diagnosed in the absence of any identifiable pathology which could explain these symptoms.
Interstitial Cystitis/Hunner lesion. Interstitial cystitis with Hunner lesion has the same symptoms as IC/BPS. Identified on the basis of cystoscopic findings.
Hypersensitive Bladder (HSB). Hypersensitive bladder symptoms (increased bladder sensation, usually associated with increased urinary frequency and night, with or without bladder pain) in the absence of pathology explaining the symptoms. (2)
Urgency a compelling need to urinate, due to pain or an unpleasant sensation, that is difficult to defer
Painful bladder syndrome is the complaint of suprapubic pain related to bladder filling, accompanied by other symptoms such as increased daytime and night-time frequency, in the absence of proven urinary infection or other obvious pathology. (2)
FOOTNOTE 9 - The ICS believes this to be a preferable term to “interstitial cystitis”. Interstitial cystitis is a specific diagnosis and requires confirmation by typical cystoscopic and histological features. In the investigation of bladder pain, it may be necessary to exclude conditions such as carcinoma in situ and endometriosis.
Other CPPS and IC/BPS standards and guidelines include:
It was the ICS itself which triggered the controversy in 2002 when it changed the name from interstitial cystitis to painful bladder syndrome, thereby inferring that patients had to have pain and consequently also inferring that those who did not have pain – or not what the patients themselves identified as pain – should be excluded.
Furthermore, changing from the disease IC to the syndrome PBS (and later BPS) had (and still has) a disastrous impact on the patients with regard to non-reimbursement of treatment, with the result that vast numbers of patients now have no affordable access to the treatment they need.
Bearing in mind that in the same 2002 ICS LUTS standardisation document the term urgency was also changed with the addition of “sudden” to make it only applicable to overactive bladder/urge incontinence, one can only conclude that all of these changes were aimed at facilitating the smooth marketing of OAB by ensuring that there was no overlap between OAB and IC and that the term urgency could be used exclusively for OAB, despite the fact that urgency has been recorded as a key symptom of IC for almost two centuries, while OAB was only recently invented. (7) It is not unreasonable to think that the ICS now has a moral duty to help put things right for the sake of the patients.
With all patients being bundled together as one “syndrome”, with no subtyping, study data has been unreliable and even meaningless. This is further exacerbated by the fact that there is still no international consensus on nomenclature, terminology and definitions nor on diagnostic criteria. This is damaging for research, data sharing and comparing and ultimately for the patient and treatment since the evidence from drug studies is erratic and inconsistent.
Prevalence figures are consequently meaningless with the disease considered rare in some countries and common in others.
Nomenclature and definitions continue to be a major problem. There are not only multiple different names and combinations, but definitions of each of these names may be quite different in different guidelines.
The Japanese and East Asian research groups revived the old ICS term hypersensitive bladder, also being used by research groups in France, to use as an all-encompassing term before further subtyping. Hypersensitive bladder (HSB) is pain, discomfort or pressure (i.e. with or without pain) usually associated with increased urinary frequency day and night and/or an urgent need to void in the absence of obvious pathology. This term is increasingly being used worldwide.
It is widely felt that Hunner lesion is a distinct disease with characteristic cystoscopic findings and should not be combined with non-lesion disease, certainly not in studies. Many experts in the IC/BPS/HSB world believe that Hunner lesion should now be cut off completely and made a separate disease, while others prefer to make it a phenotype.
An atlas of cystoscopy is urgently needed since many urologists still fail to diagnose lesions since they are unsure of what they are looking for.
Phenotyping is high on the list of priorities. It may play a key role in improving treatment and research. An effective method is still being sought. However, the most important priority right now must be to achieve international agreement on terminology, definitions and diagnostic criteria. Everything else depends on this.
Doggweiler R, Whitmore KE, Meijlink JM, Drake MJ, Frawley H, Nordling J, Hanno P, Fraser MO, Homma Y, Garrido G, Gomes MJ, Elneil S, van de Merwe JP, Lin ATL, Tomoe H. A standard for terminology in chronic pelvic pain syndromes: A report from the chronic pelvic pain working group of the international continence society. Neurourol Urodyn. 2017 Apr;36(4):984-1008. doi: 10.1002/nau.23072. Epub 2016 Aug 26.
Homma Y, Ueda T, Tomoe H, Lin AT, Kuo HC, Lee MH, Oh SJ, Kim JC, Lee KS. Clinical guidelines for interstitial cystitis and hypersensitive bladder updated in 2015. Int J Urol. 2016 Jul;23(7):542-9. doi: 10.1111/iju.13118. Epub 2016 May 24.
Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmsten U, van Kerrebroeck P, Victor A, Wein A; Standardisation Sub-committee of the International Continence Society. The standardisation of terminology of lower urinary tract function: report from the Standardisation Sub-committee of the International Continence Society. Neurourol Urodyn. 2002;21(2):167-78.
Engeler D, Baranowski AP, Borovicka J, Cottrell AM, Dinis Oliveira P, Elneil S, Hughes J, Messelink EJ, Williams AC de C. EAU Guidelines on Chronic Pelvic Pain. EAU Guidelines Office. 2018.
Available online (EAU members) at:
Van de Merwe JP, Nordling J, et al. Diagnostic Criteria, Classification, and Nomenclature for Painful Bladder Syndrome/Interstitial Cystitis: An ESSIC Proposal. Eur Urol 2008;53:60-7.
Moldwin RM. Urological and Gynaecological Chronic Pelvic Pain. chapter in Incontinence. 6th Edition 2017. ICUD. Abrams P, Cardozo L, Wagg A, Wein A. Springer 2017.
Meijlink JM. Interstitial cystitis and the painful bladder: a brief history of nomenclature, definitions and criteria. Int J Urol. 2014 Apr;21 Suppl 1:4-12. doi: 10.1111/iju.12307.
Meijlink JM. Patient-centred standardization in interstitial cystitis/bladder pain syndrome—a PLEA. Transl Androl Urol 2015;4(5):499-505.
Books for further reading
Bladder Pain Syndrome – an Evolution. Hanno PM, Nordling J, Staskin DR, Wein AJ, Wyndaele JJ (Editors). Springer; 2018.
Bladder Pain Syndrome, A Guide for Clinicians. Nordling J, Wyndaele JJ, van de Merwe JP, Bouchelouche P, Cervigni M, Fall M (Editors.) Springer 2013.