Interstitial Cystitis Advice

A recent convention of medical professionals (doctors, researchers, etc) held in Austria this past June (2005) has looked further into the “ diagnostic criteria for IC”. Organized by the ESSIC (the European Society for the Study of Interstitial Cystitis) a members only group (basically you have to be a medical professional to qualify) almost a full day of the three day event was devoted to disusing the criteria behind IC and Painful Bladder Syndrome diagnosis.

As many of us know the criteria for such is very, very diverse. While some symptoms of IC are widespread others are seen in only a handful of cases, and some cannot be seen at all (yet) until internal diagnostic tests are carried out inside of the patient’s bladder. For many years the NIDDK’s criteria has been seen as most official mark by which to judge IC and PBS by. However the group veered slightly from the conventional NIDDK description of IC and concluded their talks by saying that:

“During the final discussion, it was decided that ESSIC should for the time being accept and support the ICS definition of PBS (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 tract infection or other obvious pathology). ESSIC decided that the last sentence does not include pathology typical of interstitial cystitis. The diagnosis of interstitial cystitis could not be made unless typical cystoscopic (glomerulations, Hunner’s vulnus/ulcers) or morphological (mononuclear inflammatory cells including mast cell infiltration and granulation tissue) were demonstrated. Since the cystoscopic and morphological changes in the bladder are changeable over time, a patient with typical symptoms but without objective findings should be reinvestigated after a period of time. Until cystoscopic and/or morphological findings are demonstrated, the patient should be diagnosed as having PBS.”

Basically the conclusion of this paragraph states something very important, it says in a round about way, that between the time when a patient first presents their “IC-like” symptoms to their doctor/urologist/etc and the time when they (the patient) undergoes IC diagnostic procedures such as a cystoscopy, the patient should not be without a name for his or her symptoms. And that if IC symptoms persists the patient should be tested again (assuming that the bladder did not appear to show internal signs of IC) for IC. Although another approach would be to start the patient on IC medication(s) if their symptoms are those seen in the majority of IC cases, and see how the patient’s bladder responds to IC drugs.

While this might not seem all that important, if you are still trying to get to the end diagnosis, and for those of us who spent many, many months or even years trying to get an IC diagnosis (or if you were not aware of IC prior to your diagnosis, a name for your symptoms) it is a lot better than patients simply being left in symptom limbo. Or as some people know first hand being told things such as “it must be a UTI (despite the fact that urine tests come back as healthy)” or “this is nothing (drink some water, have a baby, it’s all stress, etc)”.

Thankfully more and more people are not having to be subjected to these sorts of backwards and outdated views on IC and are being helped by their physicians in order to reach an IC diagnosis, but many people still have to see a lot of doctors and wait far, far too long before they are diagnosed. If a readily known title (PBS) was applied to the symptoms from day one (assuming that other things like a UTI had been ruled out) it could prove to be a stepping-stone along the path to a final IC diagnosis.

Confusion arises though, as PBS is sometimes another word for IC all together (another term for IC is the lesser known “frequency-urgency-dysuria syndrome”), or a word used for symptoms similar to IC but which after cystoscopy (or similar testing) do not show any concrete internal signs of being IC.A helpful look at what PBS is often thought to be can be found on the Painful Bladder Syndrome Organization’s website.

And again this in itself can be confusing as some feel that IC and PBS are in the end the exact same medical condition, albeit manifested with slightly different physical finding. In March of 2005 ICadvice looked at this exact question in the article IC and Painful Bladder Syndrome, one in the same? .

The conclusions reached by the ESSIC conference are very interesting. They show an openness amongst IC professionals to expand and re-evaluate the diagnostic findings for IC and PBS, as well as helping those without a name for their symptom to perhaps more easily be granted one. At this stage though, only time will tell how universally recognized their findings will become.

Information resources:

European Society for the Study of IC/PBS
European Society for the Study of IC/PBS (Home page)
National Institute of Diabetes and Digestive and Kidney Diseases