The Snowflake Hypothesis
When Dan Shoskes and colleagues in the newly formed The Phenotypic Management* of Pelvic Pain Research Network released their journal article (1) last year that broke IC into subtypes (phenotypes), we entered a new, dynamic era for IC diagnosis and treatment. Their new proposed system assesses the whole patient, from bladder to pelvic floor muscles to related conditions. It allows for customized treatment plans and, most of all, it validates those patients who have long complained of more than just bladder symptoms. Patients may have one or more of any of six subsets.
(1) the presence of urinary symptoms (frequency, urgency, pressure, pain).
(2)*the presence of anxiety or depression
(3) the presence of organ damage (i.e. Hunner's Ulcers or glomerulations)
(4) the presence of infection
(5) the presence of neurologically related conditions (i.e. IBS, Fibromyalgia)
(6) the presence of pelvic floor muscle dysfunction.
Shoskes and colleagues suggest, I think appropriately, that IC is so individualized that it is almost impossible to come up with a standardized treatment protocol that could apply to everyone. It also explains why several clinical trials have had less than stellar results because they haven't been able to direct the correct patients to the correct treatments for their specific conditions. They compare IC patients to snowflakes, none identical to the other and each with their own issues.
At this years AUA meeting, Shoskes & company presented compelling evidence that supports their approach.(2) In a study of 90 chronic prostatitis and 100 IC patients, their research found important similarities and differences between IC and prostatitis patients.
100% of IC patients had urinary symptoms while only 52% of prostatitis patients experienced frequency, urgency, etc. 34% of both the IC and prostatitis patients struggled with anxiety and depression. 61% of prostatitis and 96% of IC patients had visible organ damage. 37% of prostatitis and 45% of IC patients struggled with other related conditions such as IBS or fibromyalgia. Surprisingly, men with prostatitis had more pelvic floor muscle dysfunction (53% to 48%) than those diagnosed with IC.* Evidence of infection was found in a very small subset of both patients (16% to 38%).
They were also able to determine that the more subtypes a patient fit into, the more severe their symptoms were. Age was not a factor.
So, what does this mean to the typical IC patient. It means that you're not alone. It means that you are not imagining having other problems, like IBS. It clearly demonstrates that a significant number of IC patients may require physical therapy to help restore their pelvic floor muscle tone. It doesn't say that IC causes anxiety disorder... but it does say that some patients struggle with anxiety and should take the time to get care for that so you don't suffer in silence at home. There are great anxiety management available at local community hospitals and health care centers around the world.
But the real impact of this new system is the diagnosis of new patients. They won't be ignored. They won't be disregarded. They will, finally, receive a "whole body" assessment and, better yet, a more customized treatment plan to meet their personal needs. This is a good thing. We're excited! Well done guys!
(1) -
http://www.ic-network.com/newsletters/ezine0908.html
(2) - http://www.abstractsonline.com/viewer/viewAbstractPrintFriendly.asp?CKey={6CC6298C-45C8-4D15-9F4D-38DB0CDB6624}&SKey={0553B1D7-3462-446C-AC94-2E6346711536}&MKey={1F701420-DF53-4589-8033-E5D0A34BB9D6}&AKey={0CEBCA69-DE5E-4928-AF08-EF9CC2A12366}
- Jill Osborne, ICN President & Founder
