Disease progression

N.B. there is very little scientific data and tons of anecdotal. The following is mainly based on personal recollection and anecdotal data from websites. It is very sketchy. There is notable personal variation in pain experience and symptom intensity.

The disease/condition develops over many years. Initial symptoms are diffuse and mainly concern dripping progressing to obviously split stream (but most likely muscular pain has preceded that). At some point back pain and occasional perineal spasms start occurring. Unclear if the back pain and spasms precede dripping or developes during or even after.

In addition to the above vague problems with “penile sensitivity” start occurring and slowly semen/ejaculate start changing appearance. Parallel to this bouts of fatigue and malaise occur with increasing frequency and usually during winter with possibly a late winter early spring peak. Spring does also see an increase in depression-like symptoms. Palpitations do also occur but have no obvious pattern. Painful and/or uncoordinated (early and/or unexpected) ejaculation and “discoloring” of glans seems to be some sort of “end stage” problem.

Cold and freezing seems to precipitate spells of dysuria, but initiation of really bothersome dysuria and frequency seem to need a precipitating event. It seems that many sufferers seek medical attention at this point. Thus explaining the focus on urological causes.

Full blown CPPS tends to persist “unabated” for years, while milder forms tend to resolve with a few years. (In small study by Nickel symptoms resolved within a year in 38% of the subjects.) Or at least get manageable.

There may be a hereditary component!

A flare may look like this: dripping and nocturia begins, then back pain and some events of short inexplicable bursts of irritation and anger occur (hours), after these longer periods (days) of listlessness follow and finally palpitations occasionally occur. During the flare intestinal motility and libido diminishes and a progressive feeling of tiredness and fatigue develops. Micturition intervals decrease. Pain may occur during micturition and intercourse. Back pain is relieved by micturition. Flare ends pretty abruptly. Duration may be 3-4 weeks.

There is a collection of patient stories on this page: http://home.swipnet.se/isop/fallbeskrivningar.htm. The numbered links lead to english text.

Andra bloggar om CPPS, kroniskt bäckenbottensmärtsyndrom, kronisk abakteriell prostatit, NIHIIIb, ISOP