Stats on CPPS

[DavidinLA]

Part of the frustration of this condition is all the conflicting information out there. One area where I see this most often is in the statitics dealing with the occurance of the disease. I have seen studies that report as many as 50% of men will deal with CP/CPPS at sometime durring their lives or that 15% of men have this condition at any given time. More conservative reports state tha the percentage of the male population suffering from this condtion is more likely in the range of 1% - 8%. If we go very conservative and assume only 2% of men have CPPS, that is still a very large number of men, which leads me to ask why is there so little awaremess amd why do we not hear more about this condition when other diseases with much lower occurance get far more attention?

Also I've seen stats that CP accounts for 1% of all doctor visits in the U.S, but today I just noticed on the NIH website it says that only 5 in 10,000 office visits are for CNP. This would seem to indicate the this disease is much more rare than I thought previously.

Anybody have any thoughts on this?

[londoner]

I've never met anyone else with this condition. So far as I know..

[webslave]

This issue has been discussed many, many times.

There is a confusion both in discussion and research between the terrible pain of true chronic prostatitis / chronic pelvic pain syndrome and (a) the passing discomfort some men feel in their groins for a variety of diverse reasons and (b) the usual temporary prostatitis many men experience, all of which leads me to believe that the 50% figure is simply ridiculous, and that the 8% or 9% figure may be inflated. It's time we unbundled true chronic prostatitis / chronic pelvic pain syndrome patients from the many men who have had "prostatitis" at some point in their lives.

My guess: the true incidence is 0.5 - 3.0%, similar to what is called "IC" in females, although most recent studies put the incidence of male chronic pelvic pain at around 8%.

[DavidinLA]

I've never met anyone else with this condition. So far as I know..

I've met one person who said he had it and got rid of it using anti-biotics. Everyone else with whom I've discussed it has never even heard of the condition.

[DavidinLA]

This issue has been discussed many, many times.

There is a confusion both in discussion and research between the terrible pain of true chronic prostatitis / chronic pelvic pain syndrome and (a) the passing discomfort some men feel in their groins for a variety of diverse reasons and (b) the usual temporary prostatitis many men experience, all of which leads me to believe that the 50% figure is simply ridiculous, and that the 8% or 9% figure may be inflated. It's time we unbundled true chronic prostatitis / chronic pelvic pain syndrome patients from the many men who have had "prostatitis" at some point in their lives.

My guess: the true incidence is 0.5 - 3.0%, similar to what is called "IC" in females, although most recent studies put the incidence of male chronic pelvic pain at around 8%.

Even if it's 1%, I cannot understand why we do not hear more about it. This awful condition that has destroyed many men's live - many of them in their prime - has got to be more understood. And as long as public knowledge of this condition remains as low as it is, it's going to leave a great void for quacks like the felicianos to occupy.

After a year this, I'm not sure what to believe anymore. I'm wondering if I have some nerve damage that has not yet been detected.

[Viking]

I have also heard of one person who suffered from CPPS. The dentist my mom used to work for. From what I understand he has suffered since his days at dental school and he is now close to 50 years old. I am not sure if he has received any type of treatment or how bad he has struggled with his condition.

I think part of the reason why we have not heard too much about this condition, is the fact that the pain refers to the pelvic region, which I guess has been something people don`t like to talk about. I know that it is a lot easier to say that you have a painful shoulder than penile pain.

I hope that this disease will get more attention though. Even if it only affects a small percentage of men, it is still a hell of a lot of men out there who demand action from the medical community.

[damien6]

Hi,

I'm dusting off an old topic here. On the question of how well this thing is know about. None of the inital Dr's I went to, complaining of pain in the penis/pelvis region knew anything about it. That INCLUDES the sexual health clinic that I virtually camped out in for months. Not only that nobody referred me to a Uro or even thought to send me to a Urologist even though I went/was sent to several other specialists, and I was only referred to one when I developed an actual measurable urethral infection. The Uro said prostatitis the moment I described the symptoms and I couldn't believe that there was an actual thing that people new anything about. Latter I went to a GP and mentioned it, he knew what Prostatitis was too and we had a conversation about it, I was flabbergasted.

I'm not trying to whinge here but I guess I'm pissed at (certain) Dr's and envious of the guys who had a correct diagnosis early on so they can get on with things. So with that in mind either there are idiot Dr's in Australia (no prejudice please haha, and I live in a substantial city mind you) or perhaps this thing is not SO common. How's that for anecdotal rubbish evidence!

To top it off I found out recently that my mother had some sort of cystitis for a while but she never told me about it. Just get on with work and it will go away on its own they said, don't make excuses blah (mind you hers did go away). I want to shoot someone, incredible. (Ok bad timing on that last comment).

End result I guess I'm suspicious of Dr's lol .

Good luck,

Damien

[webslave]

Uros in Australia are mostly bottom of the barrel. Period. Especially the old ones, trained in the 1950s, 60s and 70s. I know that from personal experience in the 1990s.

Nowadays I avoid doctors over about 45 yrs.

[damien6]

Haha, thats a good one.

Damien

[DavidinLA]

Uros in Australia are mostly bottom of the barrel. Period. Especially the old ones, trained in the 1950s, 60s and 70s. I know that from personal experience in the 1990s.

Nowadays I avoid doctors over about 45 yrs.

Though I think age may play some part, I think it is more a function of the individual doctor's drive to keep up to date with the latest research. Two previous UROs of mine (both under 45) were quick to identify the condition as CP/CPPS, but were completely clueless on any recomendations. I understand that they do not have the financial incentives to see patients like us, but they could at least recomend AHIP, phytotherapy, etc. and know the studies that give some support to these treatments.

Remember -- doctors Anderson, Shoskes, and Schaefer are all over 45, but are all dedicated to researching this condition.

[damien6]

Hi,

My Uro gave me a smirk when I said I was going to look up stuff on the internet. Went for a second opinion of course (it takes months to get an appointment here) but my reffering GP said he'd be old school and not very helpful and he wasn't.

I've read about all these various treatments everyone has tried, not to mention books, nothing like that would be forthcoming from the guys I've seen. Personally I don't think its financial because these guys see plenty of patients and the rooms are always full, I just think they only think in black and white and don't use imagination. I'm sure when there is a clear cut cure they'll recommend that but till then their attitude is chill out, suck it up, wait out. Wait a minute I might have misunderstood your point.

Not sure I have the energy at this very moment to go through more Doctors for cures and things but I'm sure I will in the fullness. Same goes for readings can't open a book today but hope to soon.

Thanks, Damien

[webslave]

Uros and GPs are mostly useful for ruling out other stuff, an important task in itself, and perhaps prescribing alpha-blockers, antihistamines, opioids, benzos etc. Other than that, they're a waste of time and money for this patient group.

[damien6]

Ok thanks

[GP2]

Discussing why some men get small bouts if prostatitus and for some it becomes chronic I do beleive that unfortunately there's an element of luck involved. In other words if you get an inititial bout of Prostatitus and can get it quickly diagnosed and stop worrying about it then you are much more likely to have it not become full blown as it has for most of us.

Oh well!

[damien6]

Hi,

This is not on topic but its wierd how you can feel the muscles contract when you get anxiety/fear and contract when you have pleasure/security. Shows how mean people can be a health hazard.

Damien