Important Question: How many sufferers?

[darin]

Hi,

I've posted a few times here, but not much recently. My problem is mostly frequency/urgency, but that's improved somewhat after I've been seeing the PT Marilyn Freedman and the doctor Robort Moldwin, in NY.

My question is: does anyone know how many people in the US (or around the world) suffer from this problem?

I ask because I've been approached by a big glossy magazine, which wants me to write an article for them. (Writing is my profession: fiction is what I've published for the most part, but I've also done some journalism -- GQ, Esquire, the NY Times, a few others.) Anyway, they say I can write on pretty much whatever I want to, and so I thought chronic prostatitis / chronic pelvic pain syndrome would be interesting; it certainly seems under-reported. Before I go back to them with the idea, though, I wanted to have a sense of the scale of the problem.

Anyone have a ballpark number?

I want to alert people to the problem, but I think I'll first need to convince the editor that it really is a problem.

Thanks!

[DavidinLA]

Trying to find an answer to this question has been very frustrating. I'd imagine that gathering statistical data is very difficult due to men's unwillingness to talk about the problem, skewed numbers resulting from the manner in which they were obtained , and inconsistent definitions of what constitutes CP/CPPS (for example, the duration of the condition) as well as lack of positive diagnosis. I have been told by some Urologists that they believe the incidence is as high as 10%. Others put a more conservative estimate of 1% to 3%.

Here is an article from the Urology Times that gives one perspective on it.
http://www.urologytimes.com/urologytime ... ?id=180304

Study of prevalence in Singapore:
http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

A recent discussion in this forum:
viewtopic.php?t=4169&highlight=incidence

Another discussion from two years ago:
viewtopic.php?t=2439&highlight=incidence

[scoobysnacks]

darin,

I just went to see Dr Wise and Tim Sawyer at the Stanford Clinci, two things:

1) They reported 20,000 hits to their website for the month of November, and;
2) Mens Health is writing an article on this subject as well, since Dr Wise has been in touch with them. Don't know if/or when the article will come out.

We asked the same question to each other at the clinic. We also wondered has this been around forever, or is it a new problem with the turn of the century? Tough to say, I could make arguments I suppose on both fronts.

I believe in the past, men just suffered. There was a man I met who is 67 and has had this for forty years, but up to the last ten years, you never heard anything about it. Makes you say hmmmm....the dawning of the internet and sharing of information has uncovered this to its fullest in my opinion. Before then, many men were destined to [webslave edit: antibiotics, first and foremost], pain pills, anti-inflammatories, and unproductive 6 mos check-ups to the doctor to monitor the condition.

And of course this was never, nor is it now, something you discuss at your next dinner party or wine and cheese. Many of us suffer in silence only sharing with our closest confidants.

Regards,

SS

[GS]

I've heard that it is the most common reason for a man below the age of 50 to visit a urologist. If that helps.

[Howden]

One urologist advised me that between 8-11% of men have prostatitis at some time in their lives. Another told me the figure was 8%. They may all be sharing the same guesswork, though. As we are.

[webslave]

A prostatitis diagnosis is assigned at 8% of all urologist and 1% of all primary care physician visits in the USA.

[CppsDad]

How many urinary problems and/or EDD problems are related to pelvic floor dysfunction? I think more than the statistics will show (I have no real basis for this other than gut feeling). Perhaps most men don't get the severity of symptoms we have on this board, but I think there are more people with pelvic floor problems that we'll ever know. For most, simple drugs probably help them, and they don't actually treat the source of the problem.

Mike

[DavidinLA]

How many urinary problems and/or EDD problems are related to pelvic floor dysfunction? I think more than the statistics will show (I have no real basis for this other than gut feeling). Perhaps most men don't get the severity of symptoms we have on this board.

I have wondered this for a while now. Reading the symptoms of the various people in this forum, we see that almost everyone has a different combination of symptoms and intensities. A lot of us never get urinary problems whereas others have that as their main symptom. I guess this can be expected given the complex nerve structure of the pelvic area -- that different symptoms will occur depending on which part is affected. It seems conceivable to me that there are men out there with ED and not other symptoms (or if so, very minor) which is caused by pelvic muscle disorder. If they decide to get it checked out, the doctor just prescribes Viagra without understanding the problem as you say and therefore are never included in the stats.

For most, simple drugs probably help them, and they don't actually treat the source of the problem.

Which is what I like about the Stanford/Wise-Anderson Protocol, even though I have not yet tried it.

[scoobysnacks]

How many urinary problems and/or EDD problems are related to pelvic floor dysfunction? I think more than the statistics will show (I have no real basis for this other than gut feeling). Perhaps most men don't get the severity of symptoms we have on this board.

I have wondered this for a while now. Reading the symptoms of the various people in this forum, we see that almost everyone has a different combination of symptoms and intensities. A lot of us never get urinary problems whereas others have that as their main symptom. I guess this can be expected given the complex nerve structure of the pelvic area -- that different symptoms will occur depending on which part is affected. It seems conceivable to me that there are men out there with ED and not other symptoms (or if so, very minor) which is caused by pelvic muscle disorder. If they decide to get it checked out, the doctor just prescribes Viagra without understanding the problem as you say and therefore are never included in the stats.

For most, simple drugs probably help them, and they don't actually treat the source of the problem.

Which is what I like about the Stanford/Wise-Anderson Protocol, even though I have not yet tried it.

Nerves do play a big part in the difference of symptoms, but so too does the placement, or should I say development, of the trigger points. Tps further up near the prostate cause more prostate pain and urge and frequency. The ones middle to further back seem to cause the golf ball feeling, tightness of the rectum, and many LUTS symptoms. These are just realizations from studying AHIP and where the TPs lie. So although nerves will cause this, I believe the placement of Tps will cause the differing symptoms more often than nerves.

Some may disagree.

SS

[Sleeper Service]

Given the alleged incidence of CPPS, the attached is particularly saddening:

http://news.bbc.co.uk/1/hi/health/6190919.stm

[GP2]

On this subject all I have to say is we must believe that over the next 10 years or so light will be shone on this condition and treatment will become more specialized and exact. With the help of David Wise this is already happening. Ideally warding off chronic prostatitis / chronic pelvic pain syndrome for those with the potential to suffer it would also be a massive develpoment. Risk factors, personality types, genes etc all ply a role & as Webslave believes there may be a link between the bio-chemistry of the brain and the pelvis.