Statistics

[SickofCP]

Anyone know of any statistics available on the duration of CP/CPPS?

I read somewhere that most go into remission from 6 months to 1 year. I can't seem to find anything on this.

My family doctor assured me that I won't live my life like this. My urologist was not as confident, but did say that in most cases it clears up; however comes back years down the road.

Your help is appreciated.

[webslave]

After years of reading about this, I see no clear pattern other than the common one: a severe initial episode followed by years of waxing and waning.

[SickofCP]

Are you saying that most do not fully recover, even for a temporary period? I don't think that's true.

[Dan in T.O.]

I asked this same question (sort of) in my first post last week (see New Member- Long term sufferer).

I know that the readers of this forum won't like to hear this, but I have had CP for the last 30 years, and the flare ups have become more intense and more frequent in the last 10 years. I'm not looking for sympathy, nor am I trying to discourage my fellow sufferers. I would just like to know if there is anyone else out there in a similar situation. I would very much like to see a statistical study on the duration of CP.

p.s.
I have never given up hope and continue to try new treatments and have been involved in 3 double blind research studies with Dr. Nickel.

Best wishes to all readers.

[webslave]

Are you saying that most do not fully recover, even for a temporary period? I don't think that's true.

Frankly, nobody knows how many recover, for how long, or most elements of the natural history of this condition. My views are probably biased by my exposure to the worst cases.

[twerges]

There are no scientific studies on the typical duration of CP. However, a reasonable guess can be made. It seems that CP sufferers can be divided in to three groups:

1. CP resolves on its own within 6 months. This group constitutes 60% of sufferers.

2. CP starts with a severe initial outbreak, and lasts 2-5 years. Thereafter, CP "recurs" once or twice later in life. This group constitutes 30% of sufferers.

3. CP starts with a severe initial outbreak, and never subsides. This group constitutes 10% of sufferers.

In formulating this guess, I relied on several sources:

1. There are statistics on the incidence and prevalence of CP. The ratio of these numbers (incidence:prevalence) suggests a typical course of a few years. If CP never went away, we'd expect the prevalence to be far higher than the incidence.

2. Very few of the posters to the various message boards report that they've had prostatitis unabated for decades. On the other hand, a huge number of posters indicate that their suffering greatly decreased after the 3rd year. There are lots of sufferers who post that they had CP previously, but it went away completely for a few years, and now they are in some kind of relapse.

3. If CP never goes away, yet is never fatal, then the only dimunition of CP cases would come from death from other causes. If CP never went away, then most CP sufferers would be older, and the population with the highest prevalence would be the elderly. This doesn't appear to be the case.

In short, there are no statistics on how long CP lasts. But some other statistics can help to give us a rough guess.

tom

[webslave]

You will forgive me, Tom, if I disagree with your stats. I really don't think the 60% in 6 months is accurate. For starters, you must have pain and symptoms for >6 months even to be categorized as having CPPS, by definition (remember the word "chronic"?).

On the other hand, I have met (just socially, not through my chronic prostatitis / chronic pelvic pain syndrome contacts) a few guys who had a short episode of "prostatitis" that came, went and never returned. It didn't fit the description of an ER-type acute prostatitis. I guess they had something completely different going on, like a UTI, urethritis, cystitis, etc.

[twerges]

You will forgive me, Tom, if I disagree with your stats. I really don't think the 60% in 6 months is accurate. For starters, you must have pain and symptoms for >6 months even to be categorized as having CPPS, by definition (remember the word "chronic"?).

On the other hand, I have met (just socially, not through my chronic prostatitis / chronic pelvic pain syndrome contacts) a few guys who had a short episode of "prostatitis" that came, went and never returned. It didn't fit the description of an ER-type acute prostatitis. I guess they had something completely different going on, like a UTI, urethritis, cystitis, etc.

I used the term "CP", not the term "CPPS." Perhaps I should have used the term "Prostatitis." The difficulty here is one of terminology. The six-month requirement for chronic prostatitis / chronic pelvic pain syndrome is kind of arbitrary. On the day of the 6th month anniversary of pain, does the sufferer suddenly acquire a new disease ("CPPS"), and lose the old one ("Prostatitis")? But you're correct, I should have used the term "Prostatitis" rather than CPPS.

Of the people who have short bouts of prostatitis... Naturally it's not known if they have the same disease as chronic prostatitis / chronic pelvic pain syndrome people, but a less severe and shorter form, or if there's an entirely different etiology. I can't speculate on this.

But Dmitrakov published a study a few years back of the efficacy of Cipro in Cat-IIIb prostatitis. That study showed a cure rate of 87% during the first 6 months, in the placebo group. (The treatment group was roughly the same). This seems to support the view that a large percentage of people diagnosed with Prostatitis get better on their own and relatively quickly. Furthermore, I read a statistic recently that there are ~500,000 new diagnoses of cat-IIIb prostatitis every year in the US, most of whom obviously don't have it for the remainder of their lives, because that's about 0.5% of the adult male population every year! It's widely believed that cat-IIIb prostatitis is very common, one of the more common complaints in a urology practice. The urologists that I saw indicated to me that it was relatively probable my prostatitis would subside on its own in a few months, but if it didn't, I'd have it for a long time.

Therefore I contend that my initial estimate of 60% being cured in the first 6 months may actually have been conservative.

Of the people who have a "chronic" condition (>6 months), a 3-5 year course seems to me to be common. I base that solely on the large number of people on newsgroups who hang around for about 3 years, then suddenly say "I feel a lot better, and I haven't done any new treatments." These people greatly outnumber those who indicate that they've had chronic prostatitis / chronic pelvic pain syndrome for decades. Furthermore, there were a lot of people who would report: "I had chronic prostatitis / chronic pelvic pain syndrome for a few years, and it went away entirely; but now it's back." This group also greatly outnumbered those who claimed continuous chronic prostatitis / chronic pelvic pain syndrome for decades.

[webslave]

This is an interesting topic that highlights a hiatus in the medical knowledge of this condition: the natural history.

A few comments -

• both CP and chronic prostatitis / chronic pelvic pain syndrome have the 6 month proviso attached, so anyone having symptoms for less than that time has not had either condition;
• I have contacted men who stopped posting on the newsgroups, long after they stopped posting. They usually report continued symptoms at a low level, not cure;
• very few men report complete cures before leaving discussion groups on the topic. Most leave because they feel they have gained all they can from participation, or they have a remission after following some advice (for instance, the advent of quercetin saw up to 80% of posters leave the newsgroup), or they tire of the bickering (Usenet);
• I agree that we need to know more about the people who have single, self-limiting, non-repeating bouts of what seems to be "prostatitis" - what IS this? A huge number of men seem to be in this category, including Dr Shoskes himself, apparently;
• Dr Dimitrakov's study highlights 1) the efficacy of placebo (a factor that invalidates a lot of historical CP/CPPS research conducted without placebo) and 2) the waxing/waning nature of chronic prostatitis / chronic pelvic pain syndrome (another factor that bedevils outcomes in this field of research and makes placebo control groups and double blinding essential).

[Adam Boyd]

Dr Dimitrakov's study highlights 1) the efficacy of placebo (a factor that invalidates a lot of historical CP/CPPS research conducted without placebo) and 2) the waxing/waning nature of chronic prostatitis / chronic pelvic pain syndrome (another factor that bedevils outcomes in this field of research and makes placebo control groups and double blinding essential).

According to the abstract, Dr. Dimitrakov's patients were treated with either antibiotics or placebo, however both were given in combination with prostatic massage. Thus, it's impossible to say whether the perceived benefit was a true placebo effect, was a result of the natural waxing and waning course of the disease, or if it was the result of the massage. My guess is that it had a lot to do with the massage.

[webslave]

I agree. Placebo effect alone never runs as high as 87%.

[latte]

This is an interesting topic since I am 52 and have had bouts of, let's say, prostate pain off and on since I was 26. Since that initial attack in 1976 my prostate never really felt the same but the pain subsided to where I could live a very normal life and just considered my condition an annoyance. Every two or three years it would hurt bad enough to go to the doctor and he would give me antibiotics. I would always get better in 1-3 months and it would resolve. I always wondered at the time since the doctor never found any pathogen(bacteria) in my urine or EPS. At the time I just considered that the bacteria must be "stuck" in the prostate. I lived like this for about 25 years and it never was really a problem until September 2001. I had the usual symptoms, back pain, painful urination but this time it was more electric feeling, like nervous. It got a bit better over the first three months on antibiotics but then got much worse, worse than it ever had before. Since then it has been a never ending search for a daily regiment that will improve the condition because this time is has greatly affected my life in many ways I never would have dreamed were possible. So, in regards to the topic, I have had prostate pain resolve many times until this time. It now feels like my prostate just sort of wore out and it now too weak to regain its integrity, very frustrating. In the last year there have been periods where is was better but never to the same place it was before this severe attack. I still can't come up with a formula to really improve it and I have taken elmiron, steroids, Atarax, Quercetin ad nausea, neurontin, Elavil, Flomax, vitamins, saw palmetto, diflucan, proscar, physical therapy etc. How frustrating is this? Will it ever get better. Maybe I am in the 10% were it never goes away now. I need an answer and I don't think there is one.

[webslave]

Maybe Botox will help you. I don't think you've tried everything yet, BTW.

[Richard.N]

What about direct neuro modulation like Interstim (?). Having had this thing for so long Latte, do you perceive a change in pace in new developments?

[latte]

I first urologist I visited back in 2001 asked that I come back and see him about a month ago. Incidentally, he never mentioned anything other than antibiotics and he knows all the famous urologists, at least he claims. He never mentioned elmiron or Quercetin a year ago although he suspected that my condition may be IC. Anyway, I saw him in January and he suggested interstim. I collected a few opinions and the consensus was that it has about a 40% of improving but can also make it worse. I am not sure I could handle it if it got worse so I put it on hold for awhile. I would like to try other forms of neuromodulation when they are available.
I do see a rapid pace of developments in clinics that really care about this condition which there are only a few. In Nichols book he stated that new studies may elucidate the underlieing causes and result in radical changes in treatment but, in my opinion, it may take quite a few years to revolutionize treatment in the US.