Old Members

[garyholc]

Just been reading from the very last page of this "folder" backwards, and I wondered if there is anyone here still in touch with some of the people who posted on here? People like 'faceinthecrowd' and 'a50' I would be keen to know how they are these days after reading their posts. As for other people who posted on here back then (2002-3) I wonder if they are fully recovered now and hence not posting on here anymore, or if they just can't be bothered anymore. Would be really interesting to hear from some of those old members as to how they are now getting on....

[graeme]

if you were still in pain i imagine this site would be impossible to let go of

[Sleeper Service]

Most got better after a few years and moved on.

[alprost]

Most got better after a few years and moved on.

This statement is at odds with the available research on the time-course of chronic prostatitis / chronic pelvic pain syndrome and you are stating it as if it were a fact rather than speculation. Therefore, I have to ask the question - how do you know that this is the case?

The only way you could possibly know this is for you to have contacted each of these members and asked them individually - have you done this?

[Sleeper Service]

This statement is at odds with the available research on the time-course of chronic prostatitis / chronic pelvic pain syndrome and you are stating it as if it were a fact rather than speculation.

Actrually it's correct based on the longest term study available:

http://www.ncbi.nlm.nih.gov/sites/entre ... t=citation

I have the full paper, not just the abstract, which makes interesting reading. About 13% of the chronic prostatitis / chronic pelvic pain syndrome population have symptoms for over 10 years (which means 87% don't) - although it should be pointed out that this is not necessarily constant symptoms - the peak incidence is between two and ten years (with, I suspect, a bias towards two to five). This would indicate that chronic prostatitis / chronic pelvic pain syndrome does, in fact, generally get better with time.

In addition, if you look at statistics on incidence and prevalence then it is quite apparent that chronic prostatitis / chronic pelvic pain syndrome is generally a self limiting condition. This is probably the reason that the medical community doesn't treat it as a major issue - because it's not life threatening and generally gets better. Of course, that's no comfort to those who don't which is why it is important researchers continue to explore novel therapies.

Finally, anecdotally, most Uros will advise you that it usually burns out over time too. Of course, 'usually' is not the same as 'always' but for the majority it does, others may have to take different measures.

You shouldn't draw significant conclusions from short duration (i.e. one year) studies.

Therefore, I have to ask the question - how do you know that this is the case?

From reading the people in question's posts - faceinthecrowd is a good example. Of course, I could be wrong but why would someone post nearly every day, state they're better and then stop posting completely?

His last post:

by faceinthecrowd on Tue Oct 12, 2004 9:03 pm

oneday, thanks for the reply. But you see, my symptoms have reduced to the point where they do not really interfere with my daily life. There are no real limits on what I can do, so I don't forsee any tough times, although anything is possible. Tt is the sex issue really that concerns me - I don't want to live with the guilt of giving this problem to someone.

See?

The only way you could possibly know this is for you to have contacted each of these members and asked them individually - have you done this?

Nope, but ask yourself this:

1) Most of them stopped posting after feeling better.
2) People who have had re-occurrences have posted after long periods of time - Richard N and Paso being two examples. If people fall ill again they come back.

Most, not all, do get better with time. I'm sorry if that's not a popular viewpoint but it seems to be the case. Some people get better with treatment, some get better naturally and a minority just don't improve at all.

So it goes.

[carld]

Good post sleeper, I agree with you...Speaking for my self 2 years into my onset and I have recovered well and I'm still here because I'm paying all the help I got back....

[graeme]

Remissions can happen in time even with no treatment(only a few months of failed antibiotics)
I've had 2 one lasted 4 years from 1996 -2000 & 2005 -2007 (August) i am now in this current relapse and and this time I'm treating it to speed things up i hope and so ican deal with it and know what to do on further relapses in life

Cure no but remissions are possible both mine came after a few years of each bout with the 2 years mark being the turning point !

[alprost]

This statement is at odds with the available research on the time-course of chronic prostatitis / chronic pelvic pain syndrome and you are stating it as if it were a fact rather than speculation.

Actually it's correct based on the longest term study available:

http://www.ncbi.nlm.nih.gov/sites/entre ... t=citation

I have the full paper, not just the abstract, which makes interesting reading.

I agree that this study lasted 3 years, but it's findings are at odds with 3 well-designed recent studies outlined below which have used validated assessment instruments to evaluate symptoms over time (NIH-CPSI). Looking at the abstract of the study you have cited, the authors are vague as to how they have assessed symptomatic improvement, simply stating that 'vast majority of the remainder got better' If you have the full paper, how did the authors of this study actually measure improvement? I'd be interested to know whether they used a validated measurement tool, as this would give us an idea of how much weight to give the findings of this particular study (you will also be saving me a tenner to download it ).

Study 1 - A prospective study of symptoms and quality of life in men with chronic prostatitis/chronic pelvic pain syndrome: the National Institutes of Health Chronic Prostatitis Cohort study Propert et al (2006):

31% considered themselves moderately or markedly improved at 2 years.

There is no evidence that the disorder worsens significantly during 2 years of followup

group mean symptom scores were stable and improved slightly over time

The final point above refutes completely the statement that most people get better with time. Statistically, you have the greatest chance of staying the same or improving slightly. The good news is that symptoms tend not to worsen, and that around a third of men report significant improvement - Graeme and Carl - you guys are probably in this category

Study 2 - Chronic prostatitis/chronic pelvic pain syndrome: Symptoms are aggravated by cold and become less distressing with age and time (Hedelin & Jonsson 2007):

There was a strong negative correlation between age and the NIH-CPSI quality of life (QOL) score (correlation coefficient -0.646; p<0.001).

Independent of age, the duration of the disease also correlated with the NIH-CPSI QOL score (correlation coefficient -0.48; p<0.02).

The total NIH-CPSI score did not correlate with either age or the duration of the disease

Age, as well as the duration of the condition, influenced the distress induced by CP/CPPS, suggesting an improved coping ability with time as well as age.

i.e. according to this study, chronic prostatitis / chronic pelvic pain syndrome symptoms do not improve markedly over time, rather, our ability to cope with them does.

Study 3 - Prostatitis-like symptoms: one year later. (Nickel et al 2002):

About a third of men reporting prostatitis-like symptoms in the general population had resolution of their symptoms (usually those with a shorter duration and less severe symptoms) 1 year later.

The severity of symptoms of men with persistent chronic prostatitis remained relatively unchanged over the year.

This was only a short-term study, but again it casts doubt on the idea that chronic prostatitis / chronic pelvic pain syndrome symptoms improve with time. Although it highlighted that around a third of men with less severe symptoms over a shorter period of time have a good chance of recovery, I'd imagine that the vast majority of members of this site fit into the other group with more severe symptoms which have been present for a longer time.

Finally, anecdotally, most Uros will advise you that it usually burns out over time too. Of course, 'usually' is not the same as 'always' but for the majority it does, others may have to take different measures.

Frankly, I put absolutely no weight in what Uros tell me based on anecdotal information, and I'd advise others not to either. Again, you say 'most Uro's' - how many have you actually spoken to? I've seen 4 and not one of them has told me that when asked.

You shouldn't draw significant conclusions from short duration (i.e. one year) studies.

I agree, but you also need to look at the assessment instruments studies are using before putting too much weight in their findings(which is why i'm interested in finding out how Evans et al did this in their study) , and you also need to form conclusions based on all of the available research, not just one paper.

Most, not all, do get better with time. I'm sorry if that's not a popular viewpoint but it seems to be the case.

Actually, I wish it were the case but, the weight of the available evidence suggests that it is not. The bottom line is that it seems that around 30%, not most, men get better with time.

[graeme]

It faded away for this Philip Allson, but it took a few years !

viewtopic.php?f=48&t=5226

I believe to learn a good relaxation skill is the key to prevent relapses, I don't think Dr Wise has had a relapse I may be wrong

[Sleeper Service]

I agree that this study lasted 3 years

Actually it's five years which is why it's the one that has most relevance.

but it's findings are at odds with 3 well-designed recent studies outlined below which have used validated assessment instruments to evaluate symptoms over time (NIH-CPSI). Looking at the abstract, the authors are vauge as to how they have assessed symptomatic improvement, aimply stating that 'vast majority of the remainder got better' If you have the full paper, how did the authors of this study actually measure improvement?

The Washington symptom scale later superceded by the NIH-CPSI scale. In other words the recommended methods used by everyone else.

The final point abpove refutes completely the statement that most people get better with time.

No it doesn't for the following reasons:

1) It only measures symptoms across a two year period. This is too short - we know that peak symptom duration is 2 to 10 years (prob 2 to 5).
2) It is unclear what the duration of symptoms is in the population. Are these men from a sample that has long term symptoms or were they symptom naive at inception? Both could distort the results.
3) It retains withdrawals in the denominator - which is bizarre - so 31% equates to 138 patients who are moderately marked or improved over a two year period. Taking 138 over 293 gives nearly 50% improvement over this time. Again we need to know symptom duration at study inception to draw any real conclusions here.

I will download this tonight and review their methodology and the criteria for the sample population. Without understanding this all we have is an abstract that can be interpreted in a number of ways - that's why I think it's important to have the full paper before coming to any conclusions.

Statistically, you have the greatest chance of staying the same or improving slightly. The good news is that symptoms tend not to worsen, and that around a third of men report significant improvement - Graeme and Carl - you guys are probably in this category.

Again I disagree. I will advise further when I've reviewed the full study, however, the British study - which I do have - puts recovery and symptom improvement at a much higher figure.

i.e. according to this study, chronic prostatitis / chronic pelvic pain syndrome symptoms do not improve markedly over time, rather, our ability to cope with them does.

Sorry but this is meaningless in the context of how chronic prostatitis / chronic pelvic pain syndrome affects the general population. All it demonstrates is that those patients for whom it doesn't go away cope better as time goes on - you'll note the symptom duration in this sample is 18 months to 40 years. In other words, it's not representative of the population as a whole, it's just a snapshot of a select group and tells us nothing about progression.

This was only a short-term study, but again it casts doubt on the idea that chronic prostatitis / chronic pelvic pain syndrome symtoms improve with time.

Not really. I have this paper - it states that those who reported symptom remission had symptoms for about a year. Those who didn't had a mean duration of two years. Again it's too short to tell. It's also complicated by the poor return rate.

Frankly, I put absolutely no weight in what Uros tell me based on anecdotal information, and I'd advise others not to either. Again, you say 'most Uro's' - how many have you actually spoken to? I've seen 4 and not one of them has told me that when asked.

I've seen two and both did. When asked my current Uro advised that's most of his colleagues' experience. You can put no weight in that if you like, that's your call. I'm more interested in what their actual experience is though and, unfortunately, anecdotal is all we have apart from a few studies.

I agree, but you also need to look at the assessment instruments studies are using before putting too much weight in their findings(which is why I'm interested in finding out how Evans et al did this in their study) , and you also need to form conclusions based on all of the available research, not just one paper.

I agree. That's why we also need to understand the selection criteria for Study 1. I would point out that I'm an MI manager and a Sigma Green Belt (Sigma is a worldwide acknowledged stats, process design and improvement methodology) and whilst the UK study isn't as precise as I would like its methodology is sound enough to give sufficient robustness to their findings.

Actrually, I wish it were the case, but, the weight of the available evidence suggest that it is not. The bottom line is that it seems that around 30%, not most, men get better with time.

Sorry, the evidence suggests that simply isn't the case. Population studies show that prevalence is about 1 to 3% of the population and incidence anything from 0.1 to 1.5%. Taking a mean of 0.5% and a 'cure' rate of, say, 33% of that sample you hit 1.84% at 5 years, 3.51% at 10 years, 6.87% at 20 years and 13.57% at 40 years. So, if you took a sample of all men aged 20 to 70 years you would expect 17% of men - or 5,100,000 British men - to have chronic prostatitis / chronic pelvic pain syndrome at any one time whereas properly set up studies suggest a figure of less than one-fifth of that amount. Ok, it's a bit simplistic because we're not allowing for age related mortality - if we do that the it's roughly 10% or 3 million men - but it demonstrates the principle.

I'll post the symptom duration distribution figures from the UK study when I get home.

The trouble with a lot of these studies are that they aren't statistically sound - too many incidence and prevalence stuides have horribly biased selection criteria or are too short in duration or just plain dont follow some pretty basic statistical principles. Where we do have good data it suggests that most people do improve.

[alprost]

I agree that there are issues with statistical methods and sampling, but on the basis of the available studies most do not support the contention that chronic prostatitis / chronic pelvic pain syndrome sufferers can expect symptom resolution with time - only one does. Further well designed long term studies are required.

Where we do have good data it suggests that most people do improve.

Yes, but by how much - that's my point. That is why I have an issue with the statement that most people 'get better' with time. If someone has severe symptoms and they improve over time by 25%, that may have little impact on their QOL. It is interesting academically, but not of much practical significance. There is a big difference between this and saying that most people get better as you did in your original post, which hints at symptom resolution.

You mention that peak symptom duration occurs at 2-10 years. On the basis of the available evidence, I don't believe this to be the case, but supposing it is......Again, from a practical standpoint, are you are suggesting that it is a good strategy for someone with severe symptoms to simply wait for such an extended period of time, during what may be critical years of their life?

[graeme]

It would be interesting to hear off anybody who has had this for over 5-10 years and has not improved (less severe) or had any remissions in this time!

Let's not forget there was basically no treatment for this before the SP so for any guys who were out there struggling in the 90,s and before what is your experience in this ?

[Sleeper Service]

I agree that there are issues with statistical methods and sampling, but on the basis of the available studies most do not support the contention that chronic prostatitis / chronic pelvic pain syndrome sufferers can expect symptom resolution with time - only one does. Further well designed long term studies are required.

Absolutely agree. We need more studies conducted over 5 to 20 years. Tall order, I know!

Yes, but by how much - that's my point. That is why I have an issue with the statement that most people 'get better' with time. If someone has severe symptoms and they improve over time by 25%, that may have little impact on their QOL. It is interesting academically, but not of much practical significance. There is a big difference between this and saying that most people get better as you did in your original post, which hints at symptom resolution.

The word the UK study uses is 'cured'.

You mention that peak symptom duration occurs at 2-10 years. On the basis of the available evidence, I don't believe this to be the case, but supposing it is......Again, from a practical standpoint, are you are suggesting that it is a good strategy for someone with severe symptoms to simply wait for such an extended period of time, during what may be critical years of their life?

Absolutely not and apologies if I've given that impression. I think that time heals for some but I suspect most have to work at recovery - changing behaviours, undertaking appropriate therapies, etc. In no way did I mean to imply that all one has to do is sit back and relax and let nature take its course because I don't think that's going to work for most people - if you have TrPs you need them treated, if you have stress you need to learn how to control it, if you have dietary considerations you need to adapt to those, if you have physical abnormalities you need to correct them. Time, whilst a great healer, often needs help and if you don't break the instigators of symptoms then it never gets a chance to begin that process.

[Sleeper Service]

And here's the graph:



The words they use in terms of resolution are:

Multimodal therapy is best with most patients being cured over time and some taking a few years quite feasibly.

[alprost]

The words they use in terms of resolution are:

Multimodal therapy is best with most patients being cured over time and some taking a few years quite feasibly.

On the basis of this sentence it seems they are saying that, as a result of multi-modal therapy, most patients are cured over time. This is obviously not the same as simply recovering due to the passage of time. It also appears to be a much higher success rate than other data published by Daniel Shoskes, so I'd be interested to know what their clinical interventions consited of.

As agreed, there are some issues with some of the studies discussed. However, I don't agree that we can completely discount their findings - it just means we need to interpret all of the available data with an element of caution. On the basis of all of the available evidence, including the information you have posted above, I don't belive that the passage of time on it's own accounts for much improvement for the majority of men with chronic prostatitis / chronic pelvic pain syndrome - particularly those who post on this site - who are likely to be a biased sample with many men who are refractory to most commonly used treatments. That's why they end up here.

Absolutely not and apologies if I've given that impression. I think that time heals for some but I suspect most have to work at recovery - changing behaviours, undertaking appropriate therapies, etc. In no way did I mean to imply that all one has to do is sit back and relax and let nature take its course because I don't think that's going to work for most people - if you have TrPs you need them treated, if you have stress you need to learn how to control it, if you have dietary considerations you need to adapt to those, if you have physical abnormalities you need to correct them. Time, whilst a great healer, often needs help and if you don't break the instigators of symptoms then it never gets a chance to begin that process.

Agreed - this clarifies things.