Thoughts on SP, PT in general and the passage of time...

[robertpagen]

Dear all,
As an occasional visitor now to this site which was so helpful to me in a time of need, I offer my input in no particular order.

David Wise is a solid good man who even after solving his problem, cared enough to expend the effort to help others. In so many aspects of this world, this type of action is admirable. It is good that he is rewarded for it. I have met him personally and I can tell you that I, a forty year old man who has met many successful men, consider him one of my heroes and life models.

It is over one year since I have experienced any symptoms. A search of my cumulative postings are a testament to the pernicious experience I had with pelvic pain and the resulting anguish. Healing is ultimately a complex combination of many factors. A confluence of observations of self and resulting positive action.

It is unusual and surreal to be without pain and urgency and the resulting depression. I wonder if anyone can relate to that. it was such a constant for so long and such an incentive for growth and change.

Happy Holidays to all and Be Well,
Robert Pagen
White Plains NY

[Sleeper Service]

Thanks Robert, I agree that Dr Wise is a very positive role model for a lot of men with this condition, I just don't think that his unique brand of treatment is essential for recovery.

Graeme also raises a good point: were it not for the likes of Dr Wise and A HEADACHE IN THE PELVIS we would probably still be popping antibiotics and living in ignorant mystery. Of course, it's not just Dr Wise - Drs Shoskes, Nickel, Dimitrakov and others have all helped us immeasurably along the way and continue to do so.

However, webslave also deserves a huge amount of credit by enabling men to have a place to talk about this condition without resorting to voodoo infested newsgroups or outdated general 'factsheets' on prostatitis. Although I do not agree with all we say here I'm damn glad of the opportunity to read and learn instead of being given ineffective and damaging medication and sent on my merry way.

Hope everyone has a good holiday.

Mark A.

[alprost]

I have to admit to feeling the same level of frustration when I read the initial post on this thread and several which have followed.

Sleeper service - you are basing many of the points you make on the assumption that you don't have trigger points - how do you know? What measures have you taken to find out?

A couple of points:

• If kegels (i.e. muscular contractions of the most likely offending muscles) make your symptoms worse, and you need a cushion to make sitting more comfortable, it is highly likely that you have trigger points.
  
  With regards to the passage of time, the scientific evidence states that this has no impact on chronic prostatitis / chronic pelvic pain syndrome recovery - you have an equal change of getting slightly worse, slightly better or staying the same over time.

The position you are in, and the points you make are completely understandable - I've been there myself, but you are basing your future well-being on an assumption which you have not tested rigorously.

Your post illustrates why I completely disagree with recommending PT's without extensive training in chronic prostatitis / chronic pelvic pain syndrome to patients. Rather than getting people to 'buy-in' to the theory, it has the opposite effect - Patients go and see them, they fail to diagnose trigger points, and they then give up on the idea that trigger points are responsible for their symptoms and start assuming other factors are responsible for their condition. And they are then firmly on the wrong track.......

This is also why I'd imagine DW focuses on promoting the SP - as Webslave says:

DW only has complete confidence in the treatment he, his PTs and Rodney Anderson offer

[graeme]

I think for many men not all that it does fizzle out with time but only into remission not cured like Phillip Aronson who also has had it return for one month, myself I had a 4 year complete remission but it returned, the protocol is to keep it at bay for ever in the book A HEADACHE IN THE PELVIS Dr Wise say he still does his relaxation to this day .

[Sleeper Service]

I have to admit to feeling the same level of frustration when I read the initial post on this thread and several which have followed.

I feel a similar level of frustration when the assumption is made that trigger points are responsible for everyone's symptoms when quite clearly they're not. To my mind that assumption is almost as dangerous as assuming everyone has a hidden pathogen.

Sleeper service - you are basing many of the points you make on the assumption that you don't have trigger points - how do you know? What measures have you taken to find out?

Six months of PT and fairly intensive investigation of this syndrome using published peer reviewed studies as my sources.

With regards to the passage of time, the scientific evidence states that this has no impact on chronic prostatitis / chronic pelvic pain syndrome recovery - you have an equal change of getting slightly worse, slightly better or staying the same over time.

A totally misleading statement. This is one study conducted over a period of one year. It's authors acknowledge that it is inadequate to make any long term predictions about the natural history of this syndrome. Furthemore the figures are actually nearer 45/40/15 in terms of better, stable or worse. A more recent UK study conducted over five years concluded that the vast majority of people who remained in the study did get better over a period of two weeks to three or so years.

The position you are in, and the points you make are completely understandable - I've been there myself, but you are basing your future well-being on an assumption which you have not tested rigorously.

Six months of PT isn't rigorous enough? I know you will say that my PT isn't trained, however reading your posting history I could equally argue that you gained initial benefit, relapsed and then regained benefit with another PT. OK, maybe not, but the argument's there.

Your post illustrates why I completely disagree with recommending PT's without extensive training in chronic prostatitis / chronic pelvic pain syndrome to patients. Rather than getting people to 'buy-in' to the theory, it has the opposite effect - Patients go and see them, they fail to diagnose trigger points, and they then give up on the idea that trigger points are responsible for their symptoms and start assuming other factors are responsible for their condition. And they are then firmly on the wrong track.......

Or they don't have trigger points. Once again don't assume a 'one size fits all' cause and solution.

This is also why I'd imagine DW focuses on promoting the SP - as Webslave says:

DW only has complete confidence in the treatment he, his PTs and Rodney Anderson offer

And it still doesn't have a 100% cure rate which implies that it will not work for everyone. As Dr Shoskes has pointed out some people fail miserably on PT and respond to other treatments very well.

Look, I'm not knocking Dr Wise or the SP because it does work for some people. However to pretend it is THE cure is foolish so I'm not going to evangelise about it because we need research into a number of etiologies and treatments. Neither am I arguing that we should do nothing at all - we clearly need to experiment with what works for us and that takes time and effort.

Graeme - I agree that chronic prostatitis / chronic pelvic pain syndrome sadly doesn't go away for everyone and it has a habit of coming back but it seems to go away or reduce to tolerable levels for most people over time. I'm not sure that happens naturally or as a result of finding a treatment that works or a combination of both but it does seem to be the case.

[graeme]

I agree my second bout of this is not as bad as my first ! How I went into a 4 year remission I dont know but the last 12 months I was nearly there again but in August it came back . the first 3 years I had this I had no effective treatment in fact the last 12 months I did or took nothing and it faded away

I am going to see Bill Taylor soon as he is our only option in the Uk ,i am sure I tense my pelvic floor and have trigger points hopefully I will know more by the end of Jan

This Thread just shows how frustrating this disease is with no rights or wrongs

[Sleeper Service]

I think that's sensible, Graeme. I'm going to give myself the full year for post surgical recovery (about another three months) and then consider my options. I must point out that SP remains one of these - we have relations in that neck of the woods and can make a holiday out of the trip!

I guess we just have to keep trying and eventually we'll get there.

[Richard.N]

Drs Shoskes, Nickel, Dimitrakov and others have all helped us immeasurably along the way and continue to do so.

Absolutely. There was no A HEADACHE IN THE PELVIS when I first found this site (which has been life saving). These guys led my management of CPPS.

[webslave]

And it still doesn't have a 100% cure rate which implies that it will not work for everyone. As Dr Shoskes has pointed out some people fail miserably on PT and respond to other treatments very well.

Of course. But note that trigger points are only one aspect of this condition. Note that stress causes the brain to produce urocortin, which affects mast cells and causes inflammation, which is why some people say that relaxing (paradoxical relaxation, autogenic relaxation, meditation, etc) is even more important, but harder to accomplish, than trigger point treatment. So there are two routes by which someone can rile up the mast cells in the urogenital tract: constantly goosing the nerves down there, or sending pro-inflammatory hormones down there (note to self: must modify the page on pelvic myoneuropathy to reflect this).Then there are the issues of atopy (allergy), key for men like me, for instance, who find that wheat (gluten) can make an incipient pelvic pain condition, normally quiescent, flare up within days. DW does not really give much weight to this idea, but I know it is a factor, and we have seen a handful of men who are almost cured just by excluding gluten (a nerve poison for some people) from their diets — anecdotal, but persuasive.

[alprost]

I have never stated that TP's are the only possible source of everyone's problems. What I am saying (and where much of the emerging evidence is pointing) is that, when a full urological work-up has ruled out infection and other urological issues, trigger points are the most likely cause of chronic prostatitis / chronic pelvic pain syndrome symptoms which must be ruled out.

Six months of PT isn't rigorous enough? I know you will say that my PT isn't trained, however reading your posting history I could equally argue that you gained initial benefit, relapsed and then regained benefit with another PT.

No, that is not the case. I gained some initial benefit (possibly simply through the releif of having found out what was wrong), but was made much worse when this PT caused an injury to my pelvis. When I was then treated by another PT I realised that the PT had also missed 14 out of 15 trigger points. So, reading my posting history on an internet forum you could interpret it in this way if that is what you want to beleive. Actually being in my shoes is another matter though......

I think that's sensible, Graeme. I'm going to give myself the full year for post surgical recovery (about another three months) and then consider my options.

That's a perfectly reasonable course of action. The issues I have raised relate to some of the conclusions you are reaching before having tried these options.

I must point out that SP remains one of these - we have relations in that neck of the woods and can make a holiday out of the trip!

If and when you have done this you will then be in a position to re-evaluate some of the points you have made. It would be wise to suspend judgement until then.

[Sleeper Service]

I have never stated that TP's are the only possible source of everyone's problems. What I am saying (and where much of the emerging evidence is pointing) is that, when a full urological work-up has ruled out infection and other urological issues, trigger points are the most likely cause of chronic prostatitis / chronic pelvic pain syndrome symptoms which must be ruled out.

I agree they must be ruled out but by who? Only the Stanford guys?

When I was then treated by another PT I realised that the PT had also missed 14 out of 15 trigger points. So, reading my posting history on an internet forum you could interpret it in this way if that is what you want to believe. Actually being in my shoes is another matter though......

True, you can speak from personal experience. I can only look at what you documented in writing and I'm afraid it does give a different impression.
But mea culpa I suppose.

If and when you have done this you will then be in a position to re-evaluate some of the points you have made. It would be wise to suspend judgement until then.

I'm not judging - I think SP and its variants have helped a lot of people. It's just not the answer for everyone, even those who have had infection and other urological complications ruled out.

At the moment SP has no more backing in terms of verification than, say, Guercini and Bahn's injection protocols or Shoskes' Nanobacterial study. This may change once the double blinded study takes place.

[webslave]

At the moment SP has no more backing in terms of verification than, say, Guercini and Bahn's injection protocols or Shoskes' Nanobacterial study. This may change once the double blinded study takes place.

Have to take issue with this, Sleeper. Federico Guercini in Italy has been injecting prostates for years, and has one pretty impressive published study (albeit in some Italian medical journal), yet the only person who ever posted anything on the 'net about him did so to complain bitterly that he had permanent impotence after the injections. Nobody has posted cure stories, although Guercini must have "cured" thousands of men with his antibiotic+betamethasone injections, according to his study. It makes me question what his definition of a cure is. Sometimes the definition is that the patient, saturated with anti-inflammatory antibiotics and steroids, has no pain right at the end point of treatment. That's a "Dr Song Cure" that says nothing about how the patient will feel in a few months.

As for radiologist Duke Bahn, we have one guy here (james-d) who swears he was cured (albeit with numerous follow-up visits) by his local doctor using Bahn's methods and under direction of Bahn, but even though we know that many people have taken his lead and gone to Bahn as well, no further cure stories emerged. That's worrying, and indicates to me that james-d may be an outlier, someone unusual in some way, someone who may have gotten better anyway. Now let's be generous and say that james-d is a typical patient, and that all the other patients who were cured by Bahn simply do not want to tell us about it. How then could Bahn's injections be working, supposing there is no infection? Well, we already know that if you manage to interrupt the self-perpetuating pain feedback loop in the pelvis, it gives the nervous system time to readjust and cancel the neurological uproar in the region. On this basis, it may not be so strange that known anti-inflammatories (antibiotics and steroids) quell nervous activity in the region and hence allow this process to proceed.

Turning to the question of "verification", or research support, for the Stanford/Wise-Anderson Protocol, you claim that is has as much support as the above (1 study) or Shoskes' nanobacteria theory (which has in support only 2 studies, both by Shoskes himself). You are completely wrong on this point. You are clearly unaware of the extensive and growing literature in this area. If you count the studies published (in the premier urology journal) by Wise and/or Rod Anderson themselves, and then factor in the list of studies concerning exactly the same sort of protocol dealing with IC patients — remember that many researchers contend that chronic prostatitis / chronic pelvic pain syndrome and IC (or Painful Bladder Syndrome) are approximately the same thing — you have a critical mass that lends significant credence to the Stanford/Wise-Anderson Protocol.

In general, and taking the broadest view, this argument or speculation would seem more sensible to me if it moved in the direction of the theory Prof. Theoharides has about disorders like IC and Fibromyalgia, which is that they are complex neuro-immunoendocrine disorders. Treating tender points or trigger points is one way of interfering in the process, and this, combined with the Stanford/Wise-Anderson Protocol's anti-stress measures, helps to relax the pelvic muscles and cancel the CRH/Urocortin flood.

[Sleeper Service]

Have to take issue with this, Sleeper. Federico Guercini in Italy has been injecting prostates for years, and has one pretty impressive published study (albeit in some Italian medical journal)

The paper was presented at the 2002 AUA conference in Orlando, Florida.

yet the only person who ever posted anything on the 'net about him did so to complain bitterly that he had permanent impotence after the injections.

Ah yes, the famous Riccardo.

Anecdotal sotries are merely that; anecdotal.

Nobody has posted cure stories, although Guercini must have "cured" thousands of men with his antibiotic+betamethasone injections, according to his study.

Really?

memberlist.php?mode=viewprofile&u=134

It makes me question what his definition of a cure is.

It does indeed as as some people have had complete resolution with SP others have had partial improvement.

Sometimes the definition is that the patient, saturated with anti-inflammatory antibiotics and steroids, has no pain right at the end point of treatment. That's a "Dr Song Cure" that says nothing about how the patient will feel in a few months.

Guercini's and Bahn's findings were meausred at 6 and 12 months. This information is on your website:

https://ucpps.men/intraprostatic-injections-of-antibiotics-and-steroids-in-prostatitis

Song is clearly a charlatan though as he won't publish at all.

As for radiologist Duke Bahn

A radiologist who specialises in prostate oncology.

we have one guy here (james-d) who swears he was cured (albeit with numerous follow-up visits) by his local doctor using Bahn's methods and under direction of Bahn

Five injections over a period of about six months for complete resolution. Comparable to the SP's estimate of a year to two years for partial resolution, no?

but even though we know that many people have taken his lead and gone to Bahn as well, no further cure stories emerged. That's worrying, and indicates to me that james-d may be an outlier, someone unusual in some way, someone who may have gotten better anyway.

And until double blinded studies are carried out we will continue to speculate. Again the same applies to SP - how many would have got better through time anyway?

Turning to the question of "verification", or research support, for the Stanford/Wise-Anderson Protocol, you claim that is has as much support as the above (1 study) or Shoskes' nanobacteria theory

No, I claim that until double blinded studies are completed they are comparable. Different thing entirely.

You are clearly unaware of the extensive and growing literature in this area.

Actually I have most of the papers, not just the abstracts.

If you count the... ... you have a critical mass that lends significant credence to the Stanford/Wise-Anderson Protocol.

And if you read my posts I agree on this. However, until a double blind study is completed we have no empirical confirmation.

I think you've rather missed my point: I do think SP - or rather relaxation and PT techniques - has a strong case for a subset of chronic prostatitis / chronic pelvic pain syndrome sufferers as a primary treatment, however:

1) It does not address all patients with CPPS
2) It has no double blind sham study to compare it to. Remember, SP talks of a resolution period of one to two years and we know from other studies that a significant number of men's symptoms resolve or improve over this period anyway. What we need to understand is:

a) Did SP hasten resolution?
b) Did it help those who would not improve naturally?

We will only know this from a properly controlled study.

[webslave]

Have to take issue with this, Sleeper. Federico Guercini in Italy has been injecting prostates for years, and has one pretty impressive published study (albeit in some Italian medical journal)

The paper was presented at the 2002 AUA conference in Orlando, Florida.

So what? That is not a sign of quality. Most papers presented there never get published, in fact only 37% of abstracts presented at the AUA meetings eventually get published in peer reviewed journals.

...yet the only person who ever posted anything on the 'net about him did so to complain bitterly that he had permanent impotence after the injections.

Ah yes, the famous Riccardo. Anecdotal stories are merely that; anecdotal.

Why the rolling eyes? He was extremely upset, Riccardo was, and with good reason. Take his case into account if you are considering injections.

Nobody has posted cure stories, although Guercini must have "cured" thousands of men with his antibiotic+betamethasone injections, according to his study.

Really? memberlist.php?mode=viewprofile&u=134

You make my point for me. The user "alan1" was treated by Guercini in October-November 2002 and that "cure" story was posted on this forum a month or so later, in early January 2003. He promised to come back and keep us updated if the cure held, but he never did. I'm tempted to conclude that there was no cure, once the drugs wore off.

Sometimes the definition is that the patient, saturated with anti-inflammatory antibiotics and steroids, has no pain right at the end point of treatment. That's a "Dr Song Cure" that says nothing about how the patient will feel in a few months.

Guercini's and Bahn's findings were measured at 6 and 12 months. This information is on your website: https://ucpps.men/intraprostatic-injections-of-antibiotics-and-steroids-in-prostatitis Song is clearly a charlatan though as he won't publish at all.

Well, without access to the full text of his study, we are speculating here, but note that alan1 stated that a MRI saw "diffuse inflammation in the tissues" of his pelvic floor around the prostate. We know that over 90% of men have little to no inflammation in the prostate tissue itself, sooo... what exactly is happening here? I posit this: steroids injected into the area subdue mast cell activity. Great, feels like a cure. May even be a cure, if that allows the neuronal windup to subside, and you are not an habitual pelvis-clencher who will bring the syndrome back, given time, no matter what. Dangers of this treatment: impotence (see Riccardo) and acute prostatitis infection from the needle (needles into the prostate, as during biopsies, are a major cause of acute prostatitis).

Five injections over a period of about six months for complete resolution. Comparable to the SP's estimate of a year to two years for partial resolution, no?

No, I wouldn't put it like that. Firstly, I'd guess the costs are not that different. Secondly, the SP takes one week, with an emphasis on changing your mental and physical habits for life. The SP has zero risk, but injections into the prostate do carry a risk, as we have seen. So which route do you go first, the conservative but safe one, or the risky "quick fix"?

Again the same applies to SP - how many would have got better through time anyway?

For that you need to look at studies of the natural history and epidemiology of CPPS.

I claim that until double blinded studies are completed they are comparable.

Outline for me how you'd design a double blinded study for the SP.

SP talks of a resolution period of one to two years and we know from other studies that a significant number of men's symptoms resolve or improve over this period anyway.

The Wise and Anderson study (PMID 16952676) states an average 5-month followup.

[Sleeper Service]

So what? That is not a sign of quality. Most papers presented there never get published, in fact only 37% of abstracts presented at the AUA meetings eventually get published in peer reviewed journals.

However it was still presented in front of the world's biggest forum on urology. I appreciate it's a subjective comment but then so is "some Italian journal".

Why the rolling eyes? He was extremely upset, Riccardo was, and with good reason. Take his case into account if you are considering injections.

Absolutely. Neither Guercini or Bahn claim the procedure is risk free - in fact Bahn suggests it's only an option if all others have been exhausted - but Riccardo is just an anecdotal account. You know as well as I do that unhappy customers are much more vociferous than happy ones.

You make my point for me. The user "alan1" was treated by Guercini in October-November 2002 and that "cure" story was posted on this forum a month or so later, in early January 2003. He promised to come back and keep us updated if the cure held, but he never did. I'm tempted to conclude that there was no cure, once the drugs wore off.

bti20 promised to update his after e-mailing his cure story. He never did. Your assumption that there is no cure because he didn't post here is tenuous to say the least. There are a lot fo people who promise to and, unfortunately, never do.

Well, without access to the full text of his study, we are speculating here

Indeed.

No, I wouldn't put it like that. Firstly, I'd guess the costs are not that different.

Taking travel into account probably not. Treatment wise it's cheaper.

Secondly, the SP takes one week, with an emphasis on changing your mental and physical habits for life. The SP has zero risk, but injections into the prostate do carry a risk, as we have seen. So which route do you go first, the conservative but safe one, or the risky "quick fix"?

A caveat emptor if ever there was one. Not justifying it, just countering the point you made.

For that you need to look at studies of the natural history and epidemiology of CPPS.

I have.

Outline for me how you'd design a double blinded study for the SP.

Eh... long term study comparing control subjects who practised, say, meditation and had Swedish massage against PR and TP treatment?

Don't know, but then it's not for me to do.

The Wise and Anderson study (PMID 16952676) states an average 5-month followup.

A HEADACHE IN THE PELVIS talks of a year to two years.