UCPPS - Prostatitis, Interstitial Cystitis Forum

Lets be honest lads if was not for the book( by reading it you know this is your problem or not) I would still be seeing my Gp and uros and maybe swallowing antibiotics

The more therapists that try and treat this the more info you will be able to find on their successes.

For me I'm off to see Bill Taylor who has been good for some and not for others but even Bill admits he learning as he goes along and is probably better now than at first.

For £75 for an hour and half session hit or miss its worth is.

Kay Crompton in London is another therapist who treats this but until I see evidence of success I will stay away.

Problem is it takes sufferers to go to all therapists to find the good ones ( human guinea pigs)

I agree with Sleeper's observations. I also think that Webslave is spot on in the last post.

I have believed for a while now that men do get better over time if -

* they stop worrying about the condition which prevents the perpetuation of the condition through the pain-anxiety-tension cycle.
* they begin tackling the specific causes of their condition (much self honesty and analysis is required here)
* they have a constant, disciplined, thourough approach to their treatment plan whatever it may be.

I for one went 3 months pain free after doing trigger point work internally and external on myself alongside stretching daily and mediation 3 times a week. I have now started to resolve a flare following this 3 month period by massaging my levator ani muscles the night before last. My pain has reduced by 80% since.

This is why I recommend to anyone self treatment using AHIP and the Trigger point work book as a guide. So far I have resolved very painful TPs in my left and right obliques (tennis ball massage); my psoas muscles (all around my belly button); my internal perinea using my massage tool.
And as I have said my levator ani muscles using my massage tool in a hot bath. I, in my limited knowledge, recommend self treatment to anyone. Obviously, the Stanford/Wise-Anderson Protocol is the best option but I can't get there!

Interesting responses. As for the pathogenic theory, well looking at Dr Shoskes work it seems that some long term sufferers have benefited from antiobiotic therapy when combined with massage - 9 out of 54 patients with a median symptom duration of 3.5 years responded to this treatment. Of course, that's less than 20% of cases and I suspect some of them will have relapsed but it does lend some limited credence to the theory that some men have a pathogenic etiology. As a general cause though? No, absolutely not.

As a fairly intelligent person I consider it necessary to weigh all the options and try everything that has good, research based results behind it. I tried antibiotics because up to 60% of men respond to them in early stage CPPS. They didn't work. I tried PT because it has helped up to 75% of men with later stage CPPS. It worked a little. I had surgery because based on my videourodynamic research showed excellent results. It worked well. I take Quercetin, MSM and Glucosamine and Chondriton because they've been shown to work for some people. I don't know if they're helping or not yet. I think they are but it could just be the passage of time.

I firmly believe this is a syndrome not a singular disease and that what works for some people will not work for others. I do not believe in hunting down witch doctor like 'cures' which have no published results and confirmed success rate but I do believe in trying those that have been shown to be effective for others - and by that I mean in published research. I think it is foolish to fixate on one treatment as a catch all. Yes, PT will work for some but it's not a silver bullet. Nothing is.

If we had a whole lot of studies to confirm Dr Shoskes's findings that a small subset of men are cured with antibiotics and massage, I'd be more inclined to support that idea, but as it is, there are no confirmatory studies from believable and respected Western centers to back that up. While I am very respectful of the work Shoskes has done, especially in the field of phytotherapy, he also has some work, such as this study, and his work on "nanobacteria", which is scientifically isolated, unsupported and unconfirmed. On the other hand, we have a number of big studies showing bacterial counts to be higher in controls and antibiotics to be useless... that is why this site will not allow the constant and obsessive discussion of infection that has dominated this area for decades without leading to any significant advances in treatment ("Dr" Song, Polacheck and Feliciano notwithstanding).

Sleeper, unfortunately your operation was not an isolated experiment that allows you to make definite conclusions about whether it was key to your partial recovery or not. You chose to use various other forms of treatment while recovering from the operation; any of these treatments could be the thing that helped you, especially Quercetin, which in my case made at least a 30% difference to my symptoms.

Sleeper wrote:I tried antibiotics because up to 60% of men respond to them in early stage CPPS.

Where did you get that figure? Are you referring to the temporary anti-inflammatory effects antibiotics are well-known to have?

Now as to whether this is a syndrome with multiple causes or a single disease, this is my position: chronic prostatitis / chronic pelvic pain syndrome is a single disease, like migraine, that may have numerous triggers and exacerbating factors.

• Is it genetic? Probably yes, based on work of Dimitrakov and others.
• Is anxiety a likely factor? In most cases, yes.
• Do sufferers have a tendency to unconsciously tense their pelvic muscles? Yes, they do.
• Is allergy/atopy a factor? In a subset of unknown size, yes. Studies are lacking.
• Could there be a underlying defect in the CNS of patients? Yes, there could be, related to the genetic work above, and again, studies are lacking.
• Do all patients develop trigger points? No, it seems that even Tim Sawyer cannot find TrPts in some patients, and one wonders whether these people have some completely different problem (see the possible differential diagnoses). However, the vast majority of patients do have trigger points and painful spasms of the pelvic muscles, although not all PTs are able to isolate them, especially female PTs, with their short and relatively weak fingers.

Nobody here has fixated on any one treatment for this disease/syndrome, especially not me. You'll see me recommending dietary modification, Elavil, ejaculation techniques, stress avoidance, quercetin, etc etc ... there is a long list of helpful strategies. However, I think the Stanford/Wise-Anderson Protocol, if you are able to access it, is the most useful place to start, and for most people who attend it forms the basis for a long-term recovery.

webslave wrote:If we had a whole lot of studies to confirm Dr Shoskes's findings that a small subset of men are cured with antibiotics and massage, I'd be more inclined to support that idea, but as it is, there are no confirmatory studies from believable and respected Western centers to back that up.

Just as there are currently no confirmatory studies to back up the use of Quercetin other than Shoskes' original one

http://www.ncbi.nlm.nih.gov/sites/entre ... s=10604689

Yet it works for some.

While I am very respectful of the work Shoskes has done, especially in the field of phytotherapy, he also has some work, such as this study, and his work on "nanobacteria", which is scientifically isolated, unsupported and unconfirmed.

Again, not unlike the study on Quercetin. It may have been a double blind test but it was small and still remains the only one out there.

On the other hand, we have a number of big studies showing bacterial counts to be higher in controls and antibiotics to be useless... that is why this site will not allow the constant and obsessive discussion of infection that has dominated this area for decades without leading to any significant advances in treatment ("Dr" Song, Polacheck and Feliciano notwithstanding).

I have no intention of discussing infection because:

1) It's against the site rules and I respect those.
2) I think it's a fruitless discussion. There is evidence for and against but, ultimately, it comes down to what works for the individual. I certainly don't buy the theory that we're all infected with Chlamydia as that's clearly nonsense.

But enough. Like you say, this is not the place to discuss these theories.

Sleeper, unfortunately your operation was not an isolated experiment that allows you to make definite conclusions about whether it was key to your partial recovery or not.

Considering I wasn't doing anything else immediately after it, I felt a lot better and could pee about five times better I respectfully disagree.

Before undertaking the operation I downloaded every study on bladder neck incision and its efficacy so I thoroughly understood what to expect. The defining ones are these (I have the full articles, not the abstracts):

http://www.ncbi.nlm.nih.gov/sites/entre ... s=12783172
http://www.ncbi.nlm.nih.gov/sites/entre ... ds=7966675

You chose to use various other forms of treatment while recovering from the operation; any of these treatments could be the thing that helped you, especially Quercetin, which in my case made at least a 30% difference to my symptoms.

I was using Quercetin long before the operation. It did not help although admittedly it was a generic brand, not Quercetin.

Where did you get that figure? Are you referring to the temporary anti-inflammatory effects antibiotics are well-known to have?

PMID: 17509180

The full article shows about 55% responding to antibiotics. This is a figure also quoted by other urologists. Remember, we're talking about the first few weeks to months of the syndrome. After that they're probably not going to help.

Now as to whether this is a syndrome with multiple causes or a single disease, this is my position: chronic prostatitis / chronic pelvic pain syndrome is a single disease, like migraine, that may have numerous triggers and exacerbating factors.

Again I respectively disagree. The symptoms are so wide and variable as are the treatments to suggest this to me.

Nobody here has fixated on any one treatment for this disease/syndrome, especially not me.

Not suggesting you are. You are fixated on what isn't an effective treatment but with pretty good reason.

You'll see me recommending dietary modification, Elavil, ejaculation techniques, stress avoidance, quercetin, etc etc ... there is a long list of helpful strategies. However, I think the Stanford/Wise-Anderson Protocol, if you are able to access it, is the most useful place to start, and for most people who attend it forms the basis for a long-term recovery.

I agree although I don't think it has to be SP in particular.

Sleeper Service wrote:Just as there are currently no confirmatory studies to back up the use of Quercetin other than Shoskes' original one. Yet it works for some.

Two points:

1. It works for some and not others does NOT mean that the people for whom it works have a different disorder than the people for whom it doesn't. This was well debated in the past, with input from Shoskes, to show that genetic variability of patients is the underlying cause. This is not the only drug/chemical therapy that is useful or not useful depending on the patient's own genome rather than any properties of the disease or drug.
2. You have to remember that there are studies supporting other phyto-pharmaceuticals in the treatment of CPPS. I refer here to cernilton (PMIDs 1529825 15638027 and 16413333). Also, it is obvious that because the good Dr Shoskes was right about quercetin does not mean he is right about everything.

Considering I wasn't doing anything else immediately after it, I felt a lot better and could pee about five times better I respectfully disagree.

I'm sure you could pee better after having tissue removed from your urinary tract, and I will not argue with you about this, just point out that you had a period after the op when you thought you were cured, then you became somewhat crestfallen when symptoms returned, now you feel it was very helpful. Whatever, it seems to have worked for you, although my experience of the many men who have tried surgical intervention for chronic prostatitis / chronic pelvic pain syndrome is that it usually either makes no difference, a minor improvement or a worsening of symptoms.

Sleeper wrote:The full article shows about 55% responding to antibiotics. This is a figure also quoted by other urologists. Remember, we're talking about the first few weeks to months of the syndrome. After that they're probably not going to help.

The very large study by Nickel et al showed that initial improvements on antibiotics subsided after a few weeks and were non-existent after a few months. Bottom line: if you have CPPS, antibiotics will NOT cure you, no matter when or for how long you take them.

Sleeper wrote:

webslave wrote:Now as to whether this is a syndrome with multiple causes or a single disease, this is my position: chronic prostatitis / chronic pelvic pain syndrome is a single disease, like migraine, that may have numerous triggers and exacerbating factors.

Again I respectively disagree. The symptoms are so wide and variable as are the treatments to suggest this to me.

Variable symptoms and treatments do not mean that we are dealing with different disorders here. Use Occam's razor. Many men find these seemingly disparate symptoms morphing and merging over time, until they find, like I did, that they experience most of the wide range of symptoms over time.

webslave wrote:I'm sure you could pee better after having tissue removed from your urinary tract, and I will not argue with you about this, just point out that you had a period after the op when you thought you were cured, then you became somewhat crestfallen when symptoms returned, now you feel it was very helpful.

To clarify: I hoped it had cured me, I was disappointed because some symptoms did not go away (they didn't return because they never left) and I always felt it was responsible for improving some of my symptoms.

The bottom line is I was off work for 14 months, in constant moderate to severe discomfort and generally not getting any better. After the operation things improved - I could pee again, didn't constantly feel a moderate to strong urge to urinate and could return to work. Since then progress has been slow but it has been made.

I think the key thing for people to note is that my circumstances are unusual because there was a clear obstruction at the bladder neck - my Uro described it as "significant overgrowth" - which is not typical of chronic prostatitis / chronic pelvic pain syndrome and people should not therefore be looking at surgery at all unless there is a clear indicator for it. However, I do believe that without the operation I would not have a realistic chance of improvement.

How refreshing to have people discuss this controversial syndrome in an in-depth manner without resorting to flaming accusations and juvenile insults. And no deleted posts to boot! And the arguments are made on the basis of logic, thoughtful deduction and documented scientific studies.

Well done gents!

Great thread....

I have to chime in here, since I went to the clinic.

I tried internal on myself and even tried two other PTs, one Dr. Wise recommended as she spent time with Tim. Neither could treat me properly, which left me feeling hopeless at times. As I've said before, within 5 minutes of meeting Tim he had found many of my trigger point areas. Symptom relief was immediate from that first visit with him, though they came back, as this nasty thing tends to do. But, that showed I could be treated.

I've come a long way from the clinic, which is one year to this week, I believe I started December 12, 2006.

Going to the clinic was a must for me. There is no doubt in my mind I would not be where I am today. No PT could put me on the right path to treating myself. I was just mimicking their bad practices, so I was not getting better.

I must admit, they say at the clinic the relaxation is the biggest part, but for me I still struggle with this. I do about 20 mins per day, it should be more I admit. But, I dont feel I get much out of it compared to the trigger point and stretching work.

Either way, the clinic was invaluable to me.

Dr. Wise answered emails and my phone calls before I ever went to the clinic, and he never pushed it either.

Ss

I have no doubts about that, scooby. For some people it will most definitely work - in fact probably the majority who have evidence of TPs will benefit.

How would you describe your symptoms in terms of severity these days on a scale of, say, 1 to 10 and what improvement - again on a 1 to 10 point scale - do you attribute to SP?

scoobysnacks wrote:I have to chime in here, since I went to the clinic.

I tried internal on myself and even tried two other PTs, one Dr. Wise recommended as she spent time with Tim. Neither could treat me properly, which left me feeling hopeless at times. As I've said before, within 5 minutes of meeting Tim he had found many of my trigger point areas. Symptom relief was immediate from that first visit with him, though they came back, as this nasty thing tends to do. But, that showed I could be treated.

I've come a long way from the clinic, which is one year to this week, I believe I started December 12, 2006.

Going to the clinic was a must for me. There is no doubt in my mind I would not be where I am today. No PT could put me on the right path to treating myself. I was just mimicking their bad practices, so I was not getting better.

I must admit, they say at the clinic the relaxation is the biggest part, but for me I still struggle with this. I do about 20 mins per day, it should be more I admit. But, I don't feel I get much out of it compared to the trigger point and stretching work.

Either way, the clinic was invaluable to me.

Dr. Wise answered emails and my phone calls before I ever went to the clinic, and he never pushed it either.

Ss

That was my experience also - the highest quality treatment combined with integrity.

I'm beating you on the relaxation front by the way (averaging 1 hr a day), but you'd beat me by a mile in the gym at the moment judging by your photos! I found that the relaxation took time to bear fruit, but with time it does make a big difference.

Sleeper Service wrote:I have no doubts about that, scooby. For some people it will most definitely work - in fact probably the majority who have evidence of TPs will benefit.

How would you describe your symptoms in terms of severity these days on a scale of, say, 1 to 10 and what improvement - again on a 1 to 10 point scale - do you attribute to SP?

Severity Id say 1-2. Its more of a damn annoyance, I'm not in substantial pain. Usually sitting is just enough to know there is some minor inflammation in and around the anal sphincter. Still the most annoying symptom which occurs probably 20-30 of the time is a small spasm when I'm trying to relax the floor to take a piss. Think of a very mini orgasm spasm, thats what it feels like anyways. If I could get rid of that full time, the other stuff would be nothing.

I would say before the clinic it was a 5-6, 100% of the time when I pissed it spasmed and sometimes quite damn hard too, I used to call it a "lock-up" because thats what felt like was happening, everything just seized up then released.

I do believe that if I could quit work and just relax, golf, exercise, focus on things that are completely stress free I could diminish my symptoms even more. Sitting is a big problem for me, relatively speaking.

But, without the clinic I would not be able to self treat myself properly, and thats the total truth. The treatment has allowed me to do the things I enjoy, and thats important.

Ss

Sounds pretty good, scooby. Incidentally, a hiccup at the start of peeing or shivers at the end aren't that uncommon.

As for sitting, have you got a donut cushion? I have one and find it helps a lot. Mine's the Theraseat - it's a complete ripoff but it looks like a normal cushion which is why I got it.

I totally agree with Mark here. While you can get good treatment from other PTs around the world, I don`t think a lot of them REALLY understand the complexity of CPPS. I believe many of them treat this as they would treat someone with tense muscles in the neck etc. And they miss out on perhaps the most important thing, relaxation and calming the nervous system. I have seen Bill Taylor and done internal work on myself regularly for over three years now and as a result my pelvic muscles have become way more loose and I can`t feel the knots and fibers any more. For me, my levators feel more like the inside of my mouth with just smooth tissue. Having said that, if I get sloppy with my relaxation methods, they pain is right there again. When I start sucking in my abs and holding up the pelvic floor, it`s just a matter of hours before the pain is right there and I feel like I just turned time 4 years back. But then when I just let my stomach out, it automatically relaxes the whole area and the pain goes away rather quickly. So this is really they key for me and that`s why I am 95 % better than what I was four years ago.

Seeing Bill definitely helped me, but for someone who has not had chronic prostatitis / chronic pelvic pain syndrome themselves, it is hard to understand the psychological aspects of this. Before I got this, I would sort of laugh at people with anxiety problems or muscular pain. I though it as just an excuse for something. Now, I know first hand what it is like. Therefore, with David Wise as someone who has been through hell with this condition, I think this really makes the difference. I truly believe that this man has found his mission in life and we should all be grateful for the work he has done. And I don`t think paying 4000 dollars is a lot for essentially getting your life back. At least that`s the case for several of the men he has treated.

I don`t know if you know this, but there is a guy by the name of John Pearsalls, who I believe is Australian, who travels around and treat chronic fatigue syndrome. He has gotten a lot of media attention in Norway recently for charging 25 thousand dollars for his treatment. And he demands for his patients to be silent and not go into detail about the treatment with regards to the press.

I think that puts things in perspective!!