Health Organization for Pudendal Education

CPPS-Admin, I know perfectly what the VAS scale is. Believe me, I had to fill up many of those charts.

A pain reduction of 1 on the VAS is pitiful. We were told by David Wise that we would become pain free with perseverance. Pain free is not a "1" in pain reduction.

Regarding that new study, David Wise advises you during the clinic to give up pain medication!! He says that it is key to a full *ahem* recovery because pain medications interfere with doing "paradoxical relaxation". No wonder those patients stopped taking it.

They did not stop pain medication because they felt better. They stopped or claimed they stopped (easier said than done (1) --I am sure they were not given a 12-panel drug test) because David Wise told them to do it.

What happened to the 84 people that were dropped from the study...?????
They were sent questionnaires but did not respond. That's pretty typical for such post-treatment questionnaires.

Not exactly. They were all over us to return the questionnaire at the 6 months mark with incessant and annoying phone calls. I returned my questionnaire saying that I did not improve. I then got the 2nd questionnaire 18 months later but never got a reminder this time to return it. How convenient for them to be able to eliminate someone that was probably not going to help their statistics.

‘So going down one grade on that scale is very significant, especially after only 6 months

No, it is not impressive. They stopped improving at the 6 months mark. What you get after 6 months is as good as it gets. The study clearly states it is the same score after 23 months.

Now it is clear some patients, such as you, are complete non-responders.

I should have been. The clinic is clearly targeted to people like myself. I am the perfect target demographic (after all I recovered with mind-body practice). Instead, Dr. Rodney Anderson of Wise-Anderson protocol fame diagnosed me with PNE, an absurd diagnostic (which also highlights the bizarre dissonance between Wise and Anderson).

But the fact regarding the Wise Anderson protocol is that PT is useless (it is pain management only) and paradoxical relaxation does not address your emotional baggage.

I am not being facetious. I do not know a single person that has recovered with the Wise-Anderson protocol. Even your success stories list, CPPS-Admin, is ultra short (and I know 2 patients from the list that have relapsed since).

(1) It took me 2 months to taper off only 30mg of oxycodone and another 5 months of tough recovery to feel like a human again so it seems dubious to report that people discontinue seamlessly their pain medication. It is equally tough with SSRIs and other types of medications.

ezer wrote:A pain reduction of 1 on the VAS is pitiful. We were told by David Wise that we would become pain free with perseverance. Pain free is not a "1" in pain reduction.

That was the median reduction. Quite a few people had more than 1 point. DW became pain free after applying his system for a few years, not months, and I have seen many other men do the same at my forum. I am very skeptical by nature, but I have been convinced that the mind-body treatment called the Wise-Anderson protocol does indeed work, not least because I applied a very similar treatment protocol to myself (one I worked out intuitively myself), long before Dr Wise came onto the scene, and cured myself too (in conjunction with dietary modifications).

Regarding that new study, David Wise advises you during the clinic to give up pain medication!! He says that it is key to a full *ahem* recovery because pain medications interfere with doing "paradoxical relaxation". No wonder those patients stopped taking it. They did not stop pain medication because they felt better. They stopped or claimed they stopped (easier said than done (1) --I am sure they were not given a 12-panel drug test) because David Wise told them to do it.

Pain meds, specifically opioids, can actually cause pain. They are mast cell degranulators, and I always advise my forum members to stop taking them as well. They end up causing more problems than they are worth.

What happened to the 84 people that were dropped from the study...?????

They were sent questionnaires but did not respond. That's pretty typical for such post-treatment questionnaires.

Not exactly. They were all over us to return the questionnaire at the 6 months mark with incessant and annoying phone calls. I returned my questionnaire saying that I did not improve. I then got the 2nd questionnaire 18 months later but never got a reminder this time to return it. How convenient for them to be able to eliminate someone that was probably not going to help their statistics.

I don't understand the point you are trying to make here.

1. I said that a 60% response rate is typical
2. You said that you responded to your questionnaire (you may not have been in this study's cohort)
3. You said that you were pestered by phone to return the questionnaire
4. The study does not describe phone call follow-ups, so it was probably not part of the methodology of that study (another sign you may not have been part of the cohort)
5. You said you received a second questionnaire but never responded and never received more phone calls
6. The study did not send out a second questionnaire at 18 months (another sign you may not have been part of the cohort)
7. You now assume, because you received no more "annoying" calls, that you were deliberately eliminated from the studies findings, which appears to be an illogical and paranoid conclusion

So going down one grade on that scale is very significant, especially after only 6 months

No, it is not impressive. They stopped improving at the 6 months mark. What you get after 6 months is as good as it gets. The study clearly states it is the same score after 23 months.

No, the study does NOT state that. The study shows a clear continuance of improvement in NIH CPSI scores
So you are, once more, completely wrong.

Now it is clear some patients, such as you, are complete non-responders.

I should have been. The clinic is clearly targeted to people like myself. I am the perfect target demographic (after all I recovered with mind-body practice).

Please describe the form of mind-body practice that worked for you. Clearly, paradoxical relaxation was not quite right for you. Some people have deeper psychological issues that need to be worked on, as in your case.

But the fact regarding the Wise Anderson protocol is that PT is useless (it is pain management only) and paradoxical relaxation does not address your emotional baggage.

PT is not useless because it can relieve the pain and stop the neural windup that leads to allodynia and hyperalgesia. That's the "body" part of the treatment. But it does have to be combined with an effective "mind" aspect, and I do agree that simple relaxation training only addresses the needs of some patients, not the more complex cases where a lot of "emotional baggage", to use your phrase, needs to be worked through.

So at least we agree on something!

I am not being facetious. I do not know a single person that has recovered with the Wise-Anderson protocol. Even your success stories list, CPPS-Admin, is ultra short (and I know 2 patients from the list that have relapsed since).

I have lost count of the number of people who report success using the Wise-Anderson protocol, ezer. There are so many that a year or so back I stopped moving their stories into the "Success Story" forum.

That was the median reduction.

Yes, I know what a median is. No matter how you look at it, an improvement by only 1 point of the median is pathetic. Of course some people got better by more than 1 on the VAS so that means that others did not improve or got worse.

Pain meds, specifically opioids, can actually cause pain. They are mast cell degranulators, and I always advise my forum members to stop taking them as well. They end up causing more problems than they are worth.

Yes, you are correct. The options are very limited though and during this CPPS nightmare, you want any relief you can get and you just don't care about the consequences.

I don't understand the point you are trying to make here.

What I am trying to say is that they were eager to get my 1st report at the 6 months mark. My first report being not positive, they were much less eager to get my 2nd report at the 2 year mark. They never called me to turn it in.
I probably was part of the study. The questions definitely match what was reported.

No, the study does NOT state that. The study shows a clear continuance of improvement in NIH CPSI scores

The study says the following:

Median pain score measured with a visual analog scale decreased from 4 (out of 10) to 3 at follow-up, urinary domain scores decreased from 10.5 (out of 28) to 6, and sexual health domain scores decreased from 5 (out of 20) to 3 (P < 0.001 for all; higher scores represent greater severity.)
Improvements were sustained in patients with a long-term follow-up of 23 months.

Nowhere did I read that the VAS improved over 23 months. Maybe the WAP taught people to deal better mentally with pain which is valuable. That would be reflected in the CPSI score that tries to assess some of the comorbidities associated with CPPS.

So at least we agree on something!

I think we agree on PNE surgery too:
http://www.pudendalhope.info/forum/view ... =44&t=6327
http://www.pudendalhope.info/forum/view ... 937#p47937

My responses continue here
http://www.pudendalhope.info/forum/view ... 749#p48749

Could you please explain how the Wise Anderson survey was carried out? Was it carried out by by independent researchers or was it carried out by Wise Anderson themselves, or by staff employed by them?

Were the results in any way independently verified?