Health Organization for Pudendal Education

There are no other randomized studies. This is the only one we have and all we have to currently base a decision on. We have to accept that this is an unproven treatment approach. Even Dr Mary Pat Fitzgerald would have to accept that.

My point is this. The people who are claiming PT has worked are always currently receiving it. You yourself have stated that you are about to have a session of PT just now. This is pain management not a cure and even then it seems people must go to regular sessions.

I also had PT and felt better for a short while and would defend and recommnend it. I did that on the old forum. However the improvement can never be sustained. I combined extensive meditation and exercise with it to maximise the effect however this did not make much of a difference. This is the same with everyone I know that has tried it.

I am not trying to be confrontational and wish you the best. However we need to start asking these tough questions.

Wait, Charlie, yes, I have chronic pain, bad chronic pain... I use PT as part of my pain management.Bad connective tissue and trigger points can cause pain, and a short tight pelvic floor. But really, I'm trying to understand your point as I rarely read the arguments over on pudendal.info... cuz they were so intense. but are you telling me that people who I talk to to this day, who after not going to PT for over a couple of years, are they not cured? One big point I may have missed is this if you are talking about PN/PNE, versus PFD/PN, well then you may be right. These people were never diagnosed with PNE.

But, I'm not lying about the people I know that are living normal lives without PT anymore. I'm really trying to understand your response and I just don't. Are we to say that PT doesn't work if it doesn't cure us ? I take pain pills and I'm not always pain free? I'm getting confused here, and I'm an RN. I feel like you are trying to have a fight rather than a discussion.

Cora wrote: I feel like you are trying to have a fight rather than a discussion.

All I have done is raise questions. You have to ask questions in a debate.

What I am saying is that I am yet to meet a person who has seen top pelvic floor PT's and who is now cured and not receiving treatment. I have never once said you are lying in any of my posts so it's unfair to make that accusation.

In your first post you stated

I can tell you that there is both empirical data and patient data to support physical therapy

when I pointed out that there was only one randomized study your argument has changed to

I used to sit in waiting rooms with them in Chicago, go out to dinner with them and stand at hi-top tables, talk on the phone..as in now we are friends. I still correspond with one in Europe who is back to working full-time..., ( she was never on this site)

So your argument has changed from arguing that there is 'empirical data' to now what is 'anecdotal' evidence. I'm sorry but in my opinion that is a climbdown from your original argument.

Please do not take my comments personally. I am just debating with you.

The problem with PT is that it is marketed as a cure. My experience and your own would suggest this is not the case. I realize that you have said it is not a cure but PT's will give the impression they can make people pain free. It is also marketed as a 'proven' treatment. This is not the case.

My point is that we should inform people that this is an unproven treatment approach. It is no different from an alternative therapy. People are welcome to try it but they should be fully aware of this when they pay for expensive treatment sessions. I don't see that as a controversial point to make.

I have a question for you. When you went to see Rhonda Kotarinos did she send a form to complete a month after seeing her asking you to assess your pain levels?

Rhonda transferred my to a colleague, so no she did not send a form. However, when I failed to make continued progress, she thought that the long commute was interfering and I was best served by seeing her colleague who lives closer to me. I don't think Rhonda sends out forms though. I'm done for now- not much for debate.

Cora, It's horrible having chronic pain and I sincerely wish you all the best with your treatment and am not trying to deny your experience.

The reason I asked about the form is to question whether PT's are tracking their results. As you have said you received no form. If no effort is made to track patients how can PT's possibly claim certain success rates? They are not making the effort to see if the improvements they can bring about short term can be sustained. I have to wonder why they do not do this.

If PT's are claiming certain success rates to patients and charging over $150 an hour for a session then I feel as I'm sure many others do that there is a responsibility on these PT's to back up these claims with evidence.

totally agree.

Cora,
I am not trying to be confrontational either but I have been treated by some of the top PTs from 2004-2006 (all trained or in contact with Rhonda). I have met quite a few people while doing PT and 4 years later after having stopped, I can tell you that none of my contacts were cured by PT.
Those PTs all thought they could help me. I really liked them very much on a personal level but at the end of the day I spent a fortune on that failed treatment. I truly wish it would have cured me.

Cora, I'm glad we agree on something.

I notice in your signature you take MS Contin ( Morphine). You also take Cymbalta a drug indicated for the management of peripheral neuropathic pain. How much success do you credit to taking these medications as compared to the Physical therapy?

Your signature would indicate that you still take these meds as it states '' do well with lifestyle modifications and meds.'' Are you satisfied that after seeing three PT's you still require these medications?

I fully realize these questions are 'confrontational'. I really feel though that these questions need to be asked. They are questions that any Dr treating chronic pain would ask as well.

Well, you got me thinking now that they do have to substantiate more, publish more, follow-up more and I have even made those suggestions long ago. as it leads to all this guessing and not really knowing other than through personal experience or anecdotal from the pt's. I can't say how much is my meds versus PT cuz I've been on the meds the day the pain emerged. I know my pain med use went down with chronic PT and it has gradually gone up slightly very slightly since off PT, but my symptoms are worse since off PT. But I still have to say I know people cured and you could meet them too. Nighty night. I plan to ask patients on HP what their PT's do for documentation and follow-up as that is so relevant.

Cora wrote:Well, you got me thinking now that they do have to substantiate more, publish more, follow-up more and I have even made those suggestions long ago. as it leads to all this guessing and not really knowing other than through personal experience or anecdotal from the pt's.

I agree

Thanks for responding to those questions Cora.

Best of luck with your treatment.