List of known pelvic floor practitioners

[Hepcat]

I would suggest it's nearly time to compile a list of known pelvic floor practitioners, with their permission of course.

Unfortunately, it would prob also make it too easy for the detractors to point the finger of distrust in terms of postulates about referral kickbacks or treatment bias, so I offer the suggestion with some mixed feelings...

[TK]

I think that Hepcat has a good idea here.

The list would have to include Urologists (and other physicians) who know know how to identify the problem as well as physical therapists.

As long as we went about this in a careful and ethical way, I think that the good would far outweigh the "problematic side". Any lists and information could be accompanied by the proper warnings and disclaimers.

We could work out protocols to check and screen information to try and screen out people whose primary motive is to profit from the trend.

[webslave]

Start with Stanford and then Jerome Weiss.

[TK]

PERMISSONS:

Does anyone have clear ideas as to what would be the legal and ethical considerations involved in permission to post the names of physicians/therapists.

Example: Dr. David Wise personally gave me the name of an excellent therapist in New York. And based on positive experience, I would of course recommend them.

Would I proceed by:

a) writing a letter, with text of my "recommendation" asking them to approve it for posting?

b) making them aware of opportunity to post, and suggesting they do so themselves?

SCREENING
Beyond the pioneers like Doctor's Wise and Weiss, what would be the screening process? Obviously medical credentials, perhaps membership in a professional society (I think there may be an assoiciation of Pelvic Pain Therapists) but also recommendation by either a (longstanding) forum member or another practitioner who has already been on the list?


LOGISTICS
Don't want to further impose on stalwart Administrators, not to mention the Webmaster (who has earned the title...as surely as Muhammad Ali will always be "the Champ")

But once listings are established, how should they be submitted and posted? Presumably we need a list organized by Country and Region.

Ideas?

[latte]

There is a list on the IC website for pelvic floor physical therapists. Just type in Julie Sarton and the IC network list is listed on the web. She is the PT that Dr. Weiss referred me to in Mission Viejo.

[TK]

Excellent! There is a section for therapists and another for physicians.

Laws may vary in different countries, but in most or all US States, you need a referral from a Doctor to get into physical therapy. And ideally, the Doctor has some degree of involvement in at least monitoring ongoring treatment.

In my case, I had to do this "backwards". I found the therapist, then convinced my Uro (who had no opinion one way or the other) to give me a referral. If I had been unable to get this referral, the physical therapist had a list of several physicians who were better informed and could provide the referral.

I BELIEVE THAT EVERY ONE OF US WHO HAS HAD A STRONGLY POSITIVE OUTCOME FROM THIS KIND OF TREATMENT has an absolute obligation to take an active hand in getting this information to the people who need it.

The IC network apparently allows for patient recommendations and I suppose that's fine -- although it seems to me that encouraging the practitioner to post or at least asking their permission is the more ethical course.

The hardy souls who administer this site can decide whether there is greater good in maintaining a similar list here, or whether people should be directed to the IC list (or other resources).

BUT LET'S ALL ACT NOW!

Consider this: over the course of the last several years, any number of men were getting successful treatment . We didn't hear about it because only a handful were willing to shout from the rooftops and perhaps their voices could not be heard in the din of competing theories and the confusing range of symptoms.

LET'S ALL SHOUT FROM THE ROOFTOPS!
Make the necessary phone calls; send the necessary emails; get those listings posted!

This may not be "the complete and final answer" for everyone I think that many of us agree that this has greater potential than anything we've seen recently.

[webslave]

Note to my colleagues who run this website: I am snowed under with work for several clients right now. Any input in this regard would be helpful.

[MS]

Well, I've been on the phone quite a bit, and sent several emails to various urological and pain "associations" and "societies." No one seems to want to give a list of pelvic floor or chronic prostatitis / chronic pelvic pain syndrome specialists.

I did find one good site though: Pelvicpain.org. The site has a good search engine (several of my treating physicians are in there). The search engine lists doctors, physical therapists, nurses, psychologists, and even OB/GYNs that specialize in Pelvic Pain:

http://www.pelvicpain.org/providers/find_provider.aspx

The main site looks pretty informative too:

http://www.pelvicpain.org

MS

[TK]

For those who have think that treatment for Muscle Tension Disorder might well help them, but have difficulty finding practitioners in their town or region, here's somethiing to consider.

The therapists who helped me in New Yorkwas recoommended by Dr. David Wise (co-author of A Headache in the Pelvis.)

These therapists also treat all kinds of incontinence issues and rehabilitations after surgery, etc. People who are well trained to treat the pelvic floor issues related to incontinence, etc. are likely to be well informed about trigger points, etc. etc.

Yes, you do want to be extremely carefuly in selecting a practitioner. And of course it would be ideal if you could find a practitioner by way of a specific and credible recomendation on the order of "Yes, Dr. X or Therapist Y has treated numbers of people with chronic prostatitis / chronic pelvic pain syndrome and their protocols are similar to Stanford". That would be ideal.

But It bears repeating that my successful treatment involved some departures from the Stanford Approach and others have also reported good results from working with knowledgeable physiotherapists.

So if you live in a particular city and you start calling around and asking, "who is good at treating Pelvic Floor Muscle Disorder", you might not find much.

But rephrase that question to someone who is knowledgeable about the local medical scene: "Are there any physicians/ therapists who are known to be good at treating incontinence?".

In the U.S. (and perhaps other places) Medicine is for better or for worse market-driven.
Senior Citizens as a group are more affluent and have better insurance plans. So there is a financial base that will sustain practices that provide treatment for incontinence. People who specialize in the treatment of incontinence are very likely to have a good understanding of pelvic floor issues. And anyone who is known to be highly competent in providing physical therapy to senior citizens is likely to be careful and incremental in their approach to treatment.

Another approach along the same lines: I have read that, while Urologists as a group are not known to be "current" on these issues, Proctologists are more familiar with something called Proctologia Fugax (forgive me if spelling is off). Essentially, this condition involves the same underlying causes. So checking with a good proctologist might yield some good information.

Do be careful! Ask all the questions you need to ask. Many of us find that physical therapists are much more communicative than physicians.