Trying Again

[HerMajesty]

Charlie,
Unfortunately the reality of the situation is, research is often a good 10 - 15 years behind practice...That is, something is getting good clinical results, and comes into favor, but it is a long time before anybody gets the motivation, and then gets the resources together, to prove it through controlled study. Unfortunately since PNE care was pretty much nonexistent 20 or so years ago, most of us who get help will NOT do so through avenues that are well supported with controlled studies. I am not saying this in defense of pelvic floor PT - just as a general fact...if you were to list all PNE treatment modalities, and then look at the body of literature, you might find a number of published case studies...but can you find enough controlled research to provide for an evidence based approach to PNE, with ANY treatment modality?

[Charlie]

Unfortunately the reality of the situation is, research is often a good 10 - 15 years behind practice...?

Well that may be the case but it does not provide an excuse for the lack of evidence for myofascial physical therapy for pelvic pain. Myofascial physical therapy has been used for pelvic pain for over 15 years now. Yet only in 2010 do we get the first ever controlled study.

What concerns me is that I have paid money to see PTs who claim a 90% success rate. Yet this study would appear to contradict those stated success rates. I can only assume they have made up their success rates and the fact that there was no follow up to track patients after I left confirms my belief.

I don't want to be too critical of PT , I think it is definitly worth trying and may well work. What I have a problem with is how it is often marketed as a proven treatment when this is far from the case. I think there is a need for greater transparency about the effectiveness of PT from physical therapists. When people are paying for example $150 an hour for a PT session and a PT is claiming a 90% success rates they should be aware they are paying for treatment which in actual fact has little evidence to support it.

if you were to list all PNE treatment modalities, and then look at the body of literature, you might find a number of published case studies...but can you find enough controlled research to provide for an evidence based approach to PNE, with ANY treatment modality?

You make a good point here and I agree with you. It's a shame there is not a clear cut approach to take to PNE. Hopefully that will change in the future.

[KC17]

I know that I did the suggested stretches for 4 days and wound up going from a relatively stable 2 pain to a 7. Since this started I've only had left sided pain;thanks to these stretches I now have equally as bad right sided pain. Woopie!

I had gotten off of all medications, was functioning relatively well, was starting to be able to sit comfortably with a cushion for longer than 10 minutes, and now this.



Krista

[A's Mommy]

Dear Krista,

Please see a PN specialist ASAP if you are getting worse with PT. I got so much worse over the 4 months 2x a week of pelvic floor PT that I remember in one session I just said "hey, if I really have an ENTRAPPED NERVE, is any amount of PT going to release it?" and when she said "no" I was done. Completely done.

Listen to your body. You should not go from a level 2 pain to level 7 with PT. Please don't endure the pain. I am living proof of that. PT before surgery for an entrapped nerve just is worthless. I'm not saying you have one, only a PN expert can diagnose that. I just know that with my experience, I declined so fast with the 2x a week of 4 months of PT. I WANT YOU TO FEEL GOOD AND NOT HURT FROM PT!!! I know how you feel; I used to walk out of PT, rather, HOBBLE out of PT in so much worse pain and I just kept slapping down the $20 copays for each visit. In my opinion, I see absolutely no benefit from PT if you truly have an entrapment. Until research proves otherwise, that's my opinion from personal experience. I know there will be benefit AFTER my nerve is released surgically, but until then, no way.

Praying for ya,

A's Mommy

[Karyn]

Hi Krista,
I agree - don't do anything that makes you feel worse. I understand you're thinking, though. I know you want to exhaust all options before considering surgery.
Just like AthenasMommy, my PT also told me I would benefit much more AFTER decompression surgery. This was a huge relief to me because I was feeling even more like a freak than I already did, wondering why the PT wasn't working for me. Please try something else and stop doing what doesn't work.
Wishing you the best,
Karyn

[Celeste]

Please...consider the PT option exhausted. You're throwing good money after bad. I mean that.

[ezer]

PT always made me feel better for a couple of hours and that from my very first session until session #100 2 years later. There was never any change or trend. At the end of the day it was very expensive pain management.
A's mommy, I think you PT's candidness is remarkable. I was told to keep doing it. To be patient. There were more trigger points to be found etc...
A waist of time and money.

[HerMajesty]

OK, this is where I step in and remind folks that PT is a very broad category...While PELVIC FLOOR / PELVIC CORE EXERCISE PT gave me mild temporary relief if I made it my full time job to keep at it constantly - 2 visits weekly, 2 -3 half hour exercise sessions daily, a weekly hour of professional trigger point release and countless hours of self-massage of trigger points at home (same areas over and over agian as the trigger points kept re-forming), HESCH METHOD PT MANUAL THERAPY, which is a form of joint manipulation, made me 75% better in 2 sessions, and after a 3rd session I NEVER had to do that OR the pelvic floor PT again.
These are the 2 kinds of PT I have had done - there are MANY other PT modalities as well.
I believe what most people here have had, and many are trashing, is the pelvic floor / pelvic core exercise PT. I think this modality DOES work quite well for some cases of interstitial cystitis, more generalized mild PFD, or other pelvic pain syndromes; less so for PNE. It is not a useless modality but a questionable one for persons with severe pudendal neuropathies.
Charlie I am HOPING and PRAYING to be able to someday present you with a prolific abundance of controlled Hesch studies...a few little things called money, IRS form 1023, Human Subjects Committee, etc are getting in the way at the moment...but we are trying! The research that is out there is produced because people jumped through hoops and tore down barriers, believe me. It is not as easy as saying, "oh, I guess we should go do some research".

[Karyn]

I believe what most people here have had, and many are trashing, is the pelvic floor / pelvic core exercise PT. I think this modality DOES work quite well for some cases of interstitial cystitis, more generalized mild PFD, or other pelvic pain syndromes; less so for PNE. It is not a useless modality but a questionable one for persons with severe pudendal neuropathies.

OK, Hermajesty - that's all well and good BUT ... this is where we're being sent and that's the treatment prescribed for us. I'm personally grateful that you were able to find Hesch and his treatment was effective for you. But those of us with PNE and/or severe pudendal neuropathies haven't had much success or relief from PF PT.
With the utmost respect (and love!),
Karyn

[HerMajesty]

This is true Karyn BUT...I suppose I am biased by my personal experience here...I was flailing around in the nightmare of jumping from incompetent neurologist to incompetent neurologist, being treated like I was crazy...after self-diagnosing online I pretty much arm-wrestled one of these guys to get a referral to a PT listed on the precursor of this site...1ST PRACTIONER WHO BELIEVED ME, 1ST PRACTIONER WHO NOTICED MY OBVIOUS, GROSS POSTURE DEFORMITIES, AND while what she could do for me herself was limited, she hooked me up with Hesch, with the marvellous PA who manages my case (meds, testing, etc), and has basically been responsible for getting me to all the right people at all the right times for care as she is THE well-connected pelvic floor person in town. Without her I think I would have given up hopping from ignorant Doc to ignorant Doc by now...don't know where I would be.
Also while these pelvic floor PT's are so far limited in what they can do for PN, they are the ones who are following the literature and continuing ed and will be the 1st to know what new biomechanical PN care is out there. MY pelvic floor PT could not help my underlying S-I problem, but after this weekend she will be able to help a lot more patients like me because she is hosting a Hesch Seminar at her facility and is going to get 16 hours of training in correcting pelvic joint dysfunction. I think it is a profession to watch, not dump on.