Trying Again

[KC17]

Hi everyone,

I've been lying low lately and haven't been to visit the site in quite some time. I've been in an unusual flare the last few weeks and it has left me, unfortunately, in no mood to get on the computer.

I attempted physical therapy about a month and 1/2 ago, but I only went twice...got bruises...increased pain...and chickened out. ALL EXTERNAL TOO! I'm considering going back though, because I'm afraid I didn't give it a fair chance (the increased pain really scared me). I'm just wondering if this is a good idea. I mean is it normal to flare so horribly after each session? How long should I tough it out?

I really just don't want to cause more damage....I would be grateful to hear of others experiences.

Hugs to all,

K

[Violet M]

K, what types of therapy is your PT doing and do they have experience in treating people with PN? If it's leaving you with bruises it sounds like it could be a bit too intense. The only type of PT that left me feeling worse (before surgery) was the internal stuff and I didn't continue it because I didn't see how it could be helping when it made me feel that awful.

[Charlie]

PT can be worth a go but bear in mind there is no real evidence that it works. PT themselves make lots of grandiose claims about success rates but the PT's I have seen have never made any attempt to follow up the progress of their patients so I have no idea how they have come to decide upon these claimed success rates. There has only ever been one controlled study of myofascial type PT for pelvic pain and the results were disappointing, the subjects were also tracked over a short period of time. A lot of people will get short term of relief from it but often end up going back for more and more PT which can be very expensive. The durability of the effectiveness of PT for pelvic pain is unknown.

[KC17]

Violet, she is PN aware and I actually found her off of this site. She just did some myof. release on my buttocks and around the anus, she also worked on my si joint some which is hypomobile.

Charlie, that's what I was afraid of.

[HerMajesty]

When I was in pelvic floor PT, my external trigger points were so bad that I did get severe pain and bruising in the area being worked (abdomen, thighs, etc), but it was obviously worth it to me because I had developed neurogenic bladder as the last stage of my PN and I would walk out of there sore and beat up, but the bladder would feel GREAT. Soft tissue PT had a positive impact on my bladder but not my neuropathy symptoms - however it did not INCREASE my neuropathy symptoms. SIJD treatment, which is also PT, greatly improved both.
I tend to lean towards listening to my body as I have never had a succeessful "treatment" which INCREASED the problem I was trying to treat. So, if you are talking about being sore and bruised from external trigger point work but no difference yet in PN, I would suggest giving it a little longer. But, if PN symptoms are actually increased, I would say no. I keep hearing about how sometimes you have to get worse in PT before you get better, BUT...is there ANYONE here, or anyone who knows anyone, who actually had their PN exacerbated and then improved, by their PT just continuing the exacerbating techniques until some kind of corner was turned? Until I hear it from somebody with that experience, I don't believe it.

[Celeste]

BUT...is there ANYONE here, or anyone who knows anyone, who actually had their PN exacerbated and then improved, by their PT just continuing the exacerbating techniques until some kind of corner was turned? Until I hear it from somebody with that experience, I don't believe it.

Quoted for truth.

[Charlie]

I keep hearing about how sometimes you have to get worse in PT before you get better, BUT...is there ANYONE here, or anyone who knows anyone, who actually had their PN exacerbated and then improved, by their PT just continuing the exacerbating techniques until some kind of corner was turned? Until I hear it from somebody with that experience, I don't believe it.

As Celeste has already quoted , well said.

KC17 don't be too disheartened. As Hermajesty made clear in her post she was helped by PT. I am sure some people are. I would say though that if you have nerve entrapment it will only bring temporary relief.

As hermajesty also said listen to your body. It may well work for you.

The danger is people keep going back to PT as they cling on to the hope it offers them. If after a few months you can see no sustained improvement I would give it up and stop wasting your money. As Franklin once said

The definition of insanity is doing the same thing over and over and expecting different results.

[pomegranate]

I've been doing weekly, sometimes twice weekly PT since June and am seeing improvement. Now, I make no claims as to the lasting impact of PT, as I haven't yet ended treatment and been able to look back and analyze. But weekly PT keeps my pain actually quite manageable.

Unfortunately, it's very expensive and time consuming to pursue PT as purely a pain management technique. It's yet to be determined whether PT is treating my pain, or just managing it. Of course, my physical therapist claims we're making great headway--isn't she supposed to say that? I plan on stopping physical therapy after the new year, due to my work schedule. We'll see then how and if my pain progresses.

KC, I agree with others that if you're bruising that your therapist's techniques are too rough. PT typically leaves me with 2-3 days of soreness, but nothing that would make me cancel my next session.

[Violet M]

KC, I know, I've heard that some of the PT's on the list can be pretty intense in their treatment. I agree with Hermajesty -- if PT is increasing your nerve pain that's where the red flags go up.

[Charlie]

There has only ever been one controlled study assessing myofascial PT treatment for pelvic pain and the patients it seems were only tracked over 12 weeks. I find this remarkable as PT is often spoken about as if it is a proven treatment. It is not and even the researchers in this study acknowledge this.

This study was presented at the AUA in 2010. A report is below.

Friday, 04 June 2010
SAN FRANCISCO, CA USA (UroToday.com) - This year there was a decided clinical focus in the podium session devoted to IC/BPS. There were many interesting and well-received presentations at this session, and coverage will concentrate on several of these sessions.

A highlight was a presentation by Dr. Chris Payne of Stanford, representing the Interstitial Cystitis Clinical Research Network of the NIDDK. He discussed the randomized, multicenter trial of the efficacy, safety and tolerability of myofascial physical therapy in women with IC/BPS as compared to an active control of global massage therapy.

Ten standardized treatments over a 3 month period were administered. The Global Response Assessment at week 12 was 26% in the global massage group and 59% in the myofascial physical therapy group (p=0.0012). No significant differences in secondary endpoints (pain, urgency, frequency, O’Leary Sant scores) were noted, though trends in all showed improvement. Blinding was attempted, but unsuccessful.

He concluded his presentation with the caution that this was a small group of highly select patients. The durability of the therapy remains unknown.

Presented by Christopher Payne, Mary Pat Fitzgerald, David Burks, J. Curtis Nickel, Emily Lukacz, Karl Kreder, Toby Chai, Phil Hanno, Robert Mayer, Claire Yang, Kenneth Peters, Harris Foster, J. Richard Landis, Liyi Cen, Kathleen Propert, and John Kusek at the American Urological Association (AUA) Annual Meeting - May 29 - June 3, 2010 - Moscone Center, San Francisco, CA USA

I think PT is worth trying and if you have a purely muscular problem then clearly it may well help you. However do not go into thinking that this is a proven treatment.

It should also be noted that in 2009 a Randomized Multicenter Feasibility Trial Of Myofascial Physical Therapy For The Treatment Of Urological Chronic Pelvic Pain Syndromes was conducted. 48 patients were included in the study.

An article describing it is below

http://www.medicalnewstoday.com/articles/161564.php

I found this qoute the most interesting

The overall GRA response - moderately or markedly improved - was 57% in the physical therapy group and 21% in the massage group. Of interest, a difference between treatment arms was present only in the interstitial cystitis subjects. Global massage was effective for both groups of patients, but only myofascial physical therapy was effective for BPS/IC.