Can Internal PT Make You Worse Off?

[JD1]

I've recently had a recurrent bout of pelvic pain, it occured as a sudden pelvic cramp-spasm which started the whole process again. Prior to that I had been asymptomatic for 2.5 years. Why it went in remission I have no idea though I wasn't using PT.

Previously I had bad experiences from EPS digital expressions which had made me quite a bit worse (all cultures negative). I'm beginning to believe that this is indeed a muscular/nerve issue and that PT can be helpful along with relaxation, etc.. I'm worried, however, that a pelvic Therapist I've talked to could make things much worse. I understand a short term flare up but significant long term pain is something I really don't want to risk. She advises she'd be slow and gentle but I'm vary wary.

Is there a risk? Has anyone had a bad experience that set them way back or brought on new symptoms?

Thank you.

[graeme]

First of all I also had years of remission with no treatment a few years after my initial bout.

PT can flare you at first but done properly it should happen less and less and then make you feel better. Long term is should help or speed up a remission.

[JoVoChicago]

I must admit to being severely anxious about internal TP therapy too - I can handle the sensation as it's happening (I think) - but - I'm starting to calm down in there and I know how just a big bowel movement can create a flare up for me - I can't imagine how poking and prodding will make everything feel afterwards... I mean - I'm sore down there for 2-3 days after a manual digital rectal prostate exam so I'm having a difficult time coming around to the concept of internal Trigger Points being pushed on.
Can anyone relate to me?
Thanks ...
Joseph

[JD1]

It just seems counterintuitive to me. Other muscles heal through time, why not pelvic floor muscles through relaxation, heat, etc.. I don't see how rubbing, pressing, manually stretching or other related techniques would do anything but exacerbate the situation. I know when I pull a hamstring, bicep, or other muscles the last thing I'd do is press on "trigger points" within it.

Why would the pelvic floor muscles be unique in this way. I'm loathe to spend time and risk exacerbating my condition by a PT pushing around in there.

Am I missing something?

[webslave]

Am I missing something?

Yes. Have you read A HEADACHE IN THE PELVIS?

[JD1]

Yes, I've read the book thoroughly, editions 3 and 5.

The data provided on Dr. Wise's website indicates 21% are made worse off as to their Total Pain Scores. This fact is not mentioned in the narrative write-up which instead concentrates on those deemed "successful" and wholly dismisses this figure. Yet the 21% is clearly listed in the graphical data.

Hence my question. Can PT make you worse off? In my view 21% is a significant percentage of people made worse through pursuit of PT therapy. It would seem to me that anyone who has experienced a flare up through PT might well be advised to pursue a different therapy. While it's natural to pursue what might seem a promising alternative, such as PT to those in pain, and certainly I'm in that category, there appears to be a real and significant risk which is supported by his own data. It would seem to me that anyone who has ever experienced a flare up through PT might well be advised to consider an alternative therapy so as not to be a member of that 21%.

I'm not a doctor but my understanding is a pelvic muscle is a muscle, tissue composed of the same matter as other muscles in your body. Again, it seems counterintuitive that in order to heal tightened, strained muscles one should be "poked" and pressed upon in there.

What am I missing?

[webslave]

Yes, as we've discussed numerous times on this forum, PT can and does lead to an initial exacerbation of symptoms in some men. In fact, it's a good sign, telling you that yes, you do have the condition, and there is hope for a cure. The flare does not last and simply has to be endured until it passes, and it will pass, especially if the physical therapy is skilled and regular (a "now and then" approach won't do).

If you are not able to work out why pressing trigger points eases the problem, then move on to "The Trigger Point Therapy Workbook" (available at my Amazon shop, link in my signature below).

Pelvic muscles are not different to other muscles. I get trigger points in my right shoulder/neck from using a computer mouse, and my Theracane is vital for easing the trigger points. The pain in the shoulder feels intense, and to think it comes from a tiny tensing of my right hand is proof that all you need to form agonising trigger points is a tiny, long lasting electrical impulse into an area. In CPPS, this is usually caused by a tendency to "hold" the pelvis in a tensed condition, but not in an obvious way. It's so mild you may not even notice it.

[JD1]

I've heard the temporary flare up issue regarding PT often.

But again, why would 21% of the patients report they are worse off upon follow up with the Stanford/Wise-Anderson Protocol. These statistics are are non-blind gathered by the practioners conducting the treatment, which would typically yield very conservative numbers regarding failures.

It seems that when one looks at the actual data you should enter such treatment very cautiously.

[webslave]

I've asked Wise to send me the full text of that 2005 study so I can comment on the scores.

However, in their 2006 study, Wise and Anderson state;

Patients were quite accepting of the therapeutic regimen and no one withdrew from the protocol because of worsening pain.

[JD1]

I have the article and poster available as pdf files but I seem unable to make as an attachment to the Board.

I'm hopeful the treatment works but I'm very concerned about being placed in worse shape. The data indicates more than 1 in 5 report as being worse, as listed by the treatment providers in their results table.

[webslave]

Remember the old saying that doctors have about what happens if you give the patient no treatment: after a period, one third will be the same, one third will be better and one third will be worse. From that point of view, 21% feeling worse is an improvement on doing nothing.

[JD1]

I'm still unconvinced. The 21% "made worse" rate wasn't addressed in the Journal write up. I'm hopeful but I put my faith in science.

I note that an NIH study, NCT 00434434 sponsored by the NIDDK, assessed what benefit PT would have on pelvic pain. The study was conducted at four seperate locations in the U.S.. The study is listed as completed in November 2007 but doesn't have any results posted.

See http://www.clinicaltrials.gov/ct2/show/ ... apy&rank=1

Does anyone know of the findings? For me that would be very helpful in assessing the efficacy of PT.

[Jay]

JD1,

I don't have the information you requested (Webslave probably will), but I want to address your concerns over physical therapy.

If you want to know whether it can be helpful in treating or even bringing remission in the condition, you need only look at the success stories. Many guys have posted there about how PT significantly improved their quality of life. Does PT exacerbate symptoms? Yes, absolutely, but this is not a permanent reaction. When you're stretching muscles out of a clenched state they've become accustomed to over the course of years, they are going to rebel in unpleasant ways.

Can PT cause permanent harm? I'm sure that it could, at the hands of an unqualified therapist. This is a highly specialized type of PT, and the best folks out there were trained specifically do to it. Pelvic floor PT has long been used on women, and was more recently discovered to be beneficial in male patients. The foremost physical therapists working with PFD are not quacks. We're talking people with doctorates who are associated with major medical or teaching facilities.

My best suggestion to you would be to speak with one of those qualified PTs. Tim Sawyer, Marilyn Freedman, Stacey Futterman, etc. Many of them will communicate with people who aren't their patients (I speak from experience) and address questions on the condition/treatment. Better yet, if the study results concern you, contact Dr. Wise directly. He is very liberal with the phone time he hands out and would no doubt be willing to discuss the study. After all, he's had to present the results to the medical community personally.

Best,

Jay

[webslave]

Dr Wise answered my query about this issue so:

The original paper of 2005 was a very heterogeneous group of patients treated in multiple variations of the Stanford/Wise-Anderson Protocol. There is a difficulty in interpreting the score related to worsening of symptoms. Typically many patients get flared up after the PT part of treatment and this a transient flare up can last from a few hours to a number of weeks (rarely longer) but this flare up is usually integral to things improving. The PPSS pain domain score was worse for 21% of the men at a 27% average increase after treatment. Similarly a simple score from 0-10 on visual--1/92. 79% or 73 out of 92 thought they were improved. The remainder described no change. Therefore it is impossible to explain 21% of the patients writing down a worse pain score when only 1 individual stated he was worse overall after the treatment.

If we had real resources to do a comprehensive study, this kind of question would be much easier to answer.

I have no doubt, in my mind, that physical therapy is incapable of making things worse on a permanent basis. It simply cannot do that. It is a conservative treatment. It amazes me how men get hyperanxious about having muscles massaged, but other men are as keen as mustard to get their buttocks hacked open with a scalpel to "release" the pudendal nerve, or have a laparoscope shoved inside them to butcher their poor innocent prostate glands! So on the one hand I'm reassuring men like JD1 that it'll be ok if a therapist rubs a muscle, while on the other hand I'm trying to dissuade other men from radical and life-altering surgeries! Go figure.

[JD1]

The data from the 2005 study indicates 29 individuals (of a total 138) reported a median 27% increase in total pain following the protocol. The information is derived from the non-blind self reported data of the protocal sponsors. Typically, though I'm not claiming it's the case here, negative data is often reported lower by study sponsors, as here, than would be the case in a double-blind neutrally sponsored study.

This information should give anyone pause to pursue treatment of this kind. Could you get better? Sure but the data indicates you run a significant risk of getting worse.

I'd like to have the faith and go forward. Believe me, I want to get rid of this pain as much as anyone. However, I'm an analytical person, a lawyer, and data/evidence is compelling in most decisions of this kind.

Does anyone know the results of the completed NIH, four location study completed in 2007 regarding the efficacy of PT for this condition? The website from my previous post indicates it's completed but results haven't been provided.