Health Organization for Pudendal Education

HI folks
Just looking for opinions.
I was seeing one of the more well known PTs in the US for my severe rectal pain and IC urinary urge/ hesitancy issues.
Over several months of regular PT no change occurred . . I took a break to try a different therapy and then continued with her a couple moths later.. Again I worked with her for a few months... this time not as often due to logistics.... again no change.

I belong to another wonderful pelvic pain online support group... here I also have kind friends who are big believers that aggressive PT is the safest and best way to help heal issues like PN, IC/PBS and other related syndromes..

After hearing a lot about another PT Guru in my area I decided to go for one more opinion. This PT knows my doctor group and was familiar with my pain story we when met this week.
Her feeling was that my CNS is over-stimulated by surgeries that I did not need as well as other treatments etc that didn't help. She also knew that I have been in poorly treated pain for a looog time which again relates to the CNS uptake....
By the way, I have had lots of PT in the past few years with no discernable improvement for the most part.

I finally found what seems to be a decent and knowledgable pain mgmt doc and we are pursuing a treatment plan.

So this latest physical therapist feels its best to stay away from internal and aggressive pelvic floor PT in my flare areas (anus/ rectum) and urethra for now.
She does feel I can take some gentle strengthening as due to all the pain and inability to exercise my body has lost all strength..Once the pain is better some gentle pelvic floor PT might then be ok.

I tend to agree that for now aggressive PT is off the menu.

However that confuses me is the gals in my other group strongly believe that a good PT should not back off cuz a patient is flared and in pain... on the contrary they think that if one is in pain, internal PT is gonna help and a great physical therapist should go for it. They are very vocal about this. I should add that tho many have bladder and PN issues like me,
a great majority have vulvar burning and vulvadynia, ..

I have been around awhile and my common sense tells me that no matter how passionate people are about PT, it's not for everyone... and sometimes you have to take a break.
Thats my situation I guess.
But so many of these gals have had their urinary hesitancy and urge cured by a good PT who work on releasing the ligaments near the urethra.
I feel like I somehow missed the boat ...I have seen a few really good PTs. But no one was able to do for me what was described by these gals.. The first PT I mentioned above is willing to continue with me and try to do this..
I think I'e made my decision for now, but am confused by the strong opinions I hear.

There seem to be 2 schools of thought! It is confusing. I just wanted to see what you guys think.
Thx!

Hello,

I think that PT is better than not PT. But you need very knowledgeable therapist that first will fix all misalignment's that can be found in your body and just than go for stretches, exercise, trigger points. As my PT explained that spasms, trigger points, IC, Maigne etc symptoms are consequence of skeletal misalignment and irritated nerves. Muscles have memory so you are not going to feel better overnight but the first step is to put your pelvis and spine to right position.
And then very slowly you can progress to other methods.
This is my PT's opinion anyway.

My opinion is when the CNS is in over-drive. You have got to calm it down first (via meds, lifestyle modification, relaxation, warm baths, etc) and then once the pain is a little lower do therapy (not aggressive) with a very knowledgeable and experienced PT. And even if they are knowledgeable and experienced doesn't mean that they are right for you. Everybody's body is different and every therapist has different technique. I've seen so many different therapists, I can now tell with one session if the PT is a right fit for me. I also have to respect the PT, that is key for me. But bottom line is you can't listen to what other people say, you have to go with your "gut". Sometimes I have said "no" to aggressive treatments because I know it's just not right for me, though it is right for someone else. Pain is such a unique thing because even if we had the exact same issues our brains are not the same and therefore our perception of pain will be different. I'm so glad you've found a good PM doc, Kathy! That's progress!

Hi Faith and Helen,
Thx for your opinions. I appreciate your viewpoints.
I was hoping this new PT could help me release some areas around my urethra and perhaps help with urinary/urge hesitancy that has been horribly painful lately..some online friends had the same issue and found that only a couple of PTs in the the US knew a technique that could help release and relax the area so they could pee comfortably and empty well. I saw one of those PTs as per my friends' advice. But the PT chose to leave the area alone due to my up- regulated CNS (hope Im not repeating myself here!)
Like you Faith, I have seen lots and lots of PTs in my "journey" but haven't seen much progress.
I understand how important it is to be in alignment when it comes to irritating the nerve etc. I have been told by more than on PT that I am out of alignment .I remember one PT saying I was "out" when I first met her, and then a few weeks later saying she had "fixed" me and I was back in alignment again.But...I didn't feel any better!!
She was one of the PTs, like you said Faith, that my gut told me, was not a pelvic floor expert.
And if a PT gets you into alignment, how do you stay that way? Thats a question I've always had. Is it a certain exercise that keeps things in line? (since we can't go to PT indefinitely ) And our bodies are going to naturally gravitate back to what they're used to.

My "2nd opinion" PT that I saw last week actually taped me up, to keep things lined up ...I wore the tape for 3 days. It felt ok, but Im not sure tho if my pain levels dropped.. I have a couple painful issues going on ,but I believe both are driven by the nerves.

Faith, I think you are right about the gut feel, and whats right for you,at the time.
I belong to another online gp. who firmly believe that "great PT" is the only way to heal from these issues ,(PN IC,VV, SIJD etc). But no matter how great the PT person is supposed to be, everyones' experience with them is going to be different and so many factors play into the treatment and the results that you will get.
I've had soo much Pelvic floor PT over the past 6 years, (maybe too much) that right now my gut says to go with the gentler plan the lastest PT I met suggested ..getting the CNS calmed down with God -willing,.. good pain mgmnt... and whatever else will do it for me, and then very gentle pelvic floorPT, along with some gentle strengthening for the weakness in my body.. I will run that by the pain mgmnt doc tho.
Thanks Faith for your good wishes! Im waiting to hear from him..The 'waiting" for call backs is the hardest part sometimes!
Ive been thinking of you and wondering how you are doing..I hope better! Keep me posted what's been going on.
I will keep you in my prayers, and pls pray for me as well! Its nice to hear from you.
Thanks again ladies.
Kathy

In my case urinary urgency, frequency, burning, pain in lower abdominal area are symptoms of Maigne syndrome which is misalignment of T11-T12. Your PT shall be able to softly correct it with 'muscle energy' or other low impact adjustment and teach you low impact exercises to keep it in. Or recommend prolo if it does not hold. But I went through many chiro and PTs that did not know anything about that.

I treated for a total of 4 years with 4 diff PT including Beyond Basics who after a year of zero improvement told me its a waste of my time and money to drive so far (it was abt an hour and a half each way twice a week) when its not making one tiny bit of a difference. They actually referred me to a PT in the Shore are (NJ) who trained with them and I continued with her for another year and half before calling it quits with zero improvement!!! A year later at my doctors pushing I started with yet another PT who was relatively new as I thought mayb shed' have done new tricks up her sleave but nothing.
For me I found the whole experience of PT very hard for me emotionally that everyone agreed it was doing more harm for me emotionally then the 1% chance it was making any bit if a difference.
I don't agree with those who say PT is essential for all people with pelvic pain there are exceptions for every rule and I'm one of those exceptions. U got to listen to what your body is telling you PT is not right for you then I personally think you should listen to your body and stop

I am not saying PT is for everyone. But it helped me. And I continue to improve. But ... I went through 4 PT and 2 chiro before I found one who made difference. I do not even know if I will avoid operation. And she does not. What I do know that my pelvis is symmetric and becomes more stable. I know that sacrum and bones of T10-L5 spine were turned left and were very painful and not painful anymore. That great deal of external spasms are gone. That posterior femoral cutenious nerve is still sensitive but not painful. It used to hurt like hell.
But before I had massage, ultrasound, laser, traction, all kinds of exercises, TENS device attached to me, 2 chiropractors crunching my back, internal physical therapy that addressed only trigger points, trigger point injections, RFA, steroid injections into spine, pudendal nerve, posterior femoral cutenious nerve, SI joints.
All with no result at all.
If I will not avoid operation at least I will have some pains gone and bones in right position and it will be better for healing. Dr. Conway wanted me to do this therapy before operation even if I still will have one.
But everyone is different. If for example your bones are in right place and you have scar tissue PT will help nothing.
The problem is doctor who is trained to find skeleton misalignment and PT that is trained to correct it and will to teach you simple and low impact workout but how to do it right.
Most of PTs that I met know very little.