Physical therapy successes?

[bergdalm]

Hello everyone! I posted awhile back and was fairly convinced I did not have PN. However within the past 2 months I have gained majority of the symptoms and I am finally understanding the intense pain and discomfort of this condition. I did do a set of peripheral blocks on my pudendal nerves (both sides) last week w/Dr Antolack. I still do not trust him, he seemed very annoyed when I needed him to explain things to me before I would sign the release for the procedure. When I brought up the fact that I've read or chatted with a number of you that the injections did not work, he immediately said that those people are probably not doing the self care programs. I am determined to improve my condition.

I've been through a few physical therapists. Most recently craniosacral/myofacial release therapy which seemed to help calm a few things down and have no moved to Cheryl at Maplewood optimum rehab to do more pelvic floor/internal work. MAPS called today to ask me to schedule a PT appt with them but my experience there has been so poor that I'm not sure if I should. Have any of you had success with the PT folks at MAPS? Or what other therapies have worked well for any of you?

I really appreciate any information!

Mel

[Bobby]

Your on the right path, trigger point release/myofacial release therapy has brought me great results in about 5 months. Of course I was also stretching and rolling hard external muscles (abdomen, hamstrings, glutes, inner thighs). Also I have to do pelvic floor relaxation exercises due to a chronically tight pelvic floor. It has become more normal to relax the muscles rather that have them tight all the time. Don't give up on the PT, keep up with it and in no time I'm sure you will see results. You won't get better over night, so don't expect that ever. To sum it up, I have had great success with PT. No more feeling of an object in my urethra, very rare burning sensation, no more golf ball in perineum feeling, never really had pain after sitting, urgency and frequency down to a minimum. Just keep at it, what have you got to lose, except this awful condition. Good Luck

[acw]

I still do not trust him, he seemed very annoyed when I needed him to explain things to me before I would sign the release for the procedure. When I brought up the fact that I've read or chatted with a number of you that the injections did not work, he immediately said that those people are probably not doing the self care programs.

Hi Mel,

In my limited experience with him, Dr Antolak seems to get easily annoyed if you question him (or basically any circumstance where his authority might be questioned). And I'm also one who wants to know what's going on before I sign any releases. I'm not convinced I have/had PN, but he immediately diagnosed me with it, and ordered his self care program. At my next appointment, I admitted not following that protocol, and he jumped to wanting to do the injections. I've read his some of his publications that basically said he doesn't recommend the blocks without adhering to the self care, so it surprised me that he was so pushy about scheduling an injection for me. Honestly, I really don't trust him, either.

So which MAPS location or therapist are they having you go to for PT? I've had some bad experiences at MAPS, but finally came across one PT and one doctor who at least restored a little faith in MAPS again. Also, recently I was referred to Sister Kenny (Mercy Hospital location) where I met two PTs who specialize in pelvic floor therapy and women's health issues. They were both PN aware (and at least somewhat familiar with Dr Antolak), but I don't think they had any special training for treating PN (keep in mind I didn't go in specifically seeking PN treatment, but asked a little about that possibility while I was there). If you are having luck with Cheryl, there's probably no reason to go to somebody new right now. But feel free to PM me if you want any of the details about the PTs I have seen. Take care.

[bergdalm]

Hello everyone!

I am happy to share that I have found some relief and was even pain free for a few hours at work while wearing my TENS unit. I just got it last week, and I could definitely feel the difference between the times that I wore it and the times that I took it off. Has anyone found long term success with this? For those of you who don't know, its essentially a small machine that sends electric pulses and deters pain signals from reaching the brain. I've been placing the pads over my sacrum, near the base of the pudendal nerve area. I am afraid however that I won't be able to wear a unit forever and I need to find a better long term treatment. My current PT is having a full knee replacement soon so I am concerned about having to find someone new again (she is my 4th therapist). I am debating whether or not to go to MAPS for PT still, but no surprise that they give one phone call and haven't been checked up on again.

A few new symptoms have arrived recently that I am a little concerned about. At first I thought it was the TENS unit and the fact that I may have misplaced the pads and the wrong nerves were getting effected, but I've had much more tingling shooting down my legs and upwards through my back and arms. I did take the unit off but it continued to happen. Its as if I had constant goosebumps and now I have a more constant dull ache in my pelvic floor with soreness and some shoot pain in my legs and hips. Has this happened to anyone else? I feel like my whole nervous system is going a bit crazy!

[Violet M]

Mel, when I used a TENS unit before surgery it actually excited the nervous system too much and I was not able to use it. After surgery, once the nerve was released, the TENS was great for calming down muscles that needed calming down and retraining.