Health Organization for Pudendal Education

Hopefully a few sessions with the knowledgeable PT will point you in the right direction. Maybe you can explain the financial situation to the PT and he or she can recommend someone else PN aware who might cost less out of pocket for you. I agree with the others that you should stop weight lifting immediately -- maybe you will see a pain reduction from that and the PT. With this condition you never know where and when you will stumble upon something that helps!

Sincerely,
Stephanies

I think with weightlifting you won't necessarily have a sudden injury but it can be an injury that accumulates over time, if that makes sense. That's what happened to me.

Violet

Hey everyone,




So I've done a couple PT sessions the past few days. Although they know of PN/PNE, they did not believe that I have it despite my symptoms (not sure of what to think about this).

The PT consisted of them telling me some exercises that I can do at home and pretty invasive stuff. By this I mean the PT pulled and nudged some pelvic muscles, entering through the rectum. I cannot say I know what they were going for, but it seems like they were trying to manually stretch the muscles.


In the days after PT, my symptoms have not subsided one bit; they might have actually worsened. They assured me that I would see improvement, but I'm having some doubts. If I do have PN/PNE, then all the therapy will have been a waste of time. A part of me feels like the PT are reluctant to to tell me that I probably have PN/PNE, considering the hefty price I pay for each session.


Have any of you had similar experiences with PT? Any advice?


Once again, I thank you all for you immense support!

Well I for one always questioned the idea that you have PNE, in favor of the idea that you are more likely to have some central nervous system involvement in your pain. But even for people with PN/PNE, internal PT (the access through the rectum) is unhelpful to many people. There are other forms of PT (external trigger point masage, core excercises, joint manipulation), which helped me whereas internal PT did not. My advice though is to be more specific with your questions. If they do not think your pudendal nerve is involved, why not? And what is their alternative explanation? As far as peripheral nerves are concerned, the nerves running through the inguinal canal cause many of the same symptoms as pudendal.

I had PT prior to PNE surgery until they realized it was PNE. At that point they said PT would not help or solve my PNE and sent me to Dr Marvel for official PNE diagnosis. It could be painful and made me worse. However after the surgery it predominantly made me better with the internal rectal trigger points and stretching helping me the best, I miss that since insurance won't pay for this type of maintenance. They did teach my husband external connective tissue for my abdomen, thighs and glutes which helps but still not as good as the internal rectal. I had a couple flares early on before they determined that they had to stay at the edge of the opening, first knuckle of the figure instead of going in deeper. I also do core strengthening exercises to keep the muscles from pulling the nerve. Generally people try PT for a bit then decide if it is helping to continue or too painfl and move on to another treatment. Goid luck
Janet

HerMajesty,

I've given up on the theory that it's an issue steming from the central nervous system. An MRI of my brain and lumbar, in addition to an EMG, revealed absolutely nothing. The neurologists couldn't catch anything that would indicate I had a neurological problem.

I've read that for some symptoms get worse before they get any better while doing PT. Any thoughts?


Also, how long should I be doing PT before I look elsewhere? When should I begin to see results?


I'll make sure to ask why they don't think it's PN/PNE. Does one experience pain in perineum and soreness in glutes if it's pelvic floor dysfunction? I mean, what symptoms do these two conditions share? What don't they share? I want to make sure I know this in order to get a better idea of how knowledgable the PT are about PN/PNE

lucky wrote:HerMajesty,

Does one experience pain in perineum and soreness in glutes if it's pelvic floor dysfunction? I mean, what symptoms do these two conditions share? What don't they share? I want to make sure I know this in order to get a better idea of how knowledgable the PT are about PN/PNE

Yes, I get pain in those areas. I can get different symptoms at different times.

As for internal PT I think there are two aspects of internal work.

1. Direct work on the Nerve to mobilize it.

2. Trigger point work to get the pelvic floor to settle down.

3. Stretching and relaxing the pelvic floor to condition the muscles and help the person learn to better control the pelvic floor. I think women are much more aware of their pelvic floor than men.

Personally I have had all of these in the past, and I need number 2 once a week to "maintain" if I go more than 10 days I stiffen up and my gait changes.

Lucky,

You have a very comparable life to what i am going through right now. The only difference in symptoms would be urination. I hear over and over again that what works for one person may not work for another etc. I have started with a Pelvic Floor PT this week and she gave me some stretches to do on a regular basis. I too feel numbness and tingling in the perineal area, rectum and legs and feet. It is not a terrible pain but more of a sensation of numbness and tingling.

I guess from what i see so far:

1) Weekly Pelvic Floor PT
2) Daily stretches for Pelvic Floor and deep diaphragm breathing (reverse Kegels) to relax your PC muscles.
3) You also may want to consider Shockwave therapy and ART technique. I have read many places that these techniques work for many ppl. It may not work for you but give it a try if your at your breaking point. I too know what it is like to lose the will to live. I sometimes wonder if i should just spend all the money that i would on treatment and travel the world instead.
4)I was directed to read these books to fully understand Pelvic Pain (Healing pelvic pain by Amy Stein and Headache in the pelvis by David Wise). Apparently they even list some essential exercises to do that may help. Not sure, i haven't read any yet. I will be purchasing them within this week though.

Anyways, from what i heard, Shockwave and ART can be pretty expensive (roughly 3000$ for 5 days-rough figure). I am still debating what to do myself as well.

I know what its like to be young and wanting your old life back...

Hi desperate
Are you seeing Nelly for physio? Have you started on any meds yet or waiting until you see Dr Gordon? I wouldn't jump right into the shockwave until you get a proper diagnosis from Dr Gordon. He really is the only PN physician here in Canada and he will get you diagnosed and set up with a medical plan, maybe meds, blocks,etc. He has been wonderful to me pre op and post op. You only have 2 more weeks until your appointment so don't go spending a lot of money until you know what is going on with your body. Ohip will cover what you need in the states if that's the route Dr G thinks you need.

Take care and stay strong

Lara

Hi Lara,

I am doing PT with Kathy (shes at Nellys office-works with her-similar treatment). Yes i am not going to rush into shockwave or ART unless i know forsure what is going on. I want to try and do whatever necessary to stay off meds and pain killers. I do not want to go on nerve blocks (as this just masks the symptoms). I want to find a solution, not a cover-up.

You had mentioned OHIP covering medical expenses in the states? How does that work? do you need an out of country form or something and this needs to be signed by a doctor? I wanted to get some MRI testing by Dr.Potter in NY but decided to wait it off until i speak to Dr.Gordon in two weeks.

Kind of stressing out about this whole process. Still not able to handle and cope with this so soon. Its kind of like a train hit me head on and now i have to accept it and move on with this new life.

I guess a great thing i would like to understand is how often should i do PT? I initially felt a little better after my first PT treatment on Tuesday. I wanted to do twice a week at least and see where that takes me. I have also done some research for other PT's in the states that specialize as well. They usually do Pelvic floor treatments for 1 week consecutively day after day. Would this be too much for me or would this be something my body might be able to handle?