Health Organization for Pudendal Education

Update:

I continue to do my rehab of walking, slow running, swimming, and stretching. My PN pain/discomfort is at the lowest level it has been in over a year. (I began shockwave therapy about 1 year ago this month).

Since the sessions of Shockwave, i find I can stretch my pelvic region, my perineum, my buttocks, my hamstrings, etc, as much as i want and there is no pain flare-up from PN. So, I stretch most every night, concentrating on the hamstrings, toe - touches, and perineum stretch. It loosens me up and I figure that is good. Before shockwave, I could not do this with without a severe flare-up.

I am swimming again, and doing a lot of breaststroke, including the whip kick, which is supposedly deadly for people with PN. Again, before shockwave, if I did the whip kick (frog kick), I would get PN flares. Now I can kick quite hard and not get any pain during or after. Swimming is really relaxing for me, and I feel much better after a swim workout.

I am sitting on chairs again without a pad - not long, but I no longer have to carry my cushion around everywhere with me. I limit my sitting to no more than 20 minutes a session. I just don't want to aggravate the PN, as this has always been a big trigger.

I climbed 5 flights of stairs today with no perineum pain. I have not done this in 2 years. I felt like I had just climbed Mt. Everest. I climbed slow, one step at a time, and rested slightly between landings. I used to climb stairs for a work-out, taking two at a time, and I am a long, long ways from doing that, but this is an encouraging start.

I am not lifting weights yet. This has always been a huge trigger, so I am avoiding anything too strenuous that involves my core.

Any small step forward with PN is a welcome step. I am encouraged. I would like to go back for another shockwave session, and may do so early next year. Dr. Andrews is transitioning out of the Cornwall location, back to Ottawa, so that long drive from Ottawa airport to Cornwall is not a thing of the past. I always was concerned with the rental car, winter roads, snow storms, etc. Now, that is much less a concern.

So far, almost 3 years with PN, shockwave is the only modality that has moved me forward. I have had about 5 steroid injections, and I cannot definitively say that these helped.

For those of you who are despairing (as I was) because of this condition, consider shockwave therapy. Results cannot be guaranteed, but any improvement is worth the trip and cost. What we need to do, is get shockwave therapy approved in USA. Any idea how we would might do this???

kone

It's great to hear about your recovery, Kone. You are smart to be taking things slowly and carefully.

I think what it would take to get shockwave therapy in the US for PNE would be a practitioner who is interested in learning how to do it properly and I'm sure it would help if Dr. Andrew published. Do you know if he's keeping any records on his patients for a future publication?

Violet

Hi-
Kone I'm very happy for you that the Dr. Andrews treatments are helping. I'm still considering him for treatment myself.
I'm just checking different treatments off the list, little by little.....

How many shockwave sessions have you had now? It's been about a year, 2 or 3? Sorry if you posted that already.

Thank you for sharing,
Debbie

I have had two sessions of shockwave - the first being 5 days in October, 2012, and 3 days in February, 2013. I am considering a third round, but am holding off on scheduling it, as I am still seeing improvements in my condition. One thing that I have a question about is this: if the PN is freed of its scar tissue(s) entrapments, how long will it be before the nerve begins to function normally again? For example, after surgery, the recovery time listed is anywhere from 6 months to 2 or 3 years. I wonder if shockwave has a similar healing time frame???

Dr. Andrews keeps statistics, but as far as I know, he has not published any clinical data on the effectiveness of shockwave therapy for PN neuralgia.

I don't want to give anyone the impression that I am "cured". I still have pudendal neuralgia. But, the symptoms that I previously experienced are much less than even 3 months ago. Since the last shockwave treatment in February (2013), I have been stretching every day, (working on the hamstrings, buttocks, and perineum), had an Alcock's bilateral injection July 23rd, and I have been the recipient of much prayer. Perhaps anyone of these alone or in combination account for the improvements I am seeing. I do not want to discount any of them.

kone

This Shockwave treatment sounds interesting. Did you travel from US to Canada, to get this treatment done ? Was wondering if you have SI Joint issues also ? I have unstable pelvis been working on trying to stabilize, but very difficult to do with just PT, so maybe going to do Prolo or PRP on SI Joint, and LIagments. Just wondering if you also had an unstable pelvis, and this is how it started. - Thanks for the wonderful input - and hope your PN healing continues.

I do not have any SI instability issues. I injured my perineum on a bike ride, a ride I had done many times before, which resulted in a deep pain (bruise). After the bruise healed, I had PN. You can call Dr. Andrews to see if he has experience and/or success in treating pelvic instability issues. His number (at the Ottawa office) is available on-line. kone

Update: my PN issues have largely subsided over the last few months. I am back to doing exercises again, swimming, etc. I can sit again on a normal chair without pain. I am very thankful.

Wonderful news - I am so glad to hear that yoou have succeeded with the shockwave therapy. Thanks for letting us know. Take care and enjoy!
Janet

Hi Kone,
I'm so happy for you, and thank you for keeping everyone in the loop on your healing.
It sounds like you have made another great stride since your last post in October, fantastic and so hopeful!

Debbie

Thanks for the update, Kone. This is very exciting to hear another success story!

Violet