Health Organization for Pudendal Education

Hello,

After 4 years of "pain" and burning in the genital area I have been diagnosed with PNE. My GP is sending me to a neuro surgeon in Victoria, B. C. but I am reluctant to have surgery without a second opinion. Do any of you know of Dr.'s in B.C., Canada, who have experience in treating PNE.

Sit easy and be comfortable,

Shavasan

Hi, I am also from BC actually, Victoria. I believe I have PNE but am desperately searching for a Dr in Canada who is aware or even is interested in this area. I am very frustrated and would like to hear what doctor you were recommended to in Victoria as I do not know who it might be.
Koach

Dr. Gordon in Toronto is a neurologist/pain doctor with experience in treating PN. He is my doctor.

But since you are both on the west coast it might be just as easy for you to go to a doctor in the U.S. southwest. See the list of U.S. doctors from our homepage.

Good luck.

Lernica,
thanks for the reply. I have been refused "out of country funding" from my Insurance company as there are no specialists here who are PNE aware. I have been in contact with Dr Antolak in Minnesota but right now, if I were to have surgery, it would not be affordable. I also don't know how I am going to be able to handle sitting in a plane for that long to get there. My sitting "limit" is about 15 minutes. Is there a long wait time to see Dr Gordon?
Thanks, Koach

I don't understand why you were denied out of country funding if there are no PNE-aware doctors in your province (?)

The wait time to see Dr. Gordon is approx. six months.

There are some good posts on this forum about tips for cross-country flying (use the "search" function above to find them). Basically, we stand during the whole flight, sitting only when required. Some people buy multiple seats to lie down on.

Lernica,
The Doctor from the pain clinic here requested the out of country funding. It was refused because he wasn't the right type of specialist. He is an anaestheiogist. However, the neurosurgeon I saw didn't even know what it was and the urologist I saw retired before we got to anywhere near a diagnosis. So, I am back at square one again. My GP is trying to get another urologist to see me, without the 6 month wait, but who knows up here if they are even "aware" of this . It is quite rare at least around here. No one really seems to believe it and yet all the research I've done, PNE is exactly what I am dealing with. I have been in contact with Dr Antolak and have done the 3 nerve blocks up here which he requested.
Thanks for the information on cross country flying. It is hard these days to be able to stand up in flights. They seem to always want you "out of the way". But, it is all I can do. I have a special cushion but I can only last about 15 minutes at the most with me sitting as the pain is too extreme.
Koach

koach wrote: It is hard these days to be able to stand up in flights. They seem to always want you "out of the way". But, it is all I can do. I have a special cushion but I can only last about 15 minutes at the most with me sitting as the pain is too extreme.

If I have to sit down during a flight I sit with my legs tucked under my butt to relieve pressure from the perineum. Not good for the knees but they don't hurt, my butt does!

What kind of a cushion do you use? I thought I had a good "donut" cushion but Dr. Peng in Toronto (an anaesthetist who does pudendal nerve blocks) took one look at it and said it was not up to the job. Using a pelvic anatomy model he showed me how the pelvic floor can hang down quite far below the sit bones and consequently PNers need a very deep hole in the middle of the cushion. So I custom made one for myself using the IC cushion (ordered online) as a base and piling even more circles of foam on top of it. My cushion is now approx. six inches deep, with a big hole cut out of the middle. There are photos of other cushions on this site -- use the search function above to find them.

I'm sorry you're having such a hard time finding a specialist in British Columbia. If you can't get out-of-country funding maybe you should come to Toronto to see Dr. Gordon and Dr. Peng.

On the Canadian Pain Coalition website is a list of physiotherapists across the country who specialize in treating pelvic pain. Maybe you could start there. A local physio might know some PNE-aware doctors. Here's the link: http://prc.canadianpaincoalition.ca/en/ ... _pain.html. For instance, there is a physiotherapist named Jackie Wells from Richmond, tel. 604 276-2236. There's also one in Vancouver and one in Edmonton.

Good luck and please keep us posted!

My Mom has this condition and also lives in Vancouver, B.C. She travelled to Toronto to see Dr. Gordon but frankly this wasn't much help and other than diagnosis, Dr. Gordon will not be able to do much for you. Nerve blocks can be done here in Vancouver by requesting a pudendal block (with steroid) via UBC or VGH. The procedure is done with CT guidance via the radiology department which is arguably superior to the ultrasound guided block performed in Toronto.

For surgery, there is no one in Canada trained to perform the procedure. You will need to go to the U.S. or France or Belgium. According to Dr. Gordon, patients in Canada have succesfully petitioned for funding to go to several of the U.S. and French doctors performing the surgery. You will still have to pay for travel and accommodation.

If you would like more info as to who exactly my Mom is seeing in Vancouver for pain treatment etc send me a PM.

koach wrote:Lernica,
The Doctor from the pain clinic here requested the out of country funding. It was refused because he wasn't the right type of specialist. He is an anaestheiogist. However, the neurosurgeon I saw didn't even know what it was and the urologist I saw retired before we got to anywhere near a diagnosis. So, I am back at square one again. My GP is trying to get another urologist to see me, without the 6 month wait, but who knows up here if they are even "aware" of this . It is quite rare at least around here. No one really seems to believe it and yet all the research I've done, PNE is exactly what I am dealing with. I have been in contact with Dr Antolak and have done the 3 nerve blocks up here which he requested.
Thanks for the information on cross country flying. It is hard these days to be able to stand up in flights. They seem to always want you "out of the way". But, it is all I can do. I have a special cushion but I can only last about 15 minutes at the most with me sitting as the pain is too extreme.
Koach

Hi Koach,

Just wondering where you had your nerve blocks done? I've been looking for someone in western canada who can do the blocks under image guidance, and haven't had any luck. I'd consider going to see Dr. Peng in Toronto, but getting the blocks done in Vancouver/Calgary/Edmonton would be a lot more convenient.

Thanks.

MMR, you may have missed Dr. Rad's post about nerve blocks in Vancouver.

DrRad wrote: Nerve blocks can be done here in Vancouver by requesting a pudendal block (with steroid) via UBC or VGH. The procedure is done with CT guidance via the radiology department which is arguably superior to the ultrasound guided block performed in Toronto.