Health Organization for Pudendal Education

Hi
I live in the UK and have suffered a similar issue now for about 7 years. I have seen a number of professionals from urologists to Dr Greenslade in Bristol. My numbness tends to be at the base of the penile area and i cant really feel sensation. If i pinch more then just the tip of the skin i dont feel any pain or discomfort. I've read posts and done as much research as i possibly can and am still no nearer to finding an answer. I've had corticosteroids injected into the alcocks canal on three occasions without and guiding equipment and none of these have worked. Obviously finances are an issue so going to see Dr Potter in USA is out of the question and i cant find any Pelvic Floor therapists in the uk that will work on men. I wish i could be of more help but i guess having this gets you down and you just try and blot it out taking each day as it comes waiting for a miracle.

From what I understand Dr. Potter is giving out details on how to do her MRI. Maybe one of the doctors in the UK would call her and get the details. Another option is Dr. Kalinkin in Phoenix, AZ that works closely with Dr. Hibner. Not sure how different her pudendal protocol is but that is someone else that maybe can be contacted.

King Kenny, I think I've read of people getting the MRN in the UK. It's slightly different than Potter's MRI but might give you some valuable info.

Try calling William Taylor in Edinburgh and see if he knows anyone in your area who does PT on men. Or Maeve Whelan in Dublin might know someone. She has taught a number of seminars to PT's in the UK. They are both listed in the list of PT's from the homepage at pudendalhope.org.

Violet

Hi Violet
Thank you for your response, i will try calling the PT's listed and see if there is anyone closer to me. I discussed an MRI Scan with dr Greenslade in Bristol and gave him details of Dr Fullers methods and he informed me that it would be possible to replicate a similar scan to Dr Fullers. I had this done and the results were fairly inconclusive but did show a small odoema at the base of the penis, unfortunately when i had a cat scan the physician was unable to locate the odoema and suggested two nerve blocks one on each buttock. This unfortunately had little effect bar numbing the whole of my left leg! I have seen quite a few posts about Dr Potter in New York and the scan she carries out seems to be very thorough so i may go about looking to see if there is any 3T scanning equipment in the UK and pass on details of how Dr Potter undertakes the scans.
Dr Greenslade tried injecting cortisone and steroids into the alcocks canal manually with the second injection showing slight signs of improvemnent but these soon subsided.
Having read many posts on here i guess i'm fortunate in that i do not suffer with much pain but i guess it still doesnt make me feel any better about myself.
Thank you for all the hard work that goes into running this site and i'm sure it is very much appreciated all over the world. Keep up the good work.

Kenny, sounds like you have already been doing quite a bit of research. Hope you can find someone who uses Potter's protocol.

Sounds like the medication from your nerve blocks into the buttocks wandered over to the sciatic nerve which is not uncommon with pudendal nerve blocks. Was there any temporary loss of sensation/numbing of the PN distribution area as well (saddle area) showing that the block medication got to the pudendal nerve and numbed it? It's pretty typical for the effects of these blocks to be very temporary. I honestly haven't heard of many people with long term improvement from nerve blocks but since it can occur it's something you have to go through before surgery will even be considered. And nerve blocks can also be very diagnostic -- if they numb the saddle area and provide even a few hour's relief. Good luck -- I hope you can find some answers. Your situation sounds similar to Flyer28's.

Violet

Hi Violet
Thanks for response, yes i have done as much research as i can but i guess being no closer to an indication as to why its occurring is the thing that gets you down. I have e-mailed both PT's you suggested and am waiting to hear from them. Ali mentioned a Dr in Austria who performs surgery but until i know what is causing the numbness and lack of sensation i cant really move forward with any kind of surgery. I do need a thorough scan to at least pin point the problem and thereafter at least i would have something to take to a surgeon and ask whether surgery would help.
I may e-mail Dr Aszmann and ask whether he has dealt with similar issues and see if he uses the same scans as Dr Potter in NY, in which case to try and find an answer i would go to Austria and see what can be done. Do you know of any male success stories with similar issues?

Hi King,

I agree -- surgery is thought of more as a last resort for people with intractable pain. Can't think of success stories for numbness and loss of sensation off the top of my head but theoretically the possibility exists since peripheral nerves can heal. Hopefully you can find a good PT who will be able to help you out.

Violet

Is there any update on this? any success with the return of sensation? I have penile numbness for about 6 years now.