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Anyone out there diagnosed with Pudendal Neuralgia?

Chronic Pain | Last Active: Feb 27 10:13am | Replies (196)

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I crushed the left branch of the Pudendal N. in 1995. It took 3 years for a diagnosis and until July of 2001 before I had Pudendal release surgery that finally gave me some relief. Dr Stanley Antolak, while he was on the Urology staff at the Mayo Clinic at that time was the surgeon. His office is in St. Paul, Minnesota, phone number is 763-229-2266. You will find a compassionate and one of the most knowledgeable physicians in the world about Pudendal Nerve injuries. There are many different treatments used now. Please feel free to contact me here or by private message to discuss the complexities of this terrible problem.
Darrell Burns

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Replies to "Hello, I crushed the left branch of the Pudendal N. in 1995. It took 3 years..."

Hi @dmburns54 Please note that I removed your personal email address from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam, etc. We recommend sharing personal contact information by private message, as it is a secure, private option.

Thank you @dmburns54 for writing I am very interested in private messaging you a few questions later. Being a woman the situations will be quite different. What do you mean below by “this person has the same issue as everyone else naturally?” just curious. Thanks you again for responding. Will PM widen I get some me time.

Hello Darrell, You were so nice to reply back in June and I have not been back on to respond. I am not a surgical candidate for any type of help to ease any of my pain I have been going through almost three years now. Yes, I am angry. I could of possibly been helped if I had been treated and listened to seriously sooner. NO ONE can tell you how you feel or what you are going through unless they are experiencing it themselves. NO ONE. Not even a Doctor. You have to be living this. It sounds like you were helped and that is great news. That is wonderful news. My nerve/nerves are in a different outcome than yours but I very much appreciate the name of Dr. Antolak. Medication does not even help with the nerve pain anymore it is constant. So bad. No one has any clue. Being lead around like a pony.

Hi Darrell, I think I am dealing with this can I ask how you were finally diagnosed?

How were you diagnosed? I developed pudendal nerve pain after a-severe colon infection or so we think. I had many digestive issues prior. Then after multiple on on and off again treatment for small intestinal bacterial overgrowth. I developed cdiff colitis After treatment for that with antibiotic I developed left side burning, tingling in left side of private parts and upper left leg. Going to a pelvic pain center but really need a diagnosis. Could you elaborate on your experience with this doctor?

Darrell, I would be interested in messaging you. I have a pudendal nerve injury on the perineal branch from cycling. I see that Dr. Antolak has retired and I'm wondering who the best surgeons are. I have tried all of the conservative treatments for 2 years and nothing has helped. Does anyone else have good leads?

I have been preliminarily misdiagnosed as having MS; In better words, I have been shoveled over to MS neurology for many years with no clear diagnosis. 24 years ago I rode a bicycle for 34 miles on an adventure with my friend, We set off with no preplanning or training. 4 days after the bike ride I starting a tingling in my feet by the end of the week I was numb from the chest down, including my entire buttocks and outer vagina. I couldnt tell If I was finished when I went to the bathroom. Very almarming and hard to describe what I was feeling. Tightness pressure like my leg was turning to stone and hard underneath the surface. I could walk and had no muscle weakness. Numerous tests, from brain scans to lumbar fluid extraction and testing Limes disease 10 days of testing . Nothing was found I had mild inflammation in my spine. 24 years later I fell directly on my left buttstocks underside and butt check with my left leg slipped out on water. I started with severe sciatica pain then the numbness. 8 Dr. Visits 3 ER visits and they still point me in the direction of MS neurology. I have had no other episode in my life except these two events. Frustration led me to searching, I was not going to stop until I had an answer. I am having the same feeling with total numbness in my left leg from my tow to my abdomen. My left buttock and the left side of my vagina opening. After days of searching I found the most common and first diagnosis was cycling I was relieved. which of course reduced my blood pressure. I have never heard of an MS person or anyone describe the numbness in the anus region. I was not going to stop until I found the right information. I am refused all treatment I asked for, I am not willing to go thru another lumber puncture ....Unless of course it is only to prove them wrong that I DO not have MS. I am currently icing my L4 L5 and S1 including my buttocks and what I call my tailbone. Large doses of oral inflammatory medicine and I have ordered a lumbar brace Since the Pudendal nerve extends to S1. If there is other information advice or questions please feel free to send me a private message. My 24 years ago experience 1997 is documented at Mayo Clinic. I have been thru the UW in Madison MS neurology as well. I write this response for the benefit of others who may have similar issues

Thank you very much, I read about Dr Antolak. I believe now he has a private practice. I'm in Florida and traveling to Minnesota for me will be very difficult. Also, if I do, I guess I will have to make leaving arrangements for a few months to get treated by Dr. Antolak. you mentioned you got some relief, so not full recovery???

MRI shows pudendal nerve is not damaged. Doctor at pain clinic here at Mayo Jacksonville diagnosed it as PN.
Pain block did not work - as a matter of fact pain is somewhat worse now. Nothing else she can do. Take Gabapentin and Valium and of course PT.
The whole thing is a nightmare. What to wear when going somewhere? Even driving car is hurting. Sitting on towels under my thighs. Does not help much.