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LeighO57
@leigho55

Posts: 25
Joined: Aug 16, 2016

Anyone out there diagnosed with Pudendal Neuralgia?

Posted by @leigho55, Tue, Jun 5 3:57pm

I have not been on connect for quite a while since I have only recently received a diagnosis (one of many probably to come) I am looking for someone/anyone who has the pain from a surgical injury of sorts to this nerve to talk to. Is there anyone out there with Pudendal Neuralgia on connect? Thank you!

REPLY

Hello,
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

@dmburns54

Hello,
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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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 for removing that. This person has the same issue everyone has naturally

@dmburns54

Hello,
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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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.

@leigho55 and @dmburns54, I appreciate your willingness to private message. Don't forget that by exchanging experiences here on the forum will also help bring others into the conversation and you'll benefit from a group discussion. Both types of communication have their benefits of course, but I didn't want you to lose sight of the benefit of multiple participants.

That would unfortunately be me.
I've had this problem for over 25 years. My pain is in the left tailbone and anus area. (How lovely).
Only relief has been Clozepam .5mg x2 per day along with Effexor which is an anti depressant. Her to help or talk. I'm back in this dreaded horse because of the opiod crisis and the doctor wanted me to get off Clozepam which I have been fir two weeks. I'm now just like it was day 1 with pain. I'm going back to Doctor to get back on them.

Hello @pita444help,

Welcome to Connect. Gosh, you've been coping with pain for a long time! Since pudendal neuralgia is a type of chronic pelvic pain, I'd like to invite @susiequ @sandytoes14 @michellecrcrn @keri to join this discussion and share their experiences as well.

Have the doctors identified a cause for the pain, @pita444help?

My primary thinks when I'm stressed that the muscles tighten up and causes the nerve to have inflammation. I can't lift anything even remotely heavy or I have pain again. Maybe one day I'll try Mayo in MN. I just don't want to get disappointed if I go. I'm not keen on any surgery.

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@pita444help

My primary thinks when I'm stressed that the muscles tighten up and causes the nerve to have inflammation. I can't lift anything even remotely heavy or I have pain again. Maybe one day I'll try Mayo in MN. I just don't want to get disappointed if I go. I'm not keen on any surgery.

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I have had multiple nerves with neuralgia and opted out of surgeries due to other health complications and/or physicians’ concerns. However I did find some relief from nerve-block injections in some instances (not all). I have used multiple Pain Management Specialists for each instance. I am a Mayo MN and AZ patient but found that this was a close-to-home possibility as travel is taxing when in pain. Just a thought and please make sure you are comfortable with positive & negative of any approach. Best of luck @pita444help

My dad had severe rectal pain, mostly burning sensation since becoming paralyzed from the neck down. Not sure if this is related to Pudental Nerve injurie. Any ideas???

@jakedduck1

My dad had severe rectal pain, mostly burning sensation since becoming paralyzed from the neck down. Not sure if this is related to Pudental Nerve injurie. Any ideas???

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I'm not a Health expert but not understanding his pain since you said he was paralyzed. Seems like the thalamus part of his brain might have been triggering pain that may or may not of been there.

@dmburns54

Hello,
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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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.

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