Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

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!

Interested in more discussions like this? Go to the Brain & Nervous System group.

I got this terrible thing about 7 weeks ago.. omg ! Three special nerve blocks have not helped. Thankfully, from information some wonderful soul left about a brochure on Pud

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I am soon having a CT scan of the Pudendal nerve! So anxiously hoping for an ANSWER !!

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Hello @1mepnurse, I see that you recently joined Connect and I would like to add my welcome along with other members. It sounds like you have had 3 nerve blocks of to try and help with the chronic pain. Have you been diagnosed with Pundendal Neuralgia? You mentioned you have an upcoming CT scan of the Pudendal nerve. Are you able to provide an update after your CT scan and let us know if a new treatment plan is suggested?

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@johnbishop

Hello @1mepnurse, I see that you recently joined Connect and I would like to add my welcome along with other members. It sounds like you have had 3 nerve blocks of to try and help with the chronic pain. Have you been diagnosed with Pundendal Neuralgia? You mentioned you have an upcoming CT scan of the Pudendal nerve. Are you able to provide an update after your CT scan and let us know if a new treatment plan is suggested?

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I pretty much diagnosed myself with having every symptom named! ( am a retired RN..)
I learned more.. am having Pudendal Nerve block under GUIDED CT is what it is. It will b to try & give me 1-2 weeks of relief and if it works, may repeat it. Hopefully, eventually it may keep giving relief.
It's next Tues, 22nd. I am more than happy to share my results!! Praying for us all !!

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@1mepnurse

I pretty much diagnosed myself with having every symptom named! ( am a retired RN..)
I learned more.. am having Pudendal Nerve block under GUIDED CT is what it is. It will b to try & give me 1-2 weeks of relief and if it works, may repeat it. Hopefully, eventually it may keep giving relief.
It's next Tues, 22nd. I am more than happy to share my results!! Praying for us all !!

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Hello@1mepurse, what happened with your ct scan if you don’t mind me asking? Hoping you got the answers to what you were looking for. Do you have a diagnosis of PN for sure? Or is it PNE?

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@johnbishop

Hello @1mepnurse, I see that you recently joined Connect and I would like to add my welcome along with other members. It sounds like you have had 3 nerve blocks of to try and help with the chronic pain. Have you been diagnosed with Pundendal Neuralgia? You mentioned you have an upcoming CT scan of the Pudendal nerve. Are you able to provide an update after your CT scan and let us know if a new treatment plan is suggested?

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Sadly, the Pudendal block done by guided CT scan did not help me, so, therefore, even though I have every symptom of PNN, it's not that! Pelvic floor therapy is gonna b helpful some, I pray!
Prayers for ANYONE with these issues! Stay in touch !

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@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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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?

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@dhc684

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?

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Has the surgery really helped anyone? I have not had this but a couple months. Pelvic floor therapy helps over time.

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@dhc684

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?

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Hello @dhc684, Welcome to Mayo Clinic Connect. Darrell @dmburns54 may not have seen your message since he was not specifically tagged using his member name. Hopefully he will see this message. You may also be interested in another discussion – Pudendal Nerve Entrapment/Neuropathy/Damage: https://connect.mayoclinic.org/discussion/pudendal-nerve-entrapmentneuropathydamage/ to see if other members can recommend a surgeon.

Have you thought about getting a second opinion from a major teaching hospital or Mayo Clinic?

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@johnbishop

Hello @dhc684, Welcome to Mayo Clinic Connect. Darrell @dmburns54 may not have seen your message since he was not specifically tagged using his member name. Hopefully he will see this message. You may also be interested in another discussion – Pudendal Nerve Entrapment/Neuropathy/Damage: https://connect.mayoclinic.org/discussion/pudendal-nerve-entrapmentneuropathydamage/ to see if other members can recommend a surgeon.

Have you thought about getting a second opinion from a major teaching hospital or Mayo Clinic?

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John, Thanks for your reply. So far I have seen doctors at Stanford and a doctor in private practice who was formerly at the Cleveland Clinic. None of these have been surgeons as I don't think anyone does this surgery in northern california. What's left for me seems to be either implants or surgery. I located a surgeon who says I'm a good candidate for his surgery, but it's hard to get independent verification or to know if he is the best doctor. I'm hoping to find someone who has experience with a surgery.

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@dhc684

John, Thanks for your reply. So far I have seen doctors at Stanford and a doctor in private practice who was formerly at the Cleveland Clinic. None of these have been surgeons as I don't think anyone does this surgery in northern california. What's left for me seems to be either implants or surgery. I located a surgeon who says I'm a good candidate for his surgery, but it's hard to get independent verification or to know if he is the best doctor. I'm hoping to find someone who has experience with a surgery.

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@dhc684 Not sure if this helps but thought I would share it since so many people are asking the same questions…

"What kind of doctor do you see for pudendal neuralgia?
There is no particular specialty of physicians who treat PN, but when searching for a physician locally you may want to start your search with a sports medicine doctor, neurologist, gynecologist, urologist, pain medicine doctor, interventional radiologist, orthopedist, neurosurgeon, or plastic surgeon who has an …"
List of Doctors | Health Organization for Pudendal Education: https://www.pudendalhope.info/node/54

Mayo Clinic has a great sports medicine department, as well as neurology and the others listed. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@johnbishop

@dhc684 Not sure if this helps but thought I would share it since so many people are asking the same questions…

"What kind of doctor do you see for pudendal neuralgia?
There is no particular specialty of physicians who treat PN, but when searching for a physician locally you may want to start your search with a sports medicine doctor, neurologist, gynecologist, urologist, pain medicine doctor, interventional radiologist, orthopedist, neurosurgeon, or plastic surgeon who has an …"
List of Doctors | Health Organization for Pudendal Education: https://www.pudendalhope.info/node/54

Mayo Clinic has a great sports medicine department, as well as neurology and the others listed. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@johnbishop: Great list of specialists, John. Thanks for that link!

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