1. < Chronic Pain

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 Chronic Pain Support Group.

jraslevin | @jraslevin | Oct 11, 2022
In reply to @mikaylar "I sat on a donut for 14 years. I am so sorry for you. Like I..." + (show)
@mikaylar

I sat on a donut for 14 years. I am so sorry for you. Like I told others, anti-seizure medicine was the final cure.

Jump to this post

I’m on the max dose of neurontin & can’t take lyrica. 🤷🏼‍♀️

REPLY
mikaylar | @mikaylar | Oct 11, 2022

I took Topamax for an unrelated issue and within 2 weeks I got relief. Anti-seizure drugs are nasty, but it was worth the 2 weeks of taking it. See a good pelvic PT. Where do you live?

REPLY
mgeasland | @mgeasland | Oct 16, 2022
In reply to @dmburns54 "Hello, I crushed the left branch of the Pudendal N. in 1995. It took 3 years..." + (show)
@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

Jump to this post

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???

REPLY
1 reply
mgeasland | @mgeasland | Oct 16, 2022
In reply to @menville "I have had multiple nerves with neuralgia and opted out of surgeries due to other health..." + (show)
@menville

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

Jump to this post

Hi, my next step is the nerve-block injections with steroids. You mentioned you got some relief from these injections. Can you be more specific to what was the best case scenario (relief lasted for weeks, months). And also you mentioned in some instanced was no relief at all. Any idea why?
Thank you

REPLY
4846 | @4846 | Oct 17, 2022
In reply to @mgeasland "Thank you very much, I read about Dr Antolak. I believe now he has a private..." + (show)
@mgeasland

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???

Jump to this post

Following

REPLY
mikaylar | @mikaylar | Oct 18, 2022

I had this monster for 14 years and sat on a donut. The only thing that worked was anti-seizure medicine that I was take off label for an unrelated problem. It was Topamax and worked in less than 2 weeks. Nerve blocks only made it worse with irritation. As about anti-seizure medicine.
Mikayla

REPLY
klm4747 | @klm4747 | Apr 4, 2023

Does anyone have Pudendal Neuralgia?
I’m looking for a doctor at the Mayo Clinic that deals with this.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 4, 2023
In reply to @klm4747 "Does anyone have Pudendal Neuralgia? I’m looking for a doctor at the Mayo Clinic that deals..." + (show)
@klm4747

Does anyone have Pudendal Neuralgia?
I’m looking for a doctor at the Mayo Clinic that deals with this.

Jump to this post

Hi @klm4747, I moved your question to this existing discussion about pudendal neuralgia so you can easily connect with others.
- Anyone out there diagnosed with Pudendal Neuralgia?: https://connect.mayoclinic.org/discussion/anyone-out-there-diagnosed-with-pudendal-neuralgia/

You may appreciate this video with Isabel Green, M.D., and Jenna Miller, APRN, D.N.P., C.N.P., as they talk about the pelvic pain clinic at Mayo Clinic in Rochester, Minnesota.


If you would like to ask about getting an appointment, you can start here: http://mayocl.in/1mtmR63

REPLY
bloom3309 | @bloom3309 | Apr 5, 2023

Jenna Miller has no need to talk so fast. She should slow down by at least 2 words per second to be understood on screen.

REPLY
1 reply
rossborak65 | @rossborak65 | May 16, 2023
In reply to @nickyfriskel "I can relate.. I’m on anti depressants too... I am so lucky to be in AZ......." + (show)
@nickyfriskel

I can relate.. I’m on anti depressants too... I am so lucky to be in AZ.... I'm seeing one of the top 10 doctors/surgeons who deal with this on Wednesday and I'm hopeful he can help. Thank you for responding to my post... It's hard to stay positive but I try.... I hope you find some relief.

Jump to this post

did he help you?

REPLY
View MoreView Less
Please sign in or register to post a reply.