Pudendal nerve block scheduled for the first time

[matthewroots77]

HI Violet
Did urine frequency subside after you had surgery on the nerve?

[April]

Hi Matthew,

One of the medications I took for the urinary frequency was tolterodine. I can't remember the name of the other but it also worked---I think it was more expensive so my insurance had me switch to this one.

The Potter protocol is a protocol for MRIs designed to identify pn developed by Hollis Potter, a radiologist in NY. I got it by emailing her office. I'd be happy to share it with you, but I got it over 5 years ago, so it may be updated now to work with newer MRI machines. It might be easier to just contact her office yourself. My pcp sent it to the MRI clinic in advance and asked them to follow it, and they did, although the tech told me that they had to do a little homework to figure out how to do it. Most MRIs don't show signs of pn, but mine did show left side edema where the ST and SS ligaments intersect, which is the most common place for an entrapment.

My pain was mainly burning pain in the area of perineal branch, but I also had stabbing and piercing pain that was on the left side. I did have decompression surgery and it did reduce my pain, although it did not eliminate it. I still have pain and some limitations. I also still have a bit of urinary frequency when I have pain, but I never have it if I am not in pain.

Good luck with the pain doctor. Have you considered consulting Dr. Hibner? I think he is treating male patients.

Take care,
April

[matthewroots77]

Hi Matthew,

One of the medications I took for the urinary frequency was tolterodine. I can't remember the name of the other but it also worked---I think it was more expensive so my insurance had me switch to this one.

The Potter protocol is a protocol for MRIs designed to identify pn developed by Hollis Potter, a radiologist in NY. I got it by emailing her office. I'd be happy to share it with you, but I got it over 5 years ago, so it may be updated now to work with newer MRI machines. It might be easier to just contact her office yourself. My pcp sent it to the MRI clinic in advance and asked them to follow it, and they did, although the tech told me that they had to do a little homework to figure out how to do it. Most MRIs don't show signs of pn, but mine did show left side edema where the ST and SS ligaments intersect, which is the most common place for an entrapment.

My pain was mainly burning pain in the area of perineal branch, but I also had stabbing and piercing pain that was on the left side. I did have decompression surgery and it did reduce my pain, although it did not eliminate it. I still have pain and some limitations. I also still have a bit of urinary frequency when I have pain, but I never have it if I am not in pain.

Good luck with the pain doctor. Have you considered consulting Dr. Hibner? I think he is treating male patients.

Take care,
April

Thanks for your time April
I live in the UK is DR Hibner in the UK?

[Violet M]

Hi Matthew,

Sorry, I thought I had answered your question about whether urinary frequency subsided after surgery but the post must not have gone through. So let me try again. For me the feeling of needing to pee frequently decreased significantly. Before surgery I took an SSRI antidepressant called Lexapro (escitalopram) that helped the symptoms quite a bit but I don't take medication for it anymore. I wouldn't say I'm cured but it much more tolerable now.

Here is a link for where you can find the info on how to contact Hollis Potter. https://www.pudendalhope.info/united-st ... icians/#NY
She is in the New York section (scroll down in that section) You might be able to get your radiologist to follow her protocol if they contact her office for what settings to use for the MRI.

You could also consider contacting Aaron Filler's office because if I recall correctly, there is a place in the UK where you can get the MRN (magnetic resonance imaging) of the pelvis. He is in the California section at the following link: https://www.pudendalhope.info/united-st ... icians/#CA

Violet

[April]

Hi Matthew,

I'm glad Violet gave you the info on how to get the Potter protocol.

Hibner is in the US not in the UK, and a couple years ago he started his own practice and does not take insurance. But, to my surprise, my HMO fully covered a recent telehealth visit with him because the HMO did not have anyone on staff whom I could consult. (And I think if had wanted treatment from him that they couldn't provide, they would have covered that too.) So, if your insurance coverage is set up the way American HMOs are set up, they might cover a telehealth visit.

April

[JeanneJ]

Mathew,
Did you get the nerve block? Are you better?
I am about to get a nerve block. I've been suffering with PN for about 15 months. I believe PT caused it as I never had it before the PT. I also sit a lot for work and had Chronic Constipation.
I am really hoping it will help me. I also have a lot of frequency, but I have Interstitial Cystitis. Thanks.

[Anxiety]

I had my pudendal nerve block. At the time I had it my sitting pain was not bad and my penal pain was constant. After the block I had no penal pain and no sitting pain. After about two hours I got a fairly high sitting pain and about the same penal pain. After about a week the sitting pain was gone. The penal pain is still there. The sitting pain started after my prostatectomy. The penal pain has been around for over ten years. The penal pain is not as bad as the sitting pain and but has caused me frequency, lack of sleep, urgency. The penal pain itself I can tolerate better but it is very disconcerting. I would be very happy if the block takes care of the sitting pain because it will allow me to drive long distance to see people.
In reference to physical therapy, my therapist was very good. After my prostatectomy I got the sitting pain. My therapist stopped me from doing the keels and was doing stretching I was getting much better and started doing Kegels and the pain became worse again. I was traveling most of the time and the pain was stopping me from doing some of the travel and I was becoming depressed. My therapist said I had to get rid of stress as well to get better. I was not doing well on this side and the stress was making the pain worst. My therapist was very good.
Best wishes to all.

[Violet M]

Anxiety, I don't know of very many people who had long-term relief from nerve blocks. I see them as primarily valuable for diagnostic purposes. Since you had 2 hours of pain relief, that helps confirm a likely diagnosis but I'm sorry the relief didn't last very long for you.

Jeanne, what type of PT were you doing that cause you to get worse? There are certain types of PT that are not good for people with PNE. Before my PNE surgery, I had to quit doing internal PT work because it was causing major flare-ups.

Violet

[matthewroots77]

Mathew,
Did you get the nerve block? Are you better?
I am about to get a nerve block. I've been suffering with PN for about 15 months. I believe PT caused it as I never had it before the PT. I also sit a lot for work and had Chronic Constipation.
I am really hoping it will help me. I also have a lot of frequency, but I have Interstitial Cystitis. Thanks.

Hi sorry for the late reply
I haven't had a block yet as my pain management guy is not 100% it's pn and the block is very expensive.
I'm going to see a physical therapist who specialises in men's and pn next week,what ever I've got is very mechanical and as I said b4 my symptoms completely went away for a week when I first had it.

[Violet M]

Good luck with PT, Matthew. If it helps that will be great. At the very least, hopefully they will be knowledgeable about PN and be able to give you a better idea of what you are dealing with.

Violet