Jackie5: Hi , I have pudendal neuralgia... - Pelvic Pain Suppo...

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Jackie5

Jackie4 profile image
14 Replies

Hi , I have pudendal neuralgia now since 2010. I have had nerve blocks , CT guided injections , and Lapascropic decompression surgery and nothing has worked, I am in constant pain and was wondering if there were any new treatments for pudendal neuralgia , any new information would be very much appreciated.

M

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Jackie4
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14 Replies
charlee4 profile image
charlee4

I notice no one has answered. I am in your shape. I have tried most everything I know of and still have constant pain. I begin to hurt minutes after I am up in the morning until I am knocked out at night. The pain increases during the day. I am not awakened with it at night. I have no life. I mostly stay home. I work in silk floral design and scrap booking, making cards at home. I sometimes work on them to keep from thinking of pain as much as possible. Sometimes, I don't even feel like doing the things I love.

I try to do stretches each day. I am going to a pelvic floor therapist semi regularly. That is my life. I can't go anywhere because that requires riding. I can't visit because of sitting to get there and sitting to visit, same with having others in my home. I do feel alone and desperate. I will keep looking because there has to be something in the future with more medical personnel begin to learn more and more about PNE. I usually get longer distances such as to the therapist and home by riding in the back of the car while my husband drives. We must keep trying to find answers. They will come eventually. I just hope it is not to late for those of us who have suffered this debilitating condition for so many years. I trust you will find help and peace my dear.

pizon profile image
pizon in reply tocharlee4

I am so sorry to hear of your pain I don't know where you are located but I have seen Dr. Richard Marvel in Annapolis MD I was left with some irrataion to my PN du2 prolapse repair surgery and the stiches are interfering with the nerve I go Tue for out patient surgery to have some of them removed if you can go see him he is one of 5 in the nation that do any type of PN surgery

bettyfl profile image
bettyfl

Hi, I had all those also. In April of this year I had what’s called cryoablation. It is ct guided and they freeze the nerve. It has helped. The dr who did it is in Atlanta, GA. His name is Stephen Prologo and he is an interventional radiologist.

anne77 profile image
anne77 in reply tobettyfl

Does he take insurance? I have heard that he does not? Thanks for the info..

bettyfl profile image
bettyfl in reply toanne77

Hi there,

I started getting Medicare this year and they it. I saw him two years ago with private insurance and almost all of it was covered. Best thing to do is call and ask. You call Emory John’s Creek hospital and they put you thru to his office.

Jev1972 profile image
Jev1972 in reply tobettyfl

How much pain relief have you experienced??

bettyfl profile image
bettyfl in reply toJev1972

I received 100% pain relief for the pudendal nerve.

I have other pelvic floor issues so still in pain from those. But the pudendal was the worst.

Jev1972 profile image
Jev1972 in reply tobettyfl

Bettyfl another question... how was recovery from cryoblation? Where did he insert the needle?

bettyfl profile image
bettyfl in reply toJev1972

Hi there,

The recovery was not bad at all. He uses a ct machine so he can see where to guide the needle. It was in the upper part of the buttock. Mine is left sided only, so that's where he placed it.

pizon profile image
pizon in reply tobettyfl

hello was this done in office or at the hospital and did you need anistisha? I just had an o/p surgery done to remove stiches that are causing scar tissue built up on the P/N and the sciatica they were only able to get some of the stiches the others were to deep so now I have to wait and see if it what they were able to remove will help....in a lot of pain

bettyfl profile image
bettyfl in reply topizon

I am so sorry you are in so much pain. I am in chronic pain every day too from other illnesses and problems. I got rid of that and these are just as bad so I understand completely. PN or any pelvic floor and back issues are very hard to handle the pain. It was done in the hospital but not under general anesthesia. Gave me meds they iv to relax me. It was only about 20 min for the procedure itself. He can also do an mrn which is like an mri but it can see nerves. Maybe this could be done first.

svaillantkenn profile image
svaillantkenn

You might try pudendal neuromodulation with Dr. Kenneth Peters. I am trying this procedure and will let you know how it turns out.

Jev1972 profile image
Jev1972 in reply tosvaillantkenn

Could you explain more about the procedure- thx

Lolarufus123 profile image
Lolarufus123

Sorry but I don't believe there is. I have it too and have pretty much given up looking for more treatment or a,cure

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