Health Organization for Pudendal Education

Hi All,

I have been diagnosed by three doctors as having Pudendal Neuralgia as my symptoms fit the diagnostic parameters as set in Dr Roberts, Nates France. Recently went to see different Pudendal specialist in New England. He did a complete pelvic examination which included palpatation of the pudendal nerve which did not elisit any pain. I then went Elizabeth Akincilar of Pelvic Pain Rehab where she examined me and also palpated the pudendal nerve on both ends and I had the same result of no pain, which is described as (-Tinel’s of PN B).

I have "all" of the described symptoms of PN except for pain when palpating the pudendal nerve. I"ve has 5 nerve blocks that were all positive of Pudendal Neuralgia, (pain completely went away after injection)

The pudendal specialist that I saw, said that because I didn't feel pain when the pudendal nerve was palpated doesn't change the diagnosis of PN, because I have all the other symptoms that are consistent with PN. He recommended surgery, (transgluteal pudendal neurolysi. I told him that I was under the impression that surgery was generally only recommended for pudendal entrapment. He stated the it's impossible to know if it's PN or PE until he gets in there. And in both cases surgery can help.

I'm interested in hearing what others think. Please send me your comments.

thank you

Michael

Michael ,
A similar thing happened to me and i was baffled like you. I had very strong pelvic floor muscles before getting pudendal neuralgia and I thought in retrospect maybe that is why I didn't feel pain when the pudendal nerve was palpitated . Are you on any drugs that would mask the pain and maybe that's the reason you did not feel anything ...as for me I ended up having bilateral transgluteal decompression surgery. thinking back I was too drugged and too inexperienced to make wise decisions, and if I had to do it again I would have had just just the right side done where I knew the injury happened , and waited and had the left side done and another time if it was needed. Have you had a 3T MRI done of the pelvic area? I went to New York and had dr. Potter do my imageing which indicated there was scar tissue on the nerve after the first surgery, and I ended up having a second surgery to remove scar tissue which I shouldn't have done because it was only two years after the first surgery. hopefully you can learn from my mistakes. Again I made these mistakes because I was poly medicated and appeared normal but I was in and a pharmaceutical free fall. Good luck finding the answers you need and I hope it helps knowing someone else was experiencing the same thing. Stay coronavirus virus free. Sadie

HHHHHMMMM...

Hello Pud and Sadie

I just saw talk of palpating.... Now forgive me i am at end of my day after medication and drank alot to dull my pain...

I can say that when i had my PNMLT done with Dr Antolak up in Minnisota he freaking HIT the spot when he put his gloves on and when he pressed on the area inside the anus IT was instant replecation of my Pudendal pain.... Then he connected the electrodes and after he did those tests he said he was shocked i was there alive for him to do the Testing electricly of the Pudendal nerves..... He said when i had alot of pain that my Pudendal nerves were being compressed 90%..... I believed so cause at the top of the nerve pain being Pinched it would not be survival for me when that happens if it just stayed that way for say a hour.... Not any tall buildings out here but i would run to the beach and just swim out in the Atlantic right here....
Anyways..... I am here on the website today to lend maybe the last helping hand I might be able to give to the community My doctors put in a pain pump and now has taken away all pain pills... Sooo now there is alot of breakthrough pain especially in between the 4 hours when i can press my pump button..... SOOOOOO i have the only thing i can give to all the Sufferers on this site of such innocent victims.....
Searching and asking friends i have looked for what NON doctor pain help i could find.... Now there is kratom in America and only few several states have made it illegal.... Federal failed to do it cause it is like the only natural way for people with pill and heroin opioid addictions to treat their suffering.... So there are sites where u can find small doses of kratom or what sellers really want to say is their "herbal tea.""" So a old friend showed me a site to get this medicine for alot better price.... So is the only way i could afford to get the med in large enough amout to deal with PUDENDAL Pain

Anyone that would like to look at a link to a pain group that mails out of Virginia i am happy to let all the good people here know.... Since we are in the most need... And they like to keep a smaller circle of patients that really need the help

John,
I see that u joined in 2016 n that is a long time to be in the fight. I am sorry for you suffering and wondering what kind of pain pump they put in, and where?

Did u know they were going to take your meds away when u signed up to have pump placed.

Did they titrate u slowly off your meds or put a pump in n stop your prescriptions?

Try to relax n see if you can find a GP that understands your agony n prescribe you something...anything to help u. . Blessings to u n yours Sadie

Anyways..... I am here on the website today to lend maybe the last helping hand I might be able to give to the community My doctors put in a pain pump and now has taken away all pain pills... Sooo now there is alot of breakthrough pain especially in between the 4 hours when i can press my pump button..... SOOOOOO i have the only thing i can give to all the Sufferers on this site of such innocent victims.....
Searching and asking friends i have looked for what NON doctor pain help i could find.... Now there is kratom in America and only few several states have made it illegal.... Federal failed to do it cause it is like the only natural way for people with pill and heroin opioid addictions to treat their suffering.... So there are sites where u can find small doses of kratom or what sellers really want to say is their "herbal tea.""" So a old friend showed me a site to get this medicine for alot better price.... So is the only way i could afford to get the med in large enough amout to deal with PUDENDAL Pain

I do think, that Kratom is one of the best things, which can help with pain. There are a lot of options and websites, where you can purchase Kratom leaves, but I prefer only approved sellers like this ( url: https://kratomhelper.com/ ). There guys sell Kratom for years, as I know, and I order stuff from them pretty often.

Hey Sadie... I REJOINED in 2016.... my case started in 2005...

I got a intrathecal pump reinstalled in my spine... first time the catheter just slipped out of my spine and for 9 month i was telling Dr Fernandez that i am still in pain and he kept turning it up but cause was just in back muscles the meds did nothing ... Got it fixed in middle of last summer.... And Only JUST 2 weeks ago did i get Prialt put in with some morphine.... Prialt is Sea Snail Venom synthesized .... just this last turn up has it done some good help....

The doctor that said that pump should of been helping... Dr Guarino.... he did a injection dye test and showed it was not in the spine.... and reinstalled..... He and the other doctor before said from the beginning that they were going to reduce my pain pills.... and this time he turned up every month or 2 weeks now alittle bit and reduced. pills... I REALLY been laying the truth of thick that i need the pump to do more or i cant stand being bedridden 24/7 on the bed.... My entrapment has grown worse over the last 2 years big time.... LOT LOT of story explaining that shit...


Thank you for the Hopes....

corey3RM wrote:

Anyways..... I am here on the website today to lend maybe the last helping hand I might be able to give to the community My doctors put in a pain pump and now has taken away all pain pills... Sooo now there is alot of breakthrough pain especially in between the 4 hours when i can press my pump button..... SOOOOOO i have the only thing i can give to all the Sufferers on this site of such innocent victims.....
Searching and asking friends i have looked for what NON doctor pain help i could find.... Now there is kratom in America and only few several states have made it illegal.... Federal failed to do it cause it is like the only natural way for people with pill and heroin opioid addictions to treat their suffering.... So there are sites where u can find small doses of kratom or what sellers really want to say is their "herbal tea.""" So a old friend showed me a site to get this medicine for alot better price.... So is the only way i could afford to get the med in large enough amout to deal with PUDENDAL Pain

I do think, that Kratom is one of the best things, which can help with pain. There are a lot of options and websites, where you can purchase Kratom leaves, but I prefer only approved sellers like this ( url: https://kratomhelper.com/ ). There guys sell Kratom for years, as I know, and I order stuff from them pretty often.

OKAY So i got a kilo for $70 from a guy that has that exact same Maeng Da Red Vein..... i did 20$ 2 day shipping and boom.... so that guy u have sells it for 4 times as much....

My old friend from texas gave me the link..... This guy has been doing it forever... Has 3000 people on his private Facebook group..... Since this is the First good thing happened to me in years i am going to Share With THIS Whole Organization his page.... and wish some of yall can find some bit of Peace..... https://herbal-rva.com/page/1/?s=Specio ... obsn5PFLXM

I wish all of you the best.

$70 bucks compared to $300.... I wish that this place stays up and the Federal Bastard dont destroy a bit of hope

Please share carefully with fellow Pudendal Pain Victims .... I wish some one would of share with me years ago.... I have drank so much Vodka in the last 5 years that i dont know how i am still breathing..... When it said $ 70 i could not believe it but i thought I got nothing to loose and that is worth a try.... So a damn 2.2 pound bag showed up..... Only other thing that helped was the THC Fillterd Isolate but it cost $100 for a fluid oz..... too much to cover the pain....