It has been a long time since i posted about all of this... I was struck down with it in 2005 and have had a dozen surgeries -- hundreds of nerve root injections and had probably 30 rhizotomies ... I have held on for a decade now and my condition is at the extreme end where most people probably would of stopped fighting in the first year... After my last failed pudendal surgery in France I havnt had anymore surgeries... Only reason i am still here is cause my Ex made me swear to keep going as long as possible... She is from Poland and i stopped by there after trying my last shot in France... Just by not dying i have done more than any guy could of done for someone i cared for.... I am really at rock bottom... Destitute after spending every cent on doctors and surgeries.... Had to live on bout 600 bucks a month which is impossible for a healthy person.... Just barely kept from being homeless time after time... I just found out that i got a ticket back in 2012 and it went to a warrant... The unbelievable hell torture makes it impossible to do anything... Doing any activity is like plucking on trip wire hooked up to my pudendal nerve... Only by doing nothing can i keep from having to eat my gun every day.... Just learned bout this warrant which i cant pay for... Same thing happened a few years ago since i cant afford to fix my truck to pass inspection... Got stuck in jail for 2 days and was about to die from the agony of no meds... So now i got the threat of getting thrown in jail again when i have to drive to get food or go to doctor in s few days... Knowing that extreme agony i will be put in just cause i am so poor cause i am so crippled is horrible... So i dont know if i will live for another week or not... I am carrying my grandpa's old 38 as my only escape ticket from the threat of being locked in a torture chamber with no meds.... The Law has really killed me... The one surgery i found that might help me is illegal to Doctors nowadays... I want a neurectomy of my right side L4 dorsal nerve root cause when i got that one root deadened with lidocaine it would Completely cure me for 4- 6 hours... The very first rhizotomy i got of that root actually CURED me for about 3 weeks then the nerve grew back... That is why i had Dozens more but only the first one worked on the nerve root... I begged every doctor for a neurectomy but cause of all the legal bullshit every doctor is too scared to risk it... Even though i found out that root only controlled whatever muscle group crushes my pudendal nerve with no bad side effects... Just that one root knocked out could cure the entrapment to both my right and left pudendal nerve... I know the possible risks but i would of taken the chance but medical law illegalized one possible cure for some pudendal cases... I am posting this since it looks like i might be forced to die so i am not thrown in a cell and thereby locked in my own personal torture chamber with no meds to counter the pain that only fellow sufferers know is unlivable at a certain point... Sincerly John Walter Carter.........
Severe Pudendal Nerve Entrapment Suff... - Pelvic Pain Suppo...
Severe Pudendal Nerve Entrapment Sufferer..
You story sounds torturous. But please go to your local A&E or call the Samaritans helpline. There must be something that they can do or put you in touch with organisations that can help. I know this condition affects every aspect of life, but don't let it beat you. I don't know where you live, but please call for help. Keep in touch and let us know how you are. My heart goes out to you. Xx
thank u for caring... they say the bond is 700 bucks but that as good as a million to me... I cant even afford food... Only alive cause of the 99cent store... eating out is 50 cent taco from jack in the box lol.... Here is Texas is the Black Hole of Pudendal Knowledge... I had to diagnose myself after bout a year and a half after a ton procedures... a dozen so called neurologists in a row didnt could connect the dots here... After so many years of this I am burned out so much... I am only here cause i wasnt a quitter... I had surgery in here in Arizona in Los Angeles and finally in France... I was about to graduate in 2006 and travel the whole world as a English teacher.... My life money all went to fighting this most evil of diseases... My world now my is a efficiency apartment that was a just a crappy hotel... I have broke any endurance record that could be given for this... I cant break the laws of financial physics forever... I dont know how i have survived on like 6000 a year for over 5 years now... I am posting cause will be locked up for a few days over a stupid heat sensor that i cant afford to fix... My truck just broke down and i owe my friend a 1000 for getting it running again just so i can make the 250 round trip visit to my Dr every month.. Triplicate medication has to be gotten monthly here now.... Only cause of 2 family doctors that i have been able to stay alive last 4 -5 years now.... Everything is being made more and more impossible.... Being under threat of being basically thrown in a torture cell by my own government is more than i can handle now I know... The US is basically like Al Qaeda that will abduct me and torture me when i have to drive soon... I almost died last spring... I was just convulsing and throwing up to death basically... BUT... I had the white light becoming one with the Universe near death experience... It was actually like the best moment of my life before i was wrenched back into life at the ER.... I literally dying in a ditch basically... But another dimension was opening up and made me feel that it was ok... There was nothing to be scared of when this peace enveloped me... There is something that we only get to see when we are right at deaths door... That is better than the Government putting me in the worst torture chamber possible on this Earth.....
Here is my near death experience i typed up for facebook last spring.
Well i guess i will share something since it was kinda a revelation for me... I had a near death experience several weeks ago... I have had near death experiences but those were near instant experiences when i would of gone in a instant in a crash.... But this last time was when my body and mind were brought to the edge and I had one of those experiences where I was seeing into another world that only appears when near death.... My body was shutting down, sick of anguish and suffering from this chronic nerve condition i have..... I have to take so much medicine my blood would get a Vampire High.... I hate the meds and wish the hundreds of procedures and dozens of surgeries could of saved me... Dying from sheer pain is not fun at ALL.... But with this last experience of coming so close to the edge I have found some comfort... Cause there is a truth to all those stories of seeing something that can only be seen when u are near the edge.... A different world that begins to open up when spiraling towards death... Like a extra dimension that we simple cant see in our normal lives. It was my neighbor that was around when I was just convulsing on the the ground and completely unable to communicate... I just slipped into this state after being sick for a LONG month... It was when a HUGE storm swept into DFW ... When a wall of water came through with a bunch of tornadoes.... I remember the way my mind just started to let go from my suffering body.... However in my situation I have just had to learn to just take the pain and be a man. So when i still had some control i didnt immediately go to the emergency room.. My Bad... Cause My neighbor took me to Hughleys hospital which most everyone here knows is a death trap... But before that was a crazy ride... Time Stopped Flowing in any earthly way... It felt like a eternity when I was slipping away... Reality became a wild Loop and the passage of time pretty much stopped. I have always strived to be a good guy any way i could. So I dont know what darker souls may see. But I saw the light that u hear from all the stories.. My neghbor was patting me on the back a trying to tell me that everything will be ok while he was taking me to the emergency room. I remember how there was a rainbow that came out after the storm... A huge vertical rainbow. I remember Josh saying hey just look at that rainbow man.. I was tripping hard.. I was seeing so much light that when i looked over at him in the driver's seat I thought he was a Angel or something trying to talk to me... The worry of death completly fell away... What i was seeing was saying that It Is OK... Dont worry...... My experience was telling me that it is ok to let go... I was letting go.... Death did not seem like any kind of scary thing... It felt like the world i was seeing was saying that whatever happened it was not a bad thing... I felt at peace with the situation... On that wild drive reality was spinning out away but a sense that that was ok enveloped me... I tried to open the door and just go. But i was buckled in so i couldnt... I wanted to go with the light... I was Ready... I actually wish I could of let go cause i was at Such Peace with it.... To bad I got to the hospital cause when i was wrenched back into life it was so violent compared to the peace that I was feeling... I was mostly unconscious when i was hooked up to the machines and forced back to life... Light and Peace felt way better than being brought back into the Fight... Coming back to the world was a horrible experience while when I was Leaving it everything felt alright.... Going from the expanded dimensions and back into the few that we can see in our waking world was sad... Yet being able to look back at the experience and see that it was such feeling of revalation is a good thing... Death itself holds no feelings of foreboding anymore... I learned to not fear death long ago but to be given the sight that the experience itself felt like a good thing is a comfort to know now.... So here i am putting my view of the thing up for everyone to see... It feels like I should share that I Did see the Light in the Darkest Situation... There IS something there at the edge to see.... It was beautiful... Full of light and a feeling of contentedness... Not anything to Fear when i was there... That is something good out of the bad... Light where when before it felt like there was darkness... Peace at the End of our Struggles... A place to rest after a life of effort... Not a Bad Thing at all....
So after that I feel different about things.... Last time my ticket was 600 and 2 days payed for that somehow... It felt like forever and just left to suffer... thinking of possible 3 days i know just what the level of Hell it will be...and i am even worse off now than 2 years ago..... I stay bedridden on my old Temperpedic 50% of my time with alot of medications... They dont care in jail... I have got 3-4 tickets thrown out since then cause i classify Invalid now... I can barely just stay alive now... just barely... Being thrown onto concrete with no meds is a hell worse than dying... But this is a old 2012 ticket from Kennadale which is the most evil little PD in fort worth.. It went to warrant... I think i was having to move then and was almost homeless... I was barely existing then.... The whole thing is just evil... This shit is worse than cancer i think cause atleast cancer kills u eventually. And people and doctors know about it... No one knows anything about this here even 10 years later... Medicine is only harder to get now also... I can only hope i can make my trip at the beginning of this next month and get more medicine....
Well anyways... Like i said I havnt posted in 3-4 years since i have had nothing but bad news.... I am up here leaving my post for posterity... I dont know how many martyrs and years it will be before we are treated like human beings with other possible terminal diseases... Just because this disease is so horrible people dont want to believe it is real is not humane... This is the one of the worst wars a human being can be cursed with... After so many years in a complete life and death struggle with this I am soldier of suffering... I wish i had been lucky to of just gone to one of our normal wars and been killed.... 10 years has been a freaking eternity to battle with all the rules set against you... I dont want any pity - just a little respect from the war that we are forced to fight here....
I have five years of PN---I know what you are talking about! In agony all the time! No solution!
Will pray for you! God Bless!
trishj46
thank you trish... only fellow sufferers can really understand each others situation...
I see you're in the Dallas-Ft. Worth area? There is a wonderful doctor in Dallas and Addison. He is an anesthesiologist and neurologist named Dr. Aaron Lloyd. He does the new Iovera procedure (numbs your nerve using a type of cryotherapy/freezing mechanism), and is supposed to be one of the most regarded physicians in the country who use it. I know he has experience with doing pudendal nerve blocks, and when I spoke to him some months ago he was willing to try doing Iovera on it. I think he's done other nerves in the general vicinty. Here is his number: 972-572-6101. You can also google his name to find the website of the practice he's with, Pinnacle Pain Medicine. Let me know if you get it done and if it worked out. I may fly to see him, but think I have my nerve under control now (finally after 5 years of hell).
Cardinal how did you get your nerve under control?
Hi Mommalyn,
Well, there are many different causes of pudendal nerve pain (PN), so the proper solution depends on what is causing it, as the pudendal pain is a symptom of whatever the actual problem is. In some people's case they have an entrapment of the nerve in alcock's canal or between ligaments (PNE). In my case, I had extremely tight muscles with bands of knots in every pelvic muscle, piriformis, glutes, etc, and the tightened, spasmed muscles were/are compressing the pudendal nerve on both sides. It took 10 pelvic floor physical therapists (besides the 30 or 40 doctors I had seen) before I found one who actually knew what the heck she was doing, and even then it took 2 years of internal pelvic physical therapy before I finally had a big breakthrough recently. As we have now worked together for so long (twice per week for most of the 2 years), our communication and her knowledge of my body have now progressed to where we have been able to more effectively get each muscle to give up its strangle hold on my nerve. We have also been able to pinpoint the couple of muscles that seem to be the worst (bothering my nerve the most), as well as the factor that makes them spasm back up after her treatments.
If anyone else thinks they have PN pain, or other pelvic floor pain, due to tight, trigger pointy muscles, I would encourage you to keep trying different PTs until you find someone who is a good fit. I was surprised to learn that there are so many who don't know that internal trigger point therapy is the method that works. Some tried simply putting heat pads on my butt. One would put her hand down the front of my pants and tell me to breathe (and repeatedly would yell at me to shut up if I tried to ask what she was doing). One mostly would press externally on the center line (crack). A couple tried internal therapy but said that since the first two sessions didn't fix my problem, it wasn't working (BS - it takes much longer for bad cases like mine). So find a PT who is truly a gem and stick with her for a while. I have not been able to work for the majority of the last five years because of this (even though I take methadone 'round the clock for the pain), but now I'm at the point where I am ready to go back to work part time and possibly soon even full time.
yes pudendal pain is a symptom of muscles grown out of balance alot..
Well, a few different things can cause pudendal pain, but yes, muscle issues is one of the causes.
Pain, suffering, financial hardship and medications these are contributing to your depressed state of mind. Please try talking to a doctor and a priest and start making positive decisions to get the help you need. At least you reached out to this site. We are here for you. keep in touch, a fellow PN sufferer.
i talk to the doctor every month bout how depressed i am from one month to the next... She can't control the poverty that is the direct result... thanks cvbn
Google David McCord Freedom From Pelvic Pain. He had 3 pudendal surgeries. There is also a closed Facebook group called pudendal hope neuralgia
Thanks for the replies... I posted alot on a old PN forum... Yes I am depressed... The condition will not give me the breathing room to improve the situation.... Being persecuted for being poor due to the condition is something beyond my ability to counter with sheer will power... Only through sheer will power have i lasted so long... Will is the only way to overcome but everything has it's limits... Having to hide till hopefully i can get a bail bond this next month but i dont know if ill succeed... Gatta drive to my doctor on monday then back and to the pharmacy just to make it... I will have to risk my life to do that with the threat of a torture chamber just for doing what i have to do....
I know for sure that stopping the right pelvis muscles can relieve my condition... When i went to get surgery in California from "Dr" Filler replicated the results that L4 dorsal nerve root blocks would do... He made a lidocaine injection into the piriformis area and that release my entrapment for bout 5 hours.... The surgery failed to release what the injections can do.... All three pelvic surgeries failed to release the right tension... My condition began from a condition that warped my pelvic muscles somehow... My last spine vertebra started the Domino effect... The Right Transfer Process bone that sticks out from the sides of our vertebra calcified and grew over my life... MANY people have last vertebra that fuse with the sacrum... For me it was just on the right side... So over my life it was like a car jack forming on the bottom right of my spine... This caused weight and strain to be transferred wrong for 25 years till my condition went off like a Time Bomb.... Filler said my right piriformis had grown almost twice as big as the left because of the weight differential cause by that last vertebra..... That is what killed my life... I had the transverse process amputated off bout a year after the time bomb went off cause it felt like a Knife was jammed into my sacroilliac joint... exact proof of my Car Jack analogy... A simple ex-ray showed this and if it had been taken out sooner it could of stopped the pelvic muscles from being messed up.... maybe this will help the NEXT generation with this condition but we are still in the Medieval ages with pelvic surgeries... Brain surgery seems to be easier than pelvic muscle surgeries... i know they have more success rates than my three Major Butcher operations.... I have been a big guinea pig for this condition...
and yes DFW area... Have to drive to east texas on Monday to my family practitioner... they kept me alive these last years after all the pain doctors and neurologist left me to die probably 2 dozen times... Gatta risk my life to try to get my refills... maybe ill make it back but it is all a big IF right now... Big IF IF i can just do what i have to do...
Hi John, I can sympathise with your story. You can read my experience in this post: healthunlocked.com/pelvicpa...
Your description of torture is a perfectly appropriate one, I know.
Thankfully I've not had a similar fine you mentioned on top of this, but I know that with the physical symptoms the fine seems like the last straw. I know you'll find a way through, as you've been through so much already that you must have a lot of strength and mental skill to draw upon and negotiate a way through.
Don't jack in in just yet. (Sounds like I'm saying that to myself as well... :S)
I do think it would be helpful for those reading if you can say (1) how and when this all started, (2) who you've seen regarding medical people so far, and (3) what scans/tests you've had.
Will be thinking of your situation as I carry in through the day.
thanks socirul...here is more details but still just a fraction of my story...Yes it feels like the last straw that seems to break the camel back... That is how countless situations have felt like again and again... I am NO QUITER... i would of been gone in the very first month when the condition just came out of no where and exploded everything... I was a hopeful person... It is the hope that i found that made me keep going and trying... I FOUND my Actual REAL Complete 100% Cure for my Pudendal Entrapment before i ever learned enough to correctly diagnose myself after going through countless doctors and procedures...
I would of quit if I had not found out that blocking the signal from just the L4 Right side dorsal nerve root controlled my pudendal entrapment... 99% of pudendal sufferers dont experience a 100% cure... The word CURE is completely rejected by pudendal doctors cause they know their success rate's are SO LOW... It was just through process of Elimination that i discovered that my L4 nerve root controlled these muscles somehow... I had almost every nerve on my spine test blocked in the first year... Long before i diagnosed myself.. Then had a pudendal nerve block finally that proved it was the pudendal nerve that is being choked... Neurologist had no idea what my situation was or why doing the nerve root block would stop something somehow... None knew anything... When i had the first rhizotomy that burned the nerve out for a whole month and cured me 100% temporarily I thought my life had been saved... When it wore off after 3 weeks it was devastating... I lost count after 30 following rhizotomies that tried to stop the nerve like the first one did... I would get the lidocaine or marcaine injection that if applied to the root correctly would release the entrapment... After a hundred of those procedures I lost count... I dont know how many times another doctor would try that block to then try another rhizotomy...
Only other sufferers could possible understand my frustration at actually finding a real temporary cure to the condition only to get no permanent cure... The Pudendal Docs just wanted to do their Major pelvic surgeries... Telling me that was what i had to do if i wanted to help my condition... I dont know why Dr Filler's ,Dr Hibner's , and the french doctor's operations were all complete failures... Seems heart and brain surgery are possible but pelvic surgeries are a big roll of the dice... like 10 - 20 percent possibility of any improvement... I read similar post on the old pudendal forum that disappeared years ago...
I havent seen a exact match to my results but the majority of pudendal sufferers didnt get ever single nerve on the bottom half of their spines tested like i did.. I know my situation is not a fluke... I just had ever dang nerve tested... When the root was blocked there were no bad side effects... So in me those blocked muscles have no function whatsoever except to torture me... It is wild i know....
I cant remember all the exact tests i had... I had them all pretty much... The torture completely destroys my ability to remember right....I had taught myself Japanese before i was crippled... Would of been on my 5th or 6th language by now if i had graduated and started teaching...have just been existing after I ran out of money after my European surgery... I almost got a neurectomy in Poland right after that failed surgery...But 4th doctor involved, the anesthesiologist, refused to do the procedure after i got green lighted by the first 3... American doctors wont do it just cause they are scared and that legal cowardice has spread to most of the world now concerning neurectomies... I would sign my life away completely.. I know cutting nerve roots is risky but through countless experiments i learned this root doesnt control Anything Else important in my case... My last vertebra is a extra vertebra that partially fused with the sacrum forming a evil spinal car jack... In other person this exact root might be technically one vertebra different than mine.. When i had my pudandal nerve latency test in Minnesota it showed that when my pudendal is aggravated it is 90% choked out... I have a huge curve in my spine that was caused by that last vertebra fusing horribly wrong on just the right side jacking up my body weight transmission... Causing the pelvic muscles to grow way different than they should and causing the Tension.. Which chokes the pudendal somehow... Pudendal doctors dont really even know how the muscles groups work exactly or one of the surgeries would of worked atleast a little bit... Before correct diagnosis a pain dr installed a spinal stimulator that put the metal electric leads right in the middle of my spine curve... That would make electric pulses in the groin to try to suppress the pain.. It was no solution and caused horrible pain in my Scoliosis curve impossible to live with... Still have the huge battery above and behind my right hip... Had to get the metal leads removed when i had to get another MRI for another Pudendal surgery in Arizona... So there are more of my basics.... I was 23 not 25 when it all started... 33 now... I can hardly remember how it was before being crippled... My existence is more like a completely beat down dog than a human existence... My near death experience above was the first time i felt human again in a whole decade... I am a nice guy but am beat down lower than a slave... I only fear the threat of this pain when unmanaged-unmedicated which is what i am under threat of right now...
So how are you doing now? Have you had a 3T MRI or MRN of the pudendal and dorsal penile nerves?
lol..Dr Lloyd's office. that damn office wouldnt take my blue cross/aetna or medicaid... the medical system here is ridiculous... It has been trying to kill me since this crippled me and it has left me to die so many times i lost count...
Well. It is another Armageddon day tomorrow... had to wait this long to see a dr here in florida... Soar pain management... went to florida pain management weeks ago but that dr was The Most evil i have ever Experienced in my decade of hell... He actually said that Pain Medicine Causes MORE pain.. Like he was talking to a Idiot... I am no Newbie to pain management... I knew exactly the game he was playing... and guess what.. he just wanted to install another spinal stimulator in me to get the tens of thousand dollar surgery and device payment from a insurance company... Would not consider any treatment at all.. Said if i dont have cancer i dont need any medicine... can u believe it.. I wish I DID have Cancer.... It atleast puts u out of ur misery at some point....
I refuse to get my hopes up anymore... So i expect the worst tomorrow... anything else would be a upper then... I am kinda just psyching myself up to end my suffering myself... And just like all of u guys have warned for years the nerve pain has progressed to now the nerve is entraped somehow so that it can get aggrivated to causing anus pain like a red hot poker it jammed in there... So when trying to defficate and if the muscles used for it are spasmed it makes the anus part of the nerve fire off... Has gone FULL Bore in just a few months... Reminds me of how 10 years ago there was Nothing and then the scrotum pain flared into full force... Well when it does decide to go off it is absolute Suicidal pain... So i got no choice but to be competly bedridden pretty much... walking a hundred yards or going up these one flight of stairs will doom me pretty much for a whole day... Only by Completely staying in my efficency and doing absolutly nothing have i managed to stop whatever part of the nerve that controls the anus sensory function have i managed to stop it from going of several times a day or continually if i do anything really... Sigh... And remember everyone i Discovered my cure LONG ago... to no effect... Cause we are so discriminated against and the ignorance is so entrenched that i couldnt get any experimental treatment of the L4 right side Dorsal nerve root... Which did 100% control my entrapment in the pelvis... I am trying to get a cryo treatment of the nerve since the root became Immune to rhizotomies after the First one Cured me for a whole Month... And since Neurectomies are banned in America because of medical politics.... Wish my family hadnt destroyed my relationship with my first polish girlfriend... I might of been able to of gotten the surgery i wanted in eastern europe eventually... Her and her doctor husband came closest to getting me the surgery i needed over there after my failed surgery in france... The 4th dr in that attempt bitched out though... If i could go back and started of looking for surgery in far off countries i might of had a chance... WELL... It is a Fucked up world... Not worth a shit to us... Will see how things go tomorrow... I cant expect much... I really just want to have another glorious white light experience like when i almost died over a year ago now... What i think about is what way to die in which i will get another huge dose of DMT on my way out... So i am thinking about opening my veins... I just want to see that pure white light again which takes away all fear of death and makes you feel at the most peace that any human can experience... Just want to go with that pure light and that feeling like you going to join with god... Even if it is a trick of brain chemistry it is a absolute spiritual experience... It feels like god is there... Welcoming u into the next world....
I have been tortured severely for 11 months with pudendal nerve entrapment. All medicines and nerve blocks give no relief. Now I am going to try radio frequency therapy. None of the hospitals in Pittsburgh, where I live, do pudendal nerve surgery. The only ones I found are in Maryland, New Jersey, and California, Two of them don"t except health insurance, and I am already in dept., having tests and trying to get rid of this terrible pain. I fell so lost. Help
I have the same horrific problem! paintedreality_17@yahoo.com
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