It is all so evil cause even though i found a cure for my specific PNE but it has been willfully denied to me.... It is much much worse than having PNE and dying with not knowing there was a cure... I have been kept intentionally in this torture chamber just cause of the medical politics that are a perfect storm for this decade that i have been brutally crippled....
This hell is just so ridiculously cruel i just want it to end... Even though i went through insane hell and found a cure it doesnt matter to this medical community... It is cruel and unusual torment beyond the the reach of comprehension... It is so rare for a PNE patient to get healed but the fact that I found the exact spine nerve root that controls ONLY the entraping muscles and being Denied again and again the right to be cured is so insane I should be a raving lunatic... but i am not... Comprehending a decade of Enforced torture due to medical politics is such a evil curse i have been forced to bear.... I wish my neighbor hadnt found me near death a year ago and taken me to the ER... I posted that experience here and the Universe was basically telling me everything was alright and that my torture was at a end and then I was forced back into this Fight at that evil ER... I wish i could leave my body to medical research for this condition but we dont get that right like cancer and other deadly disease victims... We are victims of a whole other order of magnitude.... pitiful beyond these doctor's ability to fathom.... The Depth and Measure of Injustice is a Black Abyss.... I just want to go to the light and refuge from pain that i saw a year ago..... It was a beautiful release from this horrid mortal coil that i am trapped in.... It was a real shame i was brought back just for another year of sorrows.... I just want that freedom i had a fleeting glimpse of... Since my cure is being forcefully withheld from me I want to lay down this impossible burden.....
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Jei-Carter
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A 4th lumbar dorsal nerve root neurectomy is my cure but this ridiculous world made this surgery practically impossible to get in America after the 90s... If i had been stuck down a decade earlier i could of been cured but since i was struck down in 2005 I am my cure is Denied... Such a pitiful story... A Pudendal Sufferer that found his cure all by himself in spite of the Medical Community not because of it.... But it doesnt matter that i found a Complete Cure for My Pudendal Nerve Entrapment cause I was cursed to of been born in Texas... I wish that my death would atleast have some meaning in advancing Pudendal Patient Treatment.... But i am denied even the dignity of being a guinea pig in advancing Pudendal Treatment...
I agree with you that it is all very frustrating and stressful that there is not a policy, guidelines or education for doctors to deal with patients when they seek help with pelvic nerve pain. None of us have been given direction from GP's and the medical profession and usually spend years going from one specialist to another in the hope that some-one is actually going to be committed enough to take you seriously and order the MR Neurography first of all to diagnose you rather than refer you to a pain management specialist who may or may not be experienced about assessing if you have pudendal neuralgia or pudendal nerve entrapment. I would suggest in your circumstances write a letter of complaint and ask why you cannot have this procedure that would cure you and ask them to come up with another solution because your pain is beyond physical endurance and effecting you physically, mentally and effecting your quality of life.
pain is back... goodbye moment of clarity.... was nice seeing you again lol... Is a friend i see less and less till my body brings me back to the almost passing state.... the answers shift out of focus most of the time but i know there is the state where it all becomes so clear...
Hi Jel-Carter, You think that the Promethazine is helping you but it is actually causing insomnia, hallucinations, and alters your state of mind and ability to think rationally. Please google this medication. I think being on this medication every-day over along period of time is making you depressed and think morbid thoughts.
So - the doctors will not perform the operation you want as they are no longer allowed to do so - probably because it will cause more harm than good or is even dangerous. I think first of all you need to go to your GP or the emergency room and tell them that you think Promethazine is causing these symptoms. ( You can not just stop this medication - it needs to be done under medical supervision. What I think you need is an urgent referral to a pain psychiatrist. You need to speak to a professional as to how your pain is effecting you. Also google The GW Medical Faculty Association, Pudendal Nerve Terminal Motor Latency Test contact details are given. Ask there advise on the Pudendal Nerve Test and hopefully they can confirm if it is definitely the pudendal nerve, then take it from there. The GW MFA is in Washington DC. You could ask if there is any where near you to get this test for pudendal neuralgia. Please get your self sorted out! All the best, keep in touch with us.
i dont take promethazine daily... just when i know i am going to start pucking to death... My morbidity is not due to that... Like i said i completly detoxed myself all by myself and that is absolutly nothing compared to the nerve problem... It is the fact that i know exactly what the cure is for my pudendal entrapment but being denied all possibility of getting it...
and i wish that i didnt know that stopping signals through the L4 dorsal nerve root totally controls my PNE.. only had somewhere above 100 blocks that completly cured me for 6 hours... and the first rhizotomy burned out the nerve for a month in which i was completly cured... it was immune to the following 30 rhizotomies but the first one that stopped my entrapment completly was 100 percent effective... there can be No more possible harm done to me now... all the pudendal surgeries WERE extremely harmful... is sad to hear someone on this board that cant understand the situation.. I dont care if there was a chance i wouldnt work... There is a massive chance i would work ... Even if it somehow made the pelvic muscles entrap even more that wouldnt matter... cause my earthly existence is at absolute zero quality of life... Only the spark of my innerself remains... If i woke up and it was worse it doesnt matter to sufferers that are at my level... Why else get 3 major pudendal surgeries that only have at best a 10-15 percent chance of working,,, When i have been temporarily cured more times than i can remember then any chance is well worth it...
i had 3 PNLTs... my nerve is 90% choked off at its worst. My mindset is completly practical in no need of sorting... Most everyone should be totally insane after a decade of this... I am all to sane of my situation... Anyone more realistic wouldnt still be here in my shoes... Still being here is a fight against everything sane when i given my situation... I am not mad .. is all i know really...only the most practical sane person could survive on 600 a month for half a decade.... Your morbid is another sufferer's complete practicality... And like i also said the only reason i would still be here is cause i stumbled upon my complete cure so so long ago... Without that knowledge even my fortitude would of given out bout 8 years ago... But I WAS CURED for a whole month... Cause i still remember that and the countless 6 hour cures are why I held out any hope... Only cause of that have i been able to keep my vow to my ex... I have fought to the last last breath... Not my fault this took my life away... Was All me that even discovered my condition and was ALL me that narrowed down which nerve root controls my PNE... I know everyone's PE is different so i know this cure might only apply to some sufferers... I know everyone here is skeptical but dont deny other's their truth that they have found... Its a brutal truth but is still the truth///
I just posted this is another thread, but I'm reposting here. There is an interventional radiologist in Atlanta, Georgia at Emory Johns Creek Hospital who is curing pudendal nerve pain through image-guided cryoablation. I know that's probably too far for many of you to travel, but if you've suffered for years with the pain it might be the relief you're looking for. 90% of PN patients treated by Dr. Prologo are pain free and it's a minimally invasive procedure; you're in and out in one day. I'm a journalist who just did a story with him and he is very passionate about what he does. Through image guiding he's able to locate the pudendal nerve and insert a tiny needle to freeze it. Freezing it and thawing it shuts down the nerve so it stops firing off pain signals. No big side-effects, just some soreness. Here's the study: jvir.org/article/S1051-...
He uses the same technique to cure phantom limb pain in amputees.
thanks very much Jess... I totally agree with what it says how the so many nerves are not accessably to most pain drs... Procedures available through most pain doctors are very limited indeed... The one doc just expected a expensive spinal stimulator implant was just supposed to be it and i should just handle all the pain with it alone.... Wires stuck right in the middle of my scoliosis curve that was caused by the last lumbar transverse process that fused with the sacrum on the right side... Making the right pelvic muscles grow and enlarge till PNE resulted... Wish i could afford to go outside Dallas Fort Worth anymore....
That sounds so incredibly painful. You've been through so much, but don't stop looking for answers and solutions. Advances in medicine are happening so quickly. There is still a ways to go, but just look at how far medicine has come in the past 20 years.
Yep it is true that knowledge of nerve information and technology are at the dang turning point... It was in 2008 2009 that i got one injection into the piriformis next to the pudendal nerve on the right side that numbed that muscle area just right that it released my entrapment completely... That was when i was getting the tests and procedures in California... This was with Dr Filler who has had successful operations... The reason i gambled about $23000 with his new technology.... He was and i guess still is doing his special 3D MRI that he designed to take depth images of the tissues in the pelvis... I spent the $3000 for that 3D MRI... It was really interesting when he was showing how the Spine transverse process on the right side that fused with the pelvis had made the right side muscles growled imbalanced.... His MRI tech showed the pudendal nerve like no other of the dozens of regular MRIs i had done... He showed me the nerve as it is in 3d how it passed through the muscles... That was like a Star Trek moment compared to every other test... I was like Wow... Yeah i see lol... Then a couple days later got that test injection that freed both the right and the left pudendal entrapment that was forming at that time.... It replicated at the source what every 4th lumbar injection had done for me... That was the one injection i had next to where my pudendal entrapment is... The only bad thing is that then i spent the $20000 dollars for his special surgery... He tried to fix it by cutting out a big part of the right piriformis that was twice the size of the left piriformis... This is another thing he showed with his 3d rendering mri tech.... That was the first of my three big pelvic surgeries... And they are a real dang gamble... I remember all the dozens and dozens of cases that i read about on previous PNE case studies by the patients of all the pudendal doctors... From all of that it seem like Filler for example has about a 20% success rate... That ranges on how well the entrapment was effected... But he has had special successes and advances... Despite the failed surgery the $3000 dollar filler mri showed the tissues very very well... Like Sci Fi compared with regular MRIs that see almost nothing... He had that stuff freaking patented and he was going to make his fortune from his invention though... That was like a Las Vegas High Stake Gamble... PN surgeries are such a dang gamble... My entrapment is just extremely extreme.... Caused by the spine process secretly shifting how the pelvic muscles grew... Basically the right side grew bigger and this pulled and pushed both the right side first and then the left side by side effect..... Phew... I remember how on the other sites every post was about how each patients experiences were with one pudendal doctor or another... That is where i saw that getting new pudendal surgeries were a strategic gamble on possible success....
Haven't you tried using a TENS machine on the area you feel is causing your problem? If you use it regularly you could really notice some benefits. If you don't know about TENS machines look it up.
yes i have... I had a internal platinum battery the size of a wallet put in back in 2006... It made huge electric vibration in the right pelvic area but it was not worth the trouble... Sure if i cranked it up to level 10 it almost was too strong to freakin walk... It was no answer... And when i went to get surgery with filler in california in 2008 2009 i had to get the metal leads pulled out of the middle of my spine... That was the real problem// My scoliosis was caused by the same thing that caused my pudendal entrapment... The vertebra transverse process that formed a Bone Jack made my whole spine form a big curve in the middle... Just happened where they had to put the leads to cause shocks in the pelvis was right in the middle of my curve.. My back hurts like all hell... Well the leads caused all that curve to tense up and caused a ton more pain there... a catch 22.... People here think i havent done all i could but i have done EVERYTHING... Only My Surgical Procedure can cure me... I found it all by myself... Directing the neuro doctors which nerve root controls my evil pelvic muscles that do nothing but cause PNE... Still have that battery in a flesh pocket above my right hip... Just got back from the ER... You know your conditon is bad when just describing it scares the doctors i went to see in the first place into calling the Police to take you to the ER... Has happened more times than i remember... To get back to my truck had to catch a bus downtown then another to segregated west fort worth and then a hour walk to get back to the clinic i was at first....
Okay, I wasn't talking about an internal machine, just a TENS machine with electrode pads you stick on your skin. They're not expensive: amazon.com/s/ref=nb_sb_noss...
You may well be right about the cause of your pain and that surgery could help (you're the one living with it, so you're the expert) but my experience is that putting all your eggs in one basket with something that's hard to get done is just mentally really stressful and does your head in.... You say you've tried everything, but with due respect I bet there's some other things to try - there always is. Get some other options going as well, while you're pursuing the surgery idea... What about physical therapy, like seeing a physio or osteopath? Can you do stretching exercises or any movement which helps? I've devised my own stretching which over the course of a few weeks has helped. Acupuncture? Massage?
I like to give myself options because, like you, doctors really haven't been on my side.
i am moving to Florida.. my family that ostracized me after over the counter sleeping pills made me hallucinate. i just wanted to sleep some and be free from the hell for a few hours... it built up in my brain though... I hallucinated that there were disabled dying people in my house that were begging me for help.... so i called 911 of course.... but they sent the swat team.... was all peaceful but my family abandoned me for the past 6 years after that....
Yea i got my picture up here instead of the stupid smile ... I dont have any reason to smile so it was not accurate lol... I can still laugh but only at the absurd,,, which is all i know... a ludicrous position.... and i want my assualt rifle in my picture lol... is always ganna be the last resort lol...
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