Well running out of medicine... Time ... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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Well running out of medicine... Time ticking away..

Jei-Carter
Jei-Carter

I have stretched out my meds as long as possible but looks like i will run dry around my birthday on the 23rd... I am getting a really horrible present this year... Uncovered Pudendal nerve torture... I really hate these doctors that just treat pudendal sufferers like we are nothing... I have a mountain of failed surgeries and procedures but they still want more PROOF... It is ridiculous how we are treated... Like how many times do i have to go under the Knife to be treated like other patients with terminal diseases...

13 Replies

Hi, i don't understand what you mean by 'running out of meds'? Can you not get repeat prescription. What are you on?

I have been cut off from medicine probably 20 times here in Texas.. the land of evil doctors... I had a long stretch when a very good man called Dr Bobby Witten kept me alive for about the last three years... But he finally moved his practice to South Carolina last year... So then i was switched over a dr that moved into his place in Athens Tx.. I got meds for like 8 months more but I was cut off back in November... It is just how so called Drs are here.... I expected to be cut off so was stockpiling ever since Witten left cause i knew i would be cut off eventually and left to die like happened a dozen or 2 dozen times in the first years i was crippled with this Pudendal Entrapment.... I was just told on monday when trying to switch to a new dr that he doesnt belive my condition exists... Like a dozen doctors before.... It doesnt matter even though i had 3 major pudendal surgeries and several others ever since this Hell started My Senior year in college 2005.... I have been just been completely bedridden to strech my meds out longer... Living in the bathtub also alot to take the gravity off of the Pudendal Entrapment.... I am only still here cause my Ex made me swear i would fight this to the last breath... She made me swear to when after another failed surgery in France i went to see her a last time in Poland.... I am only still here cause she made me... We were practically a married couple when she came over here as a exchange student in highschool... To answer your question i have been on almost everything at one time or another but the primary life sustaining medicine in Clonazepam(klonapin) and morphine for the breakthrough pain....

It all just really sucks cause it is all about the subconscious control of pelvic muscles... On the rare occasions when i actually sleep for7 or 8 hours then wake up i can feel how when i am out the mind lets the piriformis and other muscles rest which basically cuts off the strangling that is goes up to 90% blockage according to Dr Antalok's nerve conductivity test...

The clonazepam actually directly stops some of the tensions signals from the brain to the muscles... That is the only med that really matters for me... The pain is just cutting right through the morphine which is all i really have left... I am such a crazy rationer that i still even have like a months worth of morphine left but with no clonazepam to physically stop some of the entrapment it is too much pain for a human to really take....

Cardinal
Cardinal in reply to Jei-Carter

Have you tried Xanax? If I were you and pain doctors weren't doing their job, I would get a psychiatrist to prescribe me the Klonopin or Xanax. It seems like psychiatrists are more understanding when it comes to treating their patients. Well, at least the 2 or 3 I've seen before in the past.

Jei-Carter
Jei-Carter in reply to Cardinal

Klonopin is what i have been taking for 8 years and have been completly be cut off from... it is the only thing that stops some entrapment.... living hell without it......

Cardinal
Cardinal in reply to Jei-Carter

Why did they cut you off? Is there a new rule about Klonopin? Can another doctor - even a psychiatrist - approve it for you? Sometimes they are more understanding about our need for treatment. Xanax works in the same way, and for some people valium does, so maybe they'd give you that.

Jei-Carter
Jei-Carter in reply to Cardinal

Being cut off is all i have known.... Dr witten kept me alive for more than 3 years but the norm here is to just be treated like dirt....

Jei-Carter
Jei-Carter in reply to Cardinal

i was cut off in november... been spending last months with meds i saved up since draconian laws came into effect here when 2015 started... i knew then it was only a matter of time till the pressure the government puts on doctors here to become more brutal on pain sufferers than ever before... The doctors office is holding me hostage over my mountain of medical records i need just for any Tx doctor to even consider taking me on as a patient.... Ganna have to give $200 in my last blood money to get the records to then take to the ER.... Been trying to get my records since december... cant get a dr up here to transfer them to... They been like well will take about 6 weeks to just start the process... Drs were saying we cant treat you cause there is no PROOF of my condition.... my Pudendal Latency tests are what i need for example.... I should be in a damn hospice or nursing home.... But just forced to die horribly in my efficiency.... The torture from sleep deprivation and no respite from the torture to allow my mind to deal with the torment should have driven me insane by now... My willpower is not infinite... a decade is 9 years longer than someone in my condition should really be able to withstand... If i could go back in time and NOT have wasted my money getting pudendal surgeries and just gone to other countries to get a L4 dorsal root neurectomy was my only real chance... Doing what pudendal docs told me to do was useless... Begging and begging for years and years to American docs for this surgery that WILL completely cure me has been the biggest horror story for me... Finding the cure for my case hasnt mattered cause of the barbaric nature of docs nowadays.... I am a victim of Pudendal Discrimination and that is the absolute truth... I hate this bizzaro world of enforced torture despite my finding this cure myself 8 years ago... I did everything i could but with the intentional deprivement of my one and only chance is the most evil thing i could imagine a person being forced to suffer through...

Cardinal
Cardinal in reply to Jei-Carter

Dont they legally have to transfer the records? Cant they just copy or fax the record for the PNMLT procedure you had? Might you have a copy of it anywhere at another doctor's office or hospital that would be better at sending it? Most of my medical records are electronic and so I can access them from the internet. It's so much nicer that the doctors and hospitals are finally getting them online so we dont have to hope that others will do their job. Ive started making a folder on my computer and also my Google Drive (cloud storage) account of my more important records/procedure reports so that when I see a doctor, if they ask me for a certain record or imaging report, I can pull it right up - either on my phone or their computer. Technology to the rescue, only it would have been helpful if it had been here much sooner. I hope you can get at least the important records in hand or transfered.

Jei-Carter
Jei-Carter in reply to Cardinal

Ya legally they should.... They are now charging 50 cents a PAGE for medical records now... I wanted to just transfer them up here to JPS but they were like.. well 2 weeks before to just get ahold of my old dr office and then 4 more weeks to transfer the records and then maybe some more time... that was 29th of last month... But till they get the records they wont refer me to a neurologist or anything... And that was the dr that point blank said I dont think you have pudendal nerve problem.... So i will have to drive 300 miles to the office that i stored my records from surgeries and everything... Had them before but that was 5 moves ago going from almost being homeless and dead each time... 600 dollars a month for the last 5 years is what i have had to survive on and it has been nearly homeless and sure death i have just been staving off again and again and again ..... They are at the office that was Dr Witten's... I wish i could get it transfered but I would be long dead before i could get it transfered to another office in Dallas Fort Worth... I am like sorry i dont have 2 months to just wait when i got like 40 morphines left... Texas is Medieval... absolutely medieval.... So i am waiting to get word that i can go spill the last of my blood money to this Kocker that took over witten's office/// They just want every drop of that blood money... 50 cents a page... Then when i have my mountain of records i will just go to one ER after another to get a referal to neurologist or neurosurgeon or pain doctor.... But i dont really think i will be able to last long enough to go through another round of begging these monster drs for the one surgery that could save me that the Drs here have refused to do for 8 years.... So i am really just thinking i am getting these records to have next to my body... Cause it is 100% proof of my condition and proof that i have done everything a human can do... I got the proof but it doesnt look like that proof will matter in Tx for another decade or two.... Then Drs will know we have one of the worst conditions a person can have but from 2000 to 2020 it is just a Black Hole of Ignorance and persecution here for pain sufferers.... a dark age i will not see the end of.... 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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