Pudedal nerve history

[Hungrybirds]

Hi i have had pudendal neuralgia since oct 2002,i first got it through having a bladder infection that was not sent off to the path lab and therefore noone found out the antibiotics i had been given were of no use to the infection i had.as i had never had an infection before i presumed that my treatment was correct and that i just did not respond to it .I went back to my practice and seen a prescribing nurse who presumed the previous drugs had worked and gave me them again.I continued in severe pain and was sent to the pain clinic,where i was given drugs for nerve pain that didnot work.I finally was seen by a new gp who sent off my sample and it was then discovered i didn't repond to it and was finally given a correct antibkotic.sadly this lenght caused what i see as a pain line to continually case me pain.iwas sent to dr baronowski but he didn't actually have the right to have theatre time at the national neuro and i kept being placed under random urologists,who gave dr baronowski their theatre time.i had 3 lots of nerve blocks and was told i probably wouldn't feel anyghing for a few weeks i have since realised was odd,but i never got any relief at all.i finally quit but wdnt back years later and was given sacral neuralmodulation trial which didn't work and was removed.I developed a passable way of coping,as long as i didn't get a bladder ifection,which then sent the pain through the roof.Last year i was given a trial of oral ketamine which i had to take under my gongue and not swallow,this helped a little by making the pain feel further away but i then produced a pavlovs dog reaction and every time a gook it my mouth filled with saliva,which watered down the drug and made it too mild, but also ketamine wasn't a sensible thing to take as i felt i had to lay on my bed because i was scared of falling over.I have now had another undiagnosed bladder infection and am stuck in bed with pain going through the roof.sadly altnoubh my notes state that i always know i have a bladder ifection our surgery uses unqualifid carers who font get to see the notes so nothing was sent off.I am now finixhing a correct course of antibiotic but the pain has not been relieved and i am wondering about going private butunsure as who to approach

[Konagirl60]

This started in 2002? It’s now 2019.

Have you seen a neurologist or neurosurgeon or urologist?

Your timeline is very confusing. I can’t understand it.

I use Compounded ketamine diluted with saline as a nasal spray medicine. It calms my brain as I had true pudendal nerve entrapment....the pain is awful and one requires several nerve pain modulators and anti histamines to calm and make it endurable.

I’m sorry you are in such bad pain. I’ve never heard of pudendal neuralgia being caused by a urinary tract infection. I’ve always thought it was caused by childbirth, too much cycling, line dancing, sliding into a base playing baseball, or due to juxtaposed over used ligaments in our ischial spine....the rectal branch adheres to them and becomes pinched.

I’d try the above doctors. Good luck.