Horrendous nerve pain in bladder

[andypandy]

I am just after a bit of advice really.

I had surgery to de-tether my spinal cord exactly 4 years ago this month and for over 1 year I have had the worst nerve pain in my bladder ever. So bad that I take EXTRA Gabapentin, Temezepam, Oramorph, MST and Diazepam, just so that I can get some sleep.

I saw a GP today who told me that it was okay to take all the extra medication and carry on with that. If the pain continues then she will refer me to the pain clinic, but I should really go and see my usual GP. I saw her because I was embarrassed to talk to my male GP about where the pain radiates to

I am at the end of my tether with the pain.

Does anyone have any advice please ?

[treborc]

I know what your going through, my pain was so bad the hospital implanted a morphine pump under the skin which delivers a dose ever three hours. Sadly even that did not help much, it has taken me years to learn how to live with it.

I had an accident which smashed my spine to bits and moved my bladder up into my body cavity.

The problem with medication your body gets accustomed to the drugs, and you need to take more and more until your totally addicted.

For me the pain clinic did help although when I first went I thought they were talking rubbish.

I had the nerve cut so my bladder does not function any more drastic did the pain stop nope.

But you realy do need to talk to your own GP, my GP is female and although it was difficult at first I got use to it.

[andypandy]

Thanks treborc, it is more annoying as my bladder doesn't work anyway like yours and yet its giving me hell.

thanks for the support

[Lighttouch]

Hi AP, I've had a tethered spinal cord in my neck for 20 odd years. It's a side affect, in my case, of having had major neurourgery in my neck spinal cord and back of my head. There's too much scar tissue around it so they can't operate to release it.

I only visited the pain clinic once and they asked me why I was there as I'd managed my pain for years without drugs.Like Mr T - morphine is the only drug that could hit my pain but there are too many side affects so I don't take any pain killers I just live with it 24/7.

Bladder - when I used to go out with Gwen she was a wheelchair user with MS she used to self- catheterize until she lost the feeling in her hands. Then she opted for a bag where the tube came out of her stomach area from her bladder - it was very effective. Sadly she passed away in her mid forties the MS closed her down altogether but she had a happy outlook despite her problems - a real inspiration.

Let us know if there are any tips to pass on.

[andypandy]

Thanks for the reply AP. Yes Gwen would have had a supra-pubic catheter, thats what I have. Because it took so long for me to be diagnosed, over 4 years it was then too late to fix the nerves leading to my bladder.

I bit the bullet on Thursday and went to see my usual GP. He is really good actually. He has doubled my Gabapentin so I am now taking 3600mgs a day, referred me for an examination by a female GP and referring me for a pelvic scan. He seems to think it is nerve pain but is just ruling out other things first.

I was SO SO happy when I came out and wish I had seeing him 3 years ago when I first had the pain and all because I was too embarrassed !

Thanks LT

[TedHutchinson]

T He seems to think it is nerve pain

It may be worth your while discussing with your doctor the possibility of using a timed release melatonin (it is available on prescription but probably cheaper if you import from the USA discount providers)
Melatonin modulates neuroinflammation and oxidative stress This paper explains how melatonin is neuroprotective and as it's anti inflammatory it helps to stop neuroinflammation.

This paper explains how it reverses bladder damage

I find it useful to use melatonin as it increases bladder volume and decreases urinary flow so allowing me to go through the night without having to pee.

[treborc]

Dear god now he wants you to deal with the USA Ted mate your a plonker

[andypandy]

It may be worth your while discussing with your doctor the possibility of using a timed release melatonin (it is available on prescription but probably cheaper if you import from the USA discount providers)
Melatonin modulates neuroinflammation and oxidative stress This paper explains how melatonin is neuroprotective and as it's anti inflammatory it helps to stop neuroinflammation.

This paper explains how it reverses bladder damage

I find it useful to use melatonin as it increases bladder volume and decreases urinary flow so allowing me to go through the night without having to pee.

Thanks all the same Ted, but I will deal with my GP and I have a catheter so I can go forever without having to pee !!!

[TedHutchinson]

Thanks all the same Ted, but I will deal with my GP

What do you find difficult to understand about the words "It may be worth your while discussing with your doctor "

and I have a catheter so I can go forever without having to pee !!!

Indeed but other people may want to read this post and may be interested to understand how to get through the night without peeing.

[TedHutchinson]

Dear god now he wants you to deal with the USA Ted mate your a plonker

No the plonker is the person who pays £7.40 for a month's prescription when you can buy 8 months for £12.16 for Source Naturals, Melatonin, Timed Release, 3mg $19.58 (£12.16)

I appreciate that some here will probably not be paying for their prescriptions so I did point out Melatonin is available on prescription which is why I started with the words. It may be worth your while discussing with your doctor the possibility of using a timed release melatonin (it is available on prescription

If you know a cheaper source that's fine, I'd be pleased if you could tell me.

. A daily intake of melatonin before bed time might achieve the same effect as fasting e.g. an increase of body melatonin levels, which will protect the individual from the ravages of old age. That includes Parkinson's disease and Alzheimer's disease.
There is a large group of people taking melatonin daily who believe that melatonin is the "fountain of youth".