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 :o

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.:o:o

[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 (http://www.ncbi.nlm.nih.gov/pubmed/21062351) 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 (http://www.ncbi.nlm.nih.gov/pubmed/20939818)

I find it useful to use melatonin as it increases bladder volume and decreases urinary flow (http://www.ncbi.nlm.nih.gov/pubmed/20488476) 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 (http://www.ncbi.nlm.nih.gov/pubmed/21062351) 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 (http://www.ncbi.nlm.nih.gov/pubmed/20939818)

I find it useful to use melatonin as it increases bladder volume and decreases urinary flow (http://www.ncbi.nlm.nih.gov/pubmed/20488476) 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 plonkerNo 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". (http://www.jpp.krakow.pl/journal/archive/02_11/pdf/13_02_11_article.pdf)

[TedHutchinson]

Why would I want to try Melatonin when I don't know what is causing the pain ? what if its cancer for example and you are suggesting I try Melatonin. I suggested you discussed with your doctor the research showing melatonin helps repair nerve damage in the bladder.
Your doctor "seems to think it is nerve pain" so reminding her/him of the research showing melatonin is both neuroprotective (protects nerves) and is able to reduce neuroinflammation (probably source of nerve pain) may be helpful.

I did not suggest you took melatonin without discussing the matter first with your doctor.


I know you, I know you are helping other people, but this is MY thread and my bladder problem and you DO NOT know enough about ME or my bladder to suggest some very strange drugs for pelvic pain Melatonin is NOT a strange drug. It is a NATURAL SUBSTANCE your body naturally makes itself. It's made not only by the pineal gland but also in your digestive system. The problem with it is that our ability to make melatonin (like vitamin D) declines as we age therefore the older we get the more effort we have to make to ensure we get bright light during the day and have dark bedrooms at night and use subdued light during the evening. Only if you cannot make sufficient melatonin naturally will you need to supplement but it's a very safe substance.


but when it comes to ME I reckon I am more qualified than you I've not suggest anything other than you discuss with your doctor the possible benefits that may come from using melatonin to repair damage to nerves in your bladder because your doctor seems to think it is nerve pain.
If you don't want to do that then that's your choice.
But hopefully other readers will see how are overreacting to a very sensible suggestion.

By the way you mention cancer and melatonin and there is lots of evidence showing Melatonin has anti cancer actions (http://tinyurl.com/3mbbwfo) so improving natural melatonin secretion or correcting a shortage of melatonin would actually be useful to cancer patients. Though as I've already pointed out several times I did suggest you discussed the use of melatonin with your doctor to get it on prescription.

[andypandy]

I don't think I will ask my doctor about a prescription of melatonin but many thanks for your comments. It hasn't helped me but like you say perhaps it will help others. Lets bring this discussion to an end now. In future I will just not post in health.

[administrator]

This thread has been closed down by DLF’s moderators as it is disrupting normal use of the forum.