With spinal cord injuries, my bladder and bowel don't work - my bladder is neuropathic, my bowel, neurogenic. I've lived with this since aged 18 and I'm now 49.
Lately, as in the last few months, my bladder problems have got worse, for example in the past week there has't been a day when I've been wet more than once a day - even though I regularly self-catheterise. It has got so bad I don't even change because if I did I wouldn't have any clothes left and the washing machine would be on all day.
I'm already totally isolated but this aspect makes me feel so unhappy. It isn't infection as I have no other symptoms. I think this is just deterioration. Does anyone know if this is the likely cause?
Written by
MSTKing
To view profiles and participate in discussions please or .
15 Replies
•
Hi there, I fully understand what you are saying as I have similar issues , you can get underwear with pads sewed in or just pads do you take anything like pregabalin , gabberpentine , for your Neuro condition.
Hi, I really would suggest you discuss this recent worsening of symptoms with your GP, as they are in the best position to advise knowing your medical history.
At the same time ask their opinion about pain meds. Pregabalin is in the same family of meds as Gabapentin, but can be taken at a much lower dose than Gabapentin, whilst giving the same amount of pain relief. Some people prefer Gabapentin; others Pregabalin. I know personally I fall into the latter category for my neuropathic pain. I hope you get some relief from these worsening problems soon.
I have cerebral palsy and have a neurogenic bladder. Some days are worse than others and my catheter doesn’t help. Are you on bladder meds as they can help but not completely mirobegron is a newer one and I take it with buscopan and vesicare . You may need a urology review.
Maybe you should go back to your GP to discuss this. A possibility could be to have a catheter fitted that can be emptied just in the toilet at regular intervals as if you go for a wee. My Dad had one like that. And occasionally they can take it out to see if whatever made it worse has resolved itself. Also of course what Beehole said is invaluable as in wearing pads so you don’t walk around wet risking an infection and no doubt smelling a tad unfresh.
I go through a pack of Tena maxi nighttime a day so gets very expensive, but can't use the pads from the services. I used to have an indwelling catheter, but was taught how to use an intermittent catheter, because an indwelling one caused far too many infections. I get no signal that I need to use the toilet - all that was damaged with my spinal cord injuries.
I know that a permanent catheter can cause more infections. It’s a difficult balance. But walking around wet all the time equally can cause infections as it causes coldness etc. I do feel you are in a very difficult place but on the whole your body needs a rest from this wet stress so therefore a temporary indwelling catheter might be better. The stress of never knowing whether you are wet or not is just soul destroying. Plus if you go at set times to the toilet your bladder might get used to emptying itself then.
You should be able to get at least an allowance towards the pads you can use? Or alternatively buy some you can use and pad it out with the ones from the service?
Because I have no feeling in the area, the size of pads from the service cause rub marks - which could develop into sores. There's no chance of my bladder working normally unfortunately. I just get so despondent about the whole bladder/bowels issue even though my original injury was some 30 years ago. I do wish there was some financial help, at the moment my mum is helping but she won't always be around. One pack costs around £2.40 (sometimes less if on offer) so you can do the maths if I go through a pack a day...
It must be very frustrating, I do sympathise. If the free pads cause rub marks is there any way you can protect that area with something soft. So that way you can use the free pads but don’t get the rub skin marks. Still think that occasional relief by way of permanent catheter would help you by training your brain to release the bladder muscles/nerves at certain times. After all all nerve signal in the form of pain etc do come from the brain. Even if it does not work you do need temporary relief from all this horror from time to time.
The pads that you get are free on the NHS , I would look into it .
I would think long and hard about a permanent catheter. I’m in hospital every four to six weeks with urosepsis and antibiotics resistance and you can still bypass. You should be able to get the pads free. Speak to your gp or urologist or urology Nurse.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Kidney stones and stents
Pain 
Complex regional pain syndrome & restless legs
catchthepigeon68 
Back pain morning to night for 1yearandhalf
