Bladder Issues With FND

[LEEJUNFAN]

Hi everyone,

Does anyone have any problems with retaining fluid in their bladder?

I'm holding 130ml of water, which shouldn't obviously be there and I have one kidney larger than the other with scarring on one kidney also.

It's quite painful holding water that doesn't empty fully and I see the Urologist on Monday to see what they will do.

I'm wandering if it's FND related, as I've had FND for 13 years, but my water retaining has started 3 months ago and the pain is sometimes worse than other times.

Thank you.

Kim 👍👍🌈

[lorettapalmer]

Hi Kim

I have been retaining urine for years now due to the lack of feeling a have. I’ve had funcational gait disorder for over 10 years now and had bladder problems for about 8 years.

I’ve had scans and they found that I always had a little bit of urine left even through I thought I had emptied my bladder.

I’ve had 2 lots of kidney stones and (touch wood) have learnt that I need to visit the toilet every Couple of hours and sit there and try and do something even if it’s only a little bit. I find that doing this I have kept the kidney stones at bay.

I’m sorry to say that this is all part of my FND and I’ve had to learn to live with it. I do have regular bladder infections but have learnt at the first sign of any infection to drink more water ( and I mean like 2/3 pints in an hour) and this does sometimes help to flush the kidneys through.

As I said I have no feeling from my chin down and so I don’t feel going to the toilet or whether I need to go. Could go all day without going to the toilet but this only causes more Trouble.

Hope this helps a bit? And if you need to chat please message me, and lastly good luck for Monday

Kind regards

Loretta x

[eviedotty in reply to lorettapalmer]

have you tried...this is a recipe from my old gran and has always helped me.....make up diluting juice of choice and add a teaspoon/half teaspoon of baking soda from the kitchen cupboard and it sorts out water problems before they become a bigger issue....I did talk to my own doctor about this who was really shocked at the recipe because apparently the powders prescribed/bought over the counter are based on baking soda...worth a go

[maeveblue]

Hi there,Yes I do have issues with my bladder as a result of FND. I have no sensation of my bladder filling and difficulty voiding and as a result have to self catheterise. This comes with infections also. I hope that the Urologist has some answers for you.

[Mic67]

Hi yes I've recently had all the Urodynamics, scans etc and ended up being told that I have poor bladder contraction which causes retention & poor stream. This means I am constantly going to the toilet even throughout the night. Luckily I dont have infections. They've said self catheterisation is the only treatment but I am not going to do this unless I start getting infections.I can't accept this is just down to malfunctioning of my nervous system so am not ready to accept this is FND. Am seeing my neurologist in Oct so will see what he says.

Good luck with your appointment!

[eviedotty in reply to Mic67]

Have you tried the pelvic floor exercises and if so does it make a difference

[Mic67 in reply to eviedotty]

I think these exercises are good if the issue is leaking/incontinence. In my case, my pelvic floor muscles are fine, but the nerves to make the bladder itself contract are not working/damaged. Apparently the only cure is the catheter but I am resisting that.

[Riley-Roo]

I also have bladder issues due to FND. I don't feel the need to go to the bathroom and have a difficult time emptying my bladder. My urologist sent me to Pelvic Floor Physical Therapy where I learned that the nerves are not longer working with the muscles, My muscles in the pelvic floor stay tight all the time, they spasm like my back and leg muscles. In therapy I learned how to relax those muscles even though I don't have any feeling. They had to do manual therapy at first to get those muscles to relax and let me know when they are relaxing. It is a lot of work but I think the effort was worth it.

[Jilly61]

Initially when I was first paralysed in 2019 I was incontinent, I was in hospital and they put a cathetar in. They said I had a SCI post spinal cord stimulater insertion. I was in rehab for 3.5 months and learnt to walk again with a walker. But they sent me to the spinal unit to finish my rehab . There my functional symptoms really ramped up, they called in a neurologist, who I was fortunate was in the same hospital and a leader in FND, who diagnosed me. When I had my cathetar out I was having alot of difficulty and saw a urologist to have the test to see if I was retaining urine. I was. I also had a bladder that was too tight. I have botox every 6 months and I self cathetarise.I would rather do that and drink lots of water. Getting a uti puts me in hospital.

Doing self cathtars is not as bad as it sounds.