Urine Retention in PSP

[Millidog]

Hi, My husband drinks plenty of fluids and is hydrated but has inconsistent but increasing episodes of urine retention. He may go every few hours one day but the next is unable to go for over 12 hours which I know is concerning. Has anyone else had experience of this and any advice to give. Thank you

[Leosta]

Hi Millidog, yes we had experience with exactly the same thing. Frequency with urinating varied greatly. Some days hubby wouldn't produce anything, then come late evening he'd produce so much it leaked from his protection pants and saturated the bed. He was bed-bound. I can't give you any advice other than use waterproof protection sheets under his body to try and prevent a necessary change of bed linen. I have read that it's caused by that part of the brain temporarily failing to communicate with the bladder. Not an easy complication to manage and I feel for you. 💟

[Millidog in reply to Leosta]

Thanks Leosta, useful info. My husband isn't yet bed bound yet and doesn't seem to have night time accidents so far 🤞 its just he can go from mid afternoon to mid day next day trying and not being able to go. Fortunately after 18 hrs he's been this morning. Just not sure how long to leave it and what we can do if it reaches 24hrs ??

[Leosta in reply to Millidog]

Ah, well your situation sounds slightly different. 18 hours does seem a long time and I suppose it could lead to infection. Does his GP know? Maybe worth him checking your husband hasn't got a UTI, do hope not. And the fact that he's trying to pee but can't will be worrying for him and, of course, you, hence your post. My husband seemed oblivious to the fact he hadn't peed. As I said I wasn't too concerned as I knew this could be a condition of PSP and that he would go in his own time.Sorry I can't give you more advice. But do tell his GP if you haven't already.

PSP is a nightmare for all concerned.

Good luck. Will be thinking about you. 💟

[Sun-flowerwearer]

Hi

So my husband found it harder and harder to empty his bladder. He would go to the toilet endlessly and nothing would come out. …This went on for months but the more it inconvenienced me as I had to get him up and down all the time to go to the loo the more aware I became of the issue. I told GP and she sent the district nurse round to scan his bladder.

He was retaining urine and had a full bladder just unable to urinate. They inserted a catheter. The urologists found an enlarged prostate blocking the urine flow and this is fairly common even for men without PSP.

He has had a fowley catheter now since October last year changed every 10 weeks.

[Bergenser]

It sounds familiar but there are so many potential causes. My husband has gone through numerous tests to rule out prostate issues and cancer, and I keep test strips in the house to be able to check quickly for UTIs. Sometimes it's just a matter of relaxing; we whistle - the first bars of "Also sprach Zarathustra" (2001: A Space Odyssey) usually does the trick (keeping a tap running might also do it).

Other times it's related to constipation and when he finally opens his bowels the pee comes out as well, usually outside the bowl 😔.

He was given Tamsulosin to reduce the need to get up multiple times in the night to pee - it seems quite effective to relax the bladder, both to hold more and to let go when needed.

I think what others have said is correct; that the brain doesn't manage to start and stop urination the way it normally does.

Catheters sounds like a bit of a last resort but also really helpful when nothing else works - we've experimented briefly with convene (external catheter/condom catheter) and this can give the confidence to just go when he needs to go.

It's tricky, I hope you and your husband find a solution. 🌻🫣

[LFG3]

Hello,

All the above comments are correct. First the prostate has to be checked to be sure there's no obstruction to the urinary flow. After that our urologist did a test called a urodynamic study. It showed the cause of the urinary problems was from an impaired signal from the brain to the bladder. They called this Neurogenic bladder. They encouraged us to do quick (in/out) catheters 4-6x a day. As a sole caregiver I was unable to take on this duty and he was unable to do it himself. So we opted for the indwelling Foley catheter. It comes with an increased risk of infections, but it made our life so much easier. No more up and down trips to the bathroom. That means we could sleep all night undisturbed, both of us. Hope this helps you. ❤️. BTW...urinary retention should be addressed because urine that is held too long backs up into the kidneys and causes kidney damage. That's what our urologist told us.

[Licquoricelover]

My husband has urinary retention. After several UTIs ending in hospital stays the Urologist suggested a long term catheter which he currently has. It’s urethral and does not omit UTIs completely but at least you know the urine is being released. He is waiting for a Suprapubic catheter to be fitted which will be more comfortable.

Has your husband had his bladder scanned to check how much he is retaining or whether he has an enlarged prostate which might be causing problems. Worth investigating.

I tried doing intermittent catheterisation on my husband for about 5 months but found it very exhausting so the long term catheter has made life easier and avoided bedding accidents. Best of luck and wish him better.

[45purple]

Hi Millidog I used to work in a care home and we used a sheath then urine bag attached to it so if your husband had an accident it would just drain into the bag. Saves your husband getting wet and dignity of not wetting the bed, also saves you having lots of washing. Speak to your doctor about going down that route. Good luck 💜

[Millidog]

Hi All thanks for the advise. My husband is still somewhat mobile with walker and assistance and can stand at loo on own, doesn't have night accidents so incontinence apart for a few not got there in time issues, so it's more the concern of long periods without going to loo. I am concerned that any form of catheter or sheath is possibly to extreme a measure at this stage and I doubt he would agree xx

[Bergenser in reply to Millidog]

One more thought/observation - My Mum had MS, where urine retention is a common problem - she was advised to try a different position i.e. sitting facing the back of the toilet which opens/tilts the pelvis differently and makes it easier to empty the bladder completely. I have no idea whether it works for men but it costs nothing to try 🤞

[Millidog in reply to Bergenser]

I'd love to try that but he won't sit down to pee🤣

[Sun-flowerwearer in reply to Millidog]

yes catheters are a whole other thing

We had to have one as husband couldn’t pee and they were so worried about kidney infection and he was getting me up sometimes very half hour through the night to pee and then couldn’t. All very stressful

The initial catheter insertion by the district nurse went wrong as she didn’t anticipate the large prostate. It ended up an 999 ambulance into urology and 3 nights in hospital. Then discharged home and another emergency admission with a uti 10 days later and in hospital 9 more nights. Lost his ability to walk at that hospital stay !

We have to go into hospital for catheter changes as very complicated insertion as his urethra was damaged by initial insertion. That means that I can’t get help from district nurses on the community so a lot of hassle. We have to have ambulance transport arranged each time.

I’m 100 percent responsible for of catheter bag changes, emptying, positioning and problem solving. It can be very stressful. I have anti biotics at home in just in case bag for utis as don’t want to go into hospital if we can help it.

We had it changed again last week. I have discussed superpubic with urologists but it sounds even more stressful to change and manage.

But then nothing is easy with PSP. Hope you find a solution Millidog x

[Hidden]

My husband had a catheter fitted after a series of scans of his bladder revealed that he was consistently retaining 800+ ml of urine in his bladder, even though he was going to the toilet on a regular basis, although sometimes he didn’t make it in time and had accidents. We were told that the urine retention was part of his PSP. He had a catheter fitted which has been ok. He is under the Urology Dept of our local hospital so has checks every 6 months, including blood tests to detect any issues with his prostate. We were also told that urine retention could cause serious issues for him so really we had no option but to have the catheter fitted as it was the only way we could be sure that his bladder was not resting urine.

[Rose1sunflower]

Hello Millidog

A couple of years ago, my husband mentioned to the Specialist Nurse who was visiting that he had trouble going to the loo. She happened to have a measuring device in the car at the time and this proved that he had urine retention. (At the time he was mobile, using a walker).

District nurses fitted him with a catheter.

She also referred him to the Urology Dept to check things out. He was found to have Prostate Cancer. He is being treated with hormone therapy. He is still using a catheter and isnt so mobile, so for me it is easier to manage.

I’m not saying that Prostate cancer is a cause but as others have said it is good to get everything checked out.

(At the same time the cat was weeing on the bed so between them I was forever up at the laundrette washing duvets etc! I now cover the bed with a foil sheet to keep the cat off!)

Good luck

[Millidog]

Thanks again all. I'll speak to the gp, he's good although his psp knowledge is low. When my husband does go...he goes....and goes...and goes and it appears and he says he feels his bladder is empty...its just the length of time which can be good some days and then 12-16hrs on other days between peeing that concerns me. Don't you just love PSP xxx

[bichonbear1]

Hi Millidog, my mum has had urinary and UTI issues for almost 2 years or so now. Although female I can share our experiences. Mum was fit with a catheter as she was not passing urine and was on a catheter for about a year. We tried on and off without it as the catheter was causing problems in its own right. Mum has been off the catheter for about 9 months now after we were advised to see how it went without one during a stint at the hospice . Her bladder started to work on its own again, have no idea how. About 6 months ago mum was retaining again and after a rush to hospital as she was experiencing pain it was discovered a kidney stone was blocking her kidney exit. That in itself is another story. My mum can’t express/articulate pain or pin point it so we struggled to realise that. We have learnt over time how bad it is for urine to build up as it causes kidney complications. Hope you get to the bottom of things.

[Runner333]

Thank you for starting this post. My husband has been diagnosed with psp and he had several utis and had night time incontinence. We were referred to a urologist and he was retaining urine. He would try to go but nothing came out until nighttime. I tried double pads, wraps, changing depends in the middle of the night but nothing was able to hold the amount of nighttime urine. Urologist suggested intermittent catheters 4 to 6 times a day. I was not able to get the catheter to the bladder and felt like a failure. It was so stressful and we both dreaded it every time I tried. So the urologist suggested the suprapubic catheter. We met with the urologist 3 times to talk about the procedure and if it was the right thing for my husband. He had the procedure and I am very pleased with our decision. We had to get use to changing/draining the bags, nighttime bags, and plugs. It is easy for me to monitor his urine output. I was keeping a bladder diary when he first started having trouble emptying his bladder but now I don’t need to. He is sleeping through the night with the larger nighttime bag. Thank you for sharing all your experiences. It is so helpful to learn from you all.

[Millidog]

Hi Again All, thanks for all your continuing advice. I've had a response from our neuro nurse and she understands my husband is generally continent most of the time and is overnight, and that the main issue is length of time when unable to go to loo 12 + hours, she agrees a catheter is extreme at this stage and could impact on bladder control at a stage too soon. She suggests we speak to gp about what we can do to resolve to prevent a more serious issue. So I'll keep you posted when I have some news Thank you