New Urinary incontinence : This week I seem to have... - PMRGCAuk

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New Urinary incontinence

HappyDiamonds profile image
68 Replies

This week I seem to have developed a real urgency and have started to empty my bladder as soon as I realise I need to go. Have had a slight urgency for a couple of years but more just a slight leak occasionally. Im also passing usual amounts of urine far more often including during the night and sometimes only a minute or two apart. Is this Steroid related, an infection without pain (although I do feel a little off). Or connected to my piriformis problem, now taking ibuprofen?

Any helpful advice suggestions please?

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HappyDiamonds
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68 Replies
SheffieldJane profile image
SheffieldJane

There are a number of issues that may cause these symptoms. Anything we say would be a guess really. Obviously you need to have some medical investigations to ensure that there isn’t an infection present. It could be steroid induced diabetes or as you say, something physical connected to your piriformis syndrome, or even a side effect of your medication - the body trying to deal with water retention. I think we are prone to urinary symptoms on and off, I know I am. Be careful with Ibuprofen, it is not recommended with Prednisalone. It is very harsh on the stomach and can even cause internal bleeding. Let us know if your doctors diagnose the problem. Mine tend to go down the infection route then put it down to age. I seem to have to push for investigations these days.

HappyDiamonds profile image
HappyDiamonds in reply toSheffieldJane

Thank you, will get urine tested tomorrow morning and I have a blood test booked next week so will ask for diabetes to be included. I was pre diabetic last time, but the carbs have started to creep back in. That stops tomorrow.

MrsNails profile image
MrsNails

Hi HD - Firstly you need to get a sample down to the Surgery ASAP for them to send off for Culture & sometimes the Nurse will prescribe a 3xday Course of Antibiotics to cover you until the result is in, especially if you ‘need’ to be going urgently & it’s the weekend.

Drink plenty & go to the loo before you need to (if you get my meaning) so it won’t be so distressing!

Bladders, Kidneys & UTI’s seem to go hand in hand with PMR/Steroids???

MrsN x

HappyDiamonds profile image
HappyDiamonds in reply toMrsNails

Thank you, I hadn't realised it was common with steroids but have a tendency to blame for everything. Will get to the Surgery in the morning.

MrsNails profile image
MrsNails in reply toHappyDiamonds

I have this infection now & l wouldn’t have known except for the Beetroot Incident! 🩸I have Dipsticks at home so after the Pink Wee l thought l’d test anyway & now on my 2nd lot of Antibiotics but l feel fine & have no symptoms!

I’m beginning to think there’s some connection……

They may give you something for over the weekend just incase…..

Keep us in the loop!

MrsN

HappyDiamonds profile image
HappyDiamonds in reply toMrsNails

Will do, and hope you are ok, you just don't need anything else I'm sure.

PMRpro profile image
PMRproAmbassador

Typical signs of an asymptomatic UTI I'd say - recognise them all! Including the needing to go every few minutes! Need to see the doctor and at least get a urine dip test and preferably a urine culture. You can get dipstix from the chemist and check for yourself as an indication - you are looking for raised nitrites and white cells/leucocytes.

HappyDiamonds profile image
HappyDiamonds in reply toPMRpro

Thank you. Normally when I come back from walking my dog Usain Bolt wouldn't catch me when I'm running to the loo, but at the moment speed is impossible plus the fact its too late anyway I'm afraid.

SheffieldJane profile image
SheffieldJane in reply toHappyDiamonds

Funny! Your dog, not your symptoms. I have found Mannose Waterfall over the counter, on-line remedy as helpful as anything to be honest. If it is a urine infection.

HappyDiamonds profile image
HappyDiamonds in reply toSheffieldJane

Brilliant, I have just put in an order on you know where for more masks, dipstix and will add Mannose stuff as well. Thanks

SheffieldJane profile image
SheffieldJane in reply toHappyDiamonds

I hope it works. It changes the chemical composition of your pee apparently. It certainly seems to ease the discomfort. I am also spending a fortune on all the peripheral symptoms. ☹️

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

They think it stops the bugs hiding in the cells and they stick to the sugar and are flushed out in the urine

webmd.com/vitamins-and-supp...

I use it in an emergency - but it is horrendously expensive here!

HappyDiamonds profile image
HappyDiamonds in reply toPMRpro

I ordered powder to mix with water as I have trouble swallowing tablets. It was 9.99 on offer and will be delivered tomorrow. Will see how it goes and order more later to keep on hand.

PMRpro profile image
PMRproAmbassador in reply toHappyDiamonds

If only!!!! All supplements except calcium and magnesium cost a fortune here!!!

HappyDiamonds profile image
HappyDiamonds in reply toSheffieldJane

Tell me about it, if you could see my recent orders you would think I was a hypochondriac......

dylanesque profile image
dylanesque in reply toSheffieldJane

Agree 100% re. Mannose Waterfall has helped me more than a 'variety' (can't keep track!) of anti-biotic pharmaceuticals. Indeed, on stopping Mannose in order to follow GP's prescriptions, I have three times suffered a huge increase in 'urgency'. Back to Mannose only and the urgency has (again) receded. Frankly, I am thoroughly disgusted by the current generalist (GP) fallback to "age" for every symptom they have clearly failed to study. Good luck with the Mannose.

Constance13 profile image
Constance13 in reply toHappyDiamonds

Not a laughing matter I know (I know the rush to the toilet myself) but the Usain Bolt made me laugh.😂

Hope you sort it out soon. 🍀🍀

suenewberry profile image
suenewberry in reply toHappyDiamonds

I have just read your post and you really cheered me up with your comments regarding returning home after dog walking. I have had a gradual changeover to tenna lady and did not even connect it to steroids which I have been off since 2018. How lovely it is for us all to be so direct in our sharing. Wonderful site.

HappyDiamonds profile image
HappyDiamonds in reply toPMRpro

The Nurse from Surgery has just phoned to say no infection found but there was a lot of blood in my sample. Last blood test showed elevated urea, don't know whether that is significant. I have had small amount of blood in previous samples some time ago which they kept checking every 2 weeks and it eventually disappeared. Little worried now and wondering whether the pain in groin etc I'm experiencing with my buttock problem is related. From reading everyones posts though its obvious steroids are involved, but would they cause blood in urine as well? Appreciate your thoughts please Pro.

PMRpro profile image
PMRproAmbassador in reply toHappyDiamonds

Sounds as if you have unhappy kidneys - so they need to check. Have you been eating a lot of protein? Could you have been dehydrated when the blood sample was taken? How was the creatinine and eGFR, did she say? Are you on a PPI? (Omeprazole or the like)

HappyDiamonds profile image
HappyDiamonds in reply toPMRpro

GP just phoned, he's not worried about urea 8.7. I wasn't dehydrated or eating extra protein, don't have results of the other items unfortunately. I take Lanzoprazole 15mg each morning. He decided to put me up some antibiotics for 5 days anyway with instructions to contact him again on Monday if no improvement and to take in another sample in 2 weeks if antibiotics do help. The only other different thing was I was taking 50mg of Azathioprine daily when both this and the muscle problem started.

PMRpro profile image
PMRproAmbassador in reply toHappyDiamonds

Maybe all the little things together have added up

As long as they keep an eye out ...

Note I have Stills Disease. I have Interstitial Cystitis which I developed as a result. I do t want to add too many things to consider but if all tests negative it’s a possibility to mention to your medical team. Usain Bolt is slow compared to my runs to the loo 🏃‍♀️

in reply to

Ps, I often wet myself.Can’t believe I said it!

🌊

HappyDiamonds profile image
HappyDiamonds in reply to

Its kind of taboo isn't it, just glad I can mention it here where no-one can see my red face and are kind enough to help and reassure.

MrsNails profile image
MrsNails in reply toHappyDiamonds

Tenna Lady 😉

HappyDiamonds profile image
HappyDiamonds in reply toMrsNails

Yep, ordered them as well, added to my Ocado order tomorrow and now in "my favourites" oh dear!!!!!!

PMRpro profile image
PMRproAmbassador in reply toMrsNails

Love predictive text!!!! Not! Tennis ...

MrsNails profile image
MrsNails in reply toPMRpro

That’s what l got first but spotted it & corrected it! Anyone for Tennis? 🎾

in reply toMrsNails

Jumping about is out of the question with leaky bladders 🎾

in reply toPMRpro

ACE

Hollybee21 profile image
Hollybee21 in reply toMrsNails

Have you tried Aldi’s panty liners, they come in a variety of lengths, do not move and I find them excellent value for money.

MrsNails profile image
MrsNails in reply toHollybee21

I’m a Always Ultra Girl 😉

Moness profile image
Moness in reply toMrsNails

It’s a relief to know I’m not the only one but what a bind it all is. I’ve given up drinking coffee before I go anywhere as it does seem to help. My GP gave me pills for the problem but I just don’t want to add another lot of medication if I can possibly avoid it. The lack of toilet facilities is bad too.

in reply toMoness

Yes I’ve noticed since the pandemic there are less loos and less shops open that used to have them, I try and reduce my fluids when I’m going out but it’s still a worry and when the bladder is full it’s so painful too.

HappyDiamonds profile image
HappyDiamonds

Thank you for replying, we ladies do have a tendency to think uti's are a female problem. Im sorry you experienced sleep apnea, that must be frightening. As for weight gain I managed to maintain for nearly a year and then all of a sudden along came another stone and a bit and I swear half of it is on my face!

Melodyvine profile image
Melodyvine

I completely identify with the getting home from walking the dog, home from shopping in fact home from anywhere issue…..I was very relieved to discover that it’s a recognised condition….latchkey incontinence! I also identify with getting up more in the night and sometimes having to go very shortly after I’ve just been.

However, this hasn’t come on suddenly as you describe, I’m no longer on steroids and am 73 as all have suggested, best to check for infection.

Long term advice, the same as Mrs Nails, go before you need to just like when we were children or had young children before leaving the house we always asked….”have you been to the toilet?”

PMRpro profile image
PMRproAmbassador in reply toMelodyvine

Same here - but could I get my children to oblige when I was taking them out. I suppose we had the encouragement of there being NO chance of a loo once we were on the bus but they knew the car could stop anywhere! It was one of the brilliant things about our camper van - always a loo to hand!

HappyDiamonds profile image
HappyDiamonds in reply toMelodyvine

Love "Latchkey incontinence" will use that in future 😀

Melodyvine profile image
Melodyvine in reply toHappyDiamonds

It is a real condition if you Google it! For those who have breastfed I liken it to a sort of let-down reflex.

HappyDiamonds profile image
HappyDiamonds in reply toMelodyvine

So it is, and I know that feeling sat in the car when you get home but knowing whats going to happen when you stand up and crossing legs whilst you put the key in the door. Describes it all perfectly.

Frewen1 profile image
Frewen1

Hi everyone, joining late to this discussion…I’m the one whose first post, nearly a year ago, was about a sudden occurrence of flooding ( no other way to put it) … which is still happening. This, as I explained originally, is a completely separate process from “ needing to pee” - it appears to be happening quite independently, like a water tank tap being turned on. It started a couple of weeks after I began steroids ( then 60mg) a year ago. Perfectly fine at night ( body horizontal ) but at any time during upright hours I can just flood, quite separately from just going to the loo ( which I do as well). Do pelvic floor exercises. Am finally on a list for investigation but as you see, nothing much has happened in a year. I am boosting Tena’s profits, and won’t be told it’s age. It isn’t. Such a direct and sudden connection with the beginning of Pred. Along with everything else, it’s a bit debilitating, and undermining, but, hey ho.

Paperroses profile image
Paperroses in reply toFrewen1

Yes, had the flooding experience when i first started on steroids. Now i get up anywhere from 2 to 6 times a night, not flooding but urgently have to go.

Uglow profile image
Uglow

I find in morning I get urge to wee more often tends to die down as day goes on. I assumed it was steroid induced diabetes. I have ore diabetes since steroids. X

When I first started with PMR and before diagnosis, I lost control of my bladder, In a way it's more upsetting than the disease. Not a UTI, three years on just like you when needing to go it has to be right away. Walking the dogs they think I'm marking my territory! One even does his back legs as if he's been himself. Mentioned it to doc as I now have a prolapse, she said the ring might help with bladder control but f not there are pills that could help so we shall see once the prolapse has been sorted. When taking pred at 2am found I needed to get up three or four times a night, now I'm down to 3, take the steriods at 7.30 am, I no longer get up at night so pred must have a diaretic effect. So sorry for you it dominates your life doesn't it.

HappyDiamonds profile image
HappyDiamonds in reply to

Dogs know all our little secrets, they spend hours watching us. Mine certainly knows which room I'm heading for first when we get home and he knows to keep out of the way as I run to it discarding my bag, keys etc on the hallway floor as I go.

Hope things settle for you once the prolapse problem is solved.

in reply toHappyDiamonds

That sounds so much like me, will let you know if anything positive comes from my doctor with her pills. My friends on them she said without them its wooosh!!

in reply toHappyDiamonds

At least you get home! I quite often end up behind a bush. I’m probably worse than the dog 😲

in reply to

Luckily it’s just your bladder then 😆

Rymer profile image
Rymer

It's been great hearing all your 'wee' stories. It is so refreshing and reassuring to see such honesty ..... and yes I also admit to having the 'wee' accident and need to go at least 3 times everynight which doesn't leave a lot of time for sleep. Sometimes near dawn I think I will wait it out and then find that I can't actually do that successfully when I do give in. I should know better but sleep and comfort seems such a precious thing sometimes I just want to hold onto it a little longer (to my detriment usually). Sooooo pleased I found this website - it's like finding a lot of old friends that you feel comfortable with without even having an introduction.

Noosat profile image
Noosat

I have the same problem. never pass an available loo. I thought that the PMR had probably weakened my internal muscles

HappyDiamonds profile image
HappyDiamonds

Thanks everyone for the replies. I feel kind of guilty saying this but its good to know Im not alone. Honestly didn't realise what I would be starting when I posted but if my question has helped just one other person then Im glad I asked. Girl Power!

My urine sample was tested this morning and no infection was found, but there was a large amount of blood in it (not beetroot 😂). Will let you know what happens next.

PMRpro profile image
PMRproAmbassador in reply toHappyDiamonds

The DVD was called "You are not alone" for a very good reason. There are so many things that people break their hearts over in private thinking no-one else knows what it is like - from miscarriage through to incontinence. When you know the truth, it is still upsetting but you know it isn't you being "different" - it is a common part of life and you will get through it one way or another, And once you acknowledge it, you can go and get help to live better with it.

We always said in one charity - we should have taken shares out in Tena. Or maybe get them to sponsor us ...

oscarandchloe profile image
oscarandchloe

Just to add to the comments, I thought it was my pelvic floor muscles being undermined by PMR because heading upstairs I don't always get there without a dribble (and can't stop it). I think 'latch key incontinence' sums it up as I can stay out for hours and then go to a public loo without that urge. I do pelvic floor exercises now but when I need to go... None of this pre- Pred so it's got to be something to do with our medical condition and the drugs. Round face, baggy eyes, some extra weight, itchy skin esp scalp, thinned hair, mini-beard - that's us!

HappyDiamonds profile image
HappyDiamonds

Certainly is us. Luckily i live in a Bungalow, much quicker route 😀

Afwalsh profile image
Afwalsh

I never heard of D-Mannose so I thought I would share this....healthline.com/health/d-man...

Thanks for sharing that.

spacevoyager profile image
spacevoyager

Very sorry to hear about the incontinence HD and many others here who have posted.

Wanted to add that when I had PMR and not diagnosed, one of the symptoms was getting up every 2 hours at night to pee and feeling constantly like there was a boot pressing down on my bladder, very unpleasant. No infection, no diabetes. Was referred to a urologist which took 4 months. The bladder symptoms went away when I started on the Predisone after diagnosis. The urologist, I finally saw two weeks ago, but was symptom free at that time, said the bladder has muscles and would certainly be affected by the PMR. She thought it was from that as everything else checked out and the Prednisone seemed to clear it up.

Now I am going through a lot of stress due to moving, buying a building and selling my condo property all happening very fast. And this bladder thing has come back. So I am wondering if I should up my dose of Predisone for a while. As the boot on the bladder feeling is surely unpleasant.

Please advise.

PMRpro profile image
PMRproAmbassador in reply tospacevoyager

Now that IS interesting - because I have said that all along and have had doctors snorting at the idea ...

Have you any other PMR symptoms - is the stress causing a flare? It depends a bit on the dose at present

spacevoyager profile image
spacevoyager in reply toPMRpro

I have a lttle bit of right back/shoulder discomfort. Controlled by aspirin.

Started at 20 mg for a week, then 15 mg for 1 month, then have been on 12.5 for 6 weeks, which was fine, no symptoms till this stress. I have tried to pace myself, but moving, buying, selling property can get to me.

PMRpro profile image
PMRproAmbassador in reply tospacevoyager

Until the move is done I supect a bit more wouldn't come amiss. Even 13mg might be enough, or the odd dose of 15mg alternating with 12.5mg

spacevoyager profile image
spacevoyager in reply toPMRpro

That's what I was thinking too. Thanks.

And on the topic of the urinary track, I think there definitely is a connection and yes, the doctors do dismiss it. It was just this particular urologist who happened to know about PMR.

PMRpro profile image
PMRproAmbassador in reply tospacevoyager

Should get her to write about it ...

spacevoyager profile image
spacevoyager in reply toPMRpro

She is so busy. Took 4 months to see her. I will tell my Rheumatologist when I see her, hoping to anyway, a new one. She is in a research hospital and has a team. She would be more likely to write something. Thank PMRpro!

Amkoffee profile image
Amkoffee

I was surprised when I went to my doctor with the same symptoms and I had a UTI. I didn't have the typical burning when urinating or a fever. I was just having to go a LOT and I had started to leak a bit.

PMRpro profile image
PMRproAmbassador in reply toAmkoffee

The pred suppresses the inflammation that cause the burning fever ...

LCHRISTOP10 profile image
LCHRISTOP10

I experience urinary urgency if I use artificial sweeteners.

PMRpro profile image
PMRproAmbassador in reply toLCHRISTOP10

The Mayo agrees - so it must fairly common:

mayoclinic.org/healthy-life...

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