Bladder issues

Hi all not been on here for a while fell like I been in a constant flare this year, I now have too self catheritise myself 2/4 times a day due to chronic retention, this was from tests with the urologist, no surgical option for a cure and possibly in future will need a catheter in situ. Anyone else have this with uctd I've been told it's known as an ms bladder and rare in women without ms, cos of my dexterity in my hands and recent cuff repairs in my shoulders one from dislocation my hubby has to help (done wonders for our sex life) when will this condition be more recognised might as well say I got ABCD most health professionals don't haven't a clue what it is, sorry for rant but the thought of a super pubic catheter has made me feel so down, didn't think uctd effected us this way, gp thought my condition would settle and more or less said it would go away.

Any support/advice would be most appreciated 😟

4 Replies

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  • Hi JV. Its so refreshing to find someone else with this problem, not that I'm happy you have it of course. I have had retention on and off for years and periodically catheterise but despite strings of testing, no reason has ever been found. I have been previously tested for MS several times which luckily was negative. To make things worse and really confuse my urologist, I have started to leak when bladder is full and have a urgency. Through the years I have found no pattern or triggers it just flares when it wants and I just have to cope. It's really not pleasant to live with I know but hopefully yours is just a big flare and will settle soon.

    Fingers crossed for you X

  • Hi

    I am the same. Glad to know someone else as this problem but sorry that you have to go through it

    I have chronic retention and was having frequent bladder and kidney infections for no apparent reason. This was about 10 years ago and started to self catheterise 2/4 times a day but now I have to do it all the time

    It is not pleasant but have learnt to live with it as you say there is no cure

    I also take a small dose antibiotic each night and on the plus side I do not have the infections so often

    I also sometimes leak when not able to get to the bathroom in time

    This Lupus and all that is associated with it really is the pits but we just have to grin and bear it as what is the alternative?

    Hope you feel better sooon x

  • It's crazy isn't it that we have retention, yet leak !! Surely if our bladders can pass urine some of the time why can't they do it all the time. Mind boggling.

  • I had retention after a bowel operation obstructed, and I think the bladder nerves were damaged. I had constant infections as could only wee about 50ml, so a lot of urine was left in my bladder. Eventually I had to go on to self catheterising, I could manage this in the day but not at night. I had a pressure test in my bladder, and it seized up completely, not nice!

    It was suggested that a supra pubic catheter would be suitable. If I had that choice again I

    would not have agreed and would have stuck to self catheterising, as I now have to wear incontinence pants and a big night pad accross the hole, to catch the constant dripping.

    I can't swim now or bath as I am anxious of water getting in the hole.

    I think I was perhaps unlucky, I hope you make the right choice for yourself, good luck.

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