Update from last/Bladder issues etc

Pandasloth99
Pandasloth99 Community Member Posts: 10 Listener
in Autism and neurodiversity

Hello again,

Since my last post I ended up in A&E on Sat. Was there 9 hours.

I had a urine test, blood tests, bladder scan. Given antibiotics.

The upshot is that I have a kidney/upper urinary tract infection and have been given antibiotics. Feeling a bit rough.

Anyways went to my GP today and I've got a theory about what's going on. I've always had bladder issues lots of accidents as a kid (and beyond but learnt ways to hide/avoid).

I think my interoception is the issue so I don't register cues properly and therefore I'm peeing sometimes when I don't need to due to heightened signals and sometimes not peeing when I should due to muted signals.

Because I'm in burnout and ill I think everything has sorta collapsed? And got more tangled than usual.

I'm setting a timer to pee for every 2hrs. Yet sometimes I'm feeling the urge and leaking even tho it's only been say half an hour since last pee and other times nothing. These don't always line up… in A&E my bladder scan showed 6ml of urine but I felt desperate and was leaking.

So I think this is mostly autism related combined with infection and also my duplex kidney may be a factor depending on its anatomy been referred to a urologist to see if it's causing the leaking issues specifically or whatever.

I'm also on testosterone as I'm trans and so I've got a bit dry 4years in so I'm now realising the leaking isn't new it's just more obvious because of dryness and burnout making things feel loud.

Can't believe I'm saying this but seeing a urologist and then dependant on that looking at a referral to an incontinence nurse possibly.

The more relaxed I am the more I leak or if my attention is elsewhere I may not notice it and bladder signals go silent.

Lot to think about I guess

Comments

  • Mary_Scope
    Mary_Scope Posts: 6,181 Scope Online Community Children and Family Specialists

    Thank you for the update @Pandasloth99. Sounds like you have had a rough few days!

    It's good that you managed to go to the hospital for further treatment and medication, do you think the antibiotics have startled to help?

    It sounds like seeing a urologist and potentially an incontinence nurse could be a step forward to helping you find out what's going on and figuring out a a treatment plan.

    How are you coping with the infection pain right now? Do you have enough support at home while you rest up over the next few days?

  • Pandasloth99
    Pandasloth99 Community Member Posts: 10 Listener
    https://forum.scope.org.uk/discussion/comment/1151012#Comment_1151012

    Hi Mary,

    Thank you 😊

    Definitely I think with everything going on my body has sorta been under sp much stress it's made me more well broken physically.

    Hard to say yet, today is day 2. Got one more dose tonight. I think they say 48hrs should see improvement. My neck has decided to seize up and is very painful idk if it's related to stress, antibiotics or infection possibly all of the above.

    Yeah hopefully I'm thinking most is related to being Autistic but if my duplex kidney anatomy offers a physical reason along side it would give some extra help/fix that issue possibly. Would at least give a clearer picture.

    I live alone so not really but I'm managing. Have to go to an appointment tomorrow to help with my UC50 form and have to do a few important jobs in town but after that should have a good few free days without anything urgent hopefully.

    Thanks again

  • Rosie_Scope
    Rosie_Scope Posts: 9,797 Online Community Team

    Ouch @Pandasloth99, that sounds painful. But it's good they've got you on some antibiotics. I think setting a timer to pee sounds like a good way to do it if the interoception issues aren't helping. Hopefully you'll start to feel a bit more comfortable now you're treating the infection too.

  • Pandasloth99
    Pandasloth99 Community Member Posts: 10 Listener
    https://forum.scope.org.uk/discussion/comment/1151036#Comment_1151036

    Hi Rosie

    Thank you 😊

    Yeah, the timer seems to be working quite well. Sometimes I feel nothing so normally wouldn't chose to go then but I'm then suprised at how much I actually did.

    So I think this could've caused the infection if signals are all confused.

    Thanks, hopefully tomorrow should start seeing some improvement.

  • Rosie_Scope
    Rosie_Scope Posts: 9,797 Online Community Team

    Fingers crossed for improvements over time! How are things feeling now @Pandasloth99? Do you feel like the antibiotics are starting to kick in?

  • Pandasloth99
    Pandasloth99 Community Member Posts: 10 Listener
    https://forum.scope.org.uk/discussion/comment/1151432#Comment_1151432

    Hi Rosie,

    Yes, last day of antibiotics tomorrow and things feel a lot better.

    Still on my timer and it's really helping tbh. As long as I remember to set it... Trying different things. 2hrs atm but hoping to stretch to 3 at some point.

    I feel very weird about it but ended up ordering some more pull ups. Not to use like before but I'm a bit all over the place and recovering and going out on Tues on a long ish bus journey and while out I don't want to add stress by trying to remember my timer or if any issues arise. Sort of a safety net while I heal and going forward may use at other times ie traveling, stressful times idk.

    Anyways thanks for checking in.

  • Rachel_Scope
    Rachel_Scope Posts: 5,417 Online Community Team

    I'm glad things are getting a lot better @Pandasloth99. I think ordering more pull ups is a sensible idea if you have a long journey coming up. It's one less thing to worry about. Are you going anywhere nice?

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