Anyone here had mentioned painful bladder syndrome or interstitial cystitis?

Hi everyone.. been struggling for a very long time with my daughter and at the moment it's highly possible she has painful bladder syndrome or interstitial cystitis.

I'm struggling to accept that she is now old enough to explain her pain more and the fact she is in pain every day.. is anyone else dealing with pain as well as wee every day and night...

I feel so useless as a mum that my little girl is in pain and I'm not doing anything about it.. :-(

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  • My LG of 5 is becoming more and more vocal & about her incontinence. Several times a week we have her exclaiming... "...i just can't stop weeing!!!!" Currently on oxybutynin, movicol & trimethoprim. Worst pain I've ever known for her was when she had chickenpox. It was a living nightmare and broke my heart. Totally understand the feeling of being useless! We seem to make so little progress, that I question what is working on a daily basis.

  • Oh it's horrible seeing our kids feeling bad isn't it, but at least she has you there to comfort her. You'll make a big difference to how she feels just by being there for her and being her mummy - just need to keep going! - hopefully things will improve soon if you have the right diagnosis..?

  • Unfortunately process of elimination of other things at her age but yes they are pretty certain now that it's this... had so many tests now and scans, ultrasounds, bloods etc etc...

    We are on daily antibiotics and oxybutin but struggling with side effects so might be trying something else soon...

    Only time pain goes is while she wees.

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