Managing Interstitial cystitis

[Talice]

Hi there,

I’ve been living with this condition for a very long time. I’ve had surgery’s and treatments but I’m still suffering greatly. I have to catheterise multiple times a day and have to do installations twice a week, but my symptoms are still awful. I know there’s no cure but just to make it more liveable I’d appreciate some ideas.

Thankyou

[Crafts60]

Have u tried having ur bladder distended I find it help some

[Talice in reply to Crafts60]

Hi there,

Yes I have had this done, along with lots of other treatments and medications. I’ve been juggling this for years and it’s just got to the point of ‘we’ve tried everything’. I just can’t think this is it. So when it’s really awful I’m just out of ideas as to what can make it slightly bearable. At the moment it’s just exhausting.

Take care

[bantam12 in reply to Talice]

In your shoes I would be asking about bladder removal op.

[Talice in reply to bantam12]

Hi,

It’s something that my urology team thought was are only option left and yet my consultant won’t even consider it. We know it’s total the last resort but we have honestly exhausted all the options and now feel we are just delaying the inevitable. My consultant seems to think that actually even if they took the bladder away I could still have problems which we don’t really understand. I’d be interested in talking to anyone who’s actually had the op and their outcome.

Take care

[Crafts60 in reply to Talice]

I have had this for years I have been taking Elmiron I just hope mine does not get worse it seems I am being diagnosed with a lot of things here lately tomorrow I go to kidney specialist hope u get to feeling better will b thinking about u have a good evening

[Talice in reply to Crafts60]

Hi there,

Hope everything goes well with the specialist. How long have you had this? I’ve been through the stage where they just label lots of things but nothing really changing. It’s just exhausting.

Take care