I’ve had slowly progressing bladder troubles, started with hesitancy, and odd smelling urine, the specialist said I had a cystocele and needed an operation to ‘hold my bladder up’ as it had fallen over a bit (EDS & naff collagen probably!). The hesitancy problem eased, although the odd smelling urine didn’t (which, as they said it was because I wasn’t emptying my bladder fully, I expected this to be resolved – but no). I personally think there is something irregular that we are passing out within our urine, that would be a ‘test positive’ for our condition – if only I (or someone else) could work out what it was!!
Anyway, following this op, I seemed fairly ok for a while but then I had a hospital test that applied traction to my cervical spine (and consequently, the spinal cord) and new symptoms started immediately. (Incidentally they said I had occult tethered cord, at the time). I lost the feeling of a full bladder, so then had to ‘manage’ the emptying of my bladder based on what quantities I’d had to drink and how long since. If I forgot, I had leakages, just by leaning forwards or altering position – and the worse thing, I couldn’t feel that I was passing any urine when this happened!
Intermittently, I got the feeling of a full bladder back and this led to ‘urgency’, if I hadn’t been to the loo sufficient enough. To cap it all, I could no longer empty my bladder completely, in the normal way just by relaxing, this only emptied about a third of it. So I have to then press on my lower abdomen with my hands, this releases another third. I then have to strain and tense up my abdomen (to apply internal pressure) and this just about empties it.
I had the uro-dynamics test that showed just 50mls remained and they said they would show me how to self-catheterise but I declined, as I felt I was managing ok as I was. I was told there was a weakness in the detrussor muscle.
The point of this lengthy post is that, with good management, you can avoid those embarrassing leaks, you just have to make sure you empty your bladder more regularly than you normally would, so that there is no build up of pressure within the bladder (that maybe you can’t feel). That way, you are still relying on your own body (in a fashion) to carry out the full function.