Decided.

I've been 'too chicken' to do this for years (well, actually it's because my local hospital is horrible and I've had one too many bad experiences there, first hand as well as when my Grandad was there dying and how awfully he was treated). But now patients are allowed to CHOOSE their own hospital, I am going to do it if I have do.

Do what?

Go back to see a urologist.

You see, they wanted to do urodynamics tests on me and my cystoscopy was so awful (done by an intern, and not very well I might add!) that it put me off having any further investigations at that hospital and I discharged myself.

But now what I figure is this- if I can't take desmopressin OR if it doesn't help, I need to try and find something that does/will. I heard a while back about interstim therapy, a sacral nerve stimulator that can help bladder conditions, but I thought you had to have interstitial cystitis to have one. You don't.

Now that I am diagnosed with a neurological condition, I feel I'd be more able to push to have one if other therapies don't work. The oral medication I am on now DOES make a difference, but it's not enough. If I leave the house, I still get ultra potsy because I can't keep my fluids up as much as I would were I near a bathroom- because my bladder capacity is so reduced due to my nerves not working right. If this sacral nerve stimulator could help to increase my bladder capacity, then I'd be able to drink more and would thus be less potsy. That way, I might actually be able to live a more 'normal' life.

So, depending on the outcome with desmopressin, I'm going to see a urologist AT A DIFFERENT HOSPITAL about it. At this point, ANYTHING that could help me with my bladder symptoms I would be willing to try, because they make dealing with pots so impossible, plus as much as I do drink I think I pee it right back out anyway!!

So, just waiting to see what my specialist says about desmopressin... if I can try it and it works, great. If not, urology here I come...