But the NHS Urology Clinic at our local hospital is a depressing place to be whatever your situation.
Particularly when you arrive with an empty bladder, having just made sure to pee behind a tree in the park on your way there (and no, I'm not ashamed; lost that ability long ago; and it's easier squatting down right now to be honest; don't think anyone was looking except perhaps a local perv or two) to avoid the dirty hospital toilets, only to be told 'hope your bladder's nice and full , darlin, you're doing a flow for us today'.
What this meant in practise was drinking 8 plastic glasses of hospital water, to be escorted into a makeshift 'flow room' (backroom toilet), where I was then instructed to pee into a kind of metal machine, followed by an ultrasound scan. As I had to wait at least 5 minutes for the scan, I asked if I could pee again before the scan. But there was still 12ml residual in my bladder (I was told anything under 100ml they don't worry about, but still my mind is whirring around it now, as I had peed again so what if there was more if I hadn't.... at the time I was not worried but now I'm worrying.... just the way my mind works..... ).We then went in to talk to the consultant; me really tense, flanked by my lovely friend whose main job was to keep me calm. I was all set for another conversation about how Elmiron isn't licensed in the UK and its scientific benefits are not totally proven etc... only to hear my consultant say 'well, I've done it; I've jumped off the cliff - I just thought, sod it'.
Strange words, perhaps, but I hadn't driven him to total desperation; on the contrary he explained that he had in fact requested a discussion with his head of department at the Urology Clinic, who is in charge of finance, and they'd decided between them to put in a request on my behalf to trial Elmiron for 6 months.
This is a big shift from where he was standing even a week or two ago. It means that I am in with a chance of being allowed to try a drug which just might, just might really help me. It doesn't mean that the Health Trust will say yes. They might say no. I might still have to get another opinion, go to another postcode. But it means a chance.
And it means the world to me that he is taking my case seriously enough to do this for me.
I'm going to write and thank him. (Oh, and ask him about the residual urine too!)
I keep hearing about a device called a 'she wee' that allows women to pee standing up. Maybe you should look into buying one so you don't have to squat! Lol. Reminds me of my drunken teenage days, squatting round the back of Tescos or the all night garage, totally pissed (no pun intended) and not caring. Pissed and pissing. Lol.
ReplyDeleteSo glad your uro is willing to try you on Elmiron and has been proactive in helping you to obtain it. I was thinking of trying it too, but my bladder is no longer inflamed or full of mast cells according to my previous Uro. So I'm not sure I am a 'candidate' for it. It seems my bladder wall doesn't need replenishing. The problem is my nerves being hypersensitive, and the fact my bladder doesn't contract.
Do you know what state your bladder wall is in? Do you have mast cells or hunners ulcers etc? Look forward to hearing how you get on!
hi there, thanks for your comment. no, i NEED to squat to relax the muscles, as I also have PFD so the muscles are so tight that it's the squatting position that relaxes them... Yes, I too remember being pissed ! Not anymore though!
ReplyDeleteAm crossing my fingers for Elmiron. Have mast cells ++ in lining and detrusor muscle and glomerulations; no ulcers though. So yes am a candidate. Am in so much pain and it is affecting every single area of my life.
It still has to be approved by the pharmacy though.
Will keep you posted - keep reading and good luck with fighting your own fight!