Well I have been discharged now from the local hospital pending a referral to another hospital where I will undergo PAE. But the thing is the referral hasnt been completed yet. The UK NHS is a big slow turning wheel at best!
I did ask my GP to be referred to have a PVR test but nothing has happened.
You have to chase and chase and chase to get anywhere. WE are unique
in the world I guess though. Are you in UK?
I take your point on the IPSS score, however it has never been determined for me. I guess I will have to test myself? I will look it up. I am going to hold out for a Scan to test my PVR, hopefully it will be soon.
Yes, you do the test yourself. Takes less than five minutes. I will send you a link to the test via a private message.
Thanks Jim.
My score was 14. But I found it quite hard to answer to be honest.
I have improved every day in the month since having the catheter out.
Also it really depends massively on how much I am drinking and what.
lots of Coffee and alcohol my two staple drinks make me pee every 30 minutes or so with urgency. If I avoid then its much less. I never drinkn water on its own though. But maybe should for a comparison. bit confused to be honest.
I was 29 (severe) at my worst just before I started CIC but I certainly don't recommend people to wait that long. At that point I literally had to push the urine out of my bladder using the palm of my hand. Now, I'm 7 or 8, which sometimes I can't believe but that's what it is. No idea if it will stick but enjoying it while it lasts. Probably the last time I was a 7 or 8 was in college!
Jim
7-8 is very good from 29!
Do you take any of the natural poducts for BPH?
I am on Saw Palmetto, SNRE, and Pumkin seed. Maybe I should stop to see if it makes a difference! lol
Yes, I'm in the UK. It took me about two months to get my local NHS hospital to agree to refer me to Newcastle after I had contacted them and they had agreed to take me as a patient if referred. Then they had to agree to pay the other area health authority for my treatment. That also took several months.
We are entitled to be referred to another hospital of our choice if our local one does not do what we need if of course they agree that it is appropriate!
No natural products. I took some once and didn't notice a difference, but that doesn't mean they might not work for some. The only thing that helped was daily Cialis, and even that stopped working mostly after a few months. Haven't taken anything in about a year. BTW I sent you another private message your IPSS score question.
Seems that your local hospital is lacking in its duty of care if it does not ask you to fill in a form for your IPSS score or check your PVR.
Have you done a flow test there? All of those things were happening for me in 1994.
I am glad you fornd something that works...Ken
Any caffeinated drink will increase your urine output.
Do you keep your liquid intake to just below 2 litres a day?
I'm glad that it worked out for you Ken
Thanks, Ken. You know they talk about "bph" like it's one thing when it's really a catch-all for a whole bunch of urinary symptons. So my bph is not your bph and what may work for me may not work for you. Unfortunately, a lot of doctors are either too lazy or not trained well enough to understand that and tend to formularize their treatment. Our job as patients is to research and challenge the doctors to make sure the path they are sending us along is the best one for us, not just the path they are used to. My advantage here in the U.S. is that it is very easy to switch doctors with Medicare, so if you run into a road block with one, you see another.
Jim
Ive never filled in a form and have just been discharged (got a letter the other day). There was in any case no talk ofg any follow up. THey just pass it all back to the GP who then ignore you as well!
But my hospital is in on the list of being below whatever the standard is that is required so it doesnt surprise me! As you say not very good really especially as they know I have had AUR twice in 3 months!