Why dont you ask your Doctor to prescribe desmopressin just for for the day. It cuts the volume of urine by making ıt more concentrated so you wont go through so many pads that day, and with a tape on disposable nappy style pad (especially one recommended for night use which can have a much higher capacity than any pull on) should get you through a few hours without even having to go to the loo.
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Good idea. But ask for the type that you spray into your mouth, as I’ve been told it works better. I’ve tried the tablets and they didn’t do a brilliant job but the spray is supposed to be the business.
Well, I’m still waiting for my referral to urology! My GP told me to try Betmiga for six weeks, and if it wasn’t working to give him a ring. I’ve been on Betmiga for a little over six weeks and no change.
However I saw my neurologist almost two weeks ago. When I told him he said he would write to my GP and ask him to refer me to urology. I’ve rung the surgery this morning, to date no letter has been received.
So, I’ve left a message for my GP asking for the referral I’ve been wanting since March and trying to get since May.
Any bets on how much longer I’ll have to wait, or if I’ll ever get to see a urologist?
Hi Eve
It’s crazy. Why don’t you make an appointment to see your GP and get a different drug to Betmiga. Have you tried Vesicare or Tolterodine? Might be as well to steer clear of Oxybutynin as it’s side effects are crap and there’s the problem of it crossing the blood-brain barrier. You can then ask your GP whether they can refer you to urology without the letter from your neurologist. And if that’s possible, can they ask for the referral to be fairly urgent as you are really suffering.
If you’ve tried all the different drugs and none of them work, or only work a bit, then botox is clearly the answer (or even if they do work, as the least number of drugs you take, the better really), and once you get to see a urologist, I’m certain they will say the same. The trouble is that getting the urology appointment is only step one, you then have to have a urodynamic test and then wait for the actual botox treatment. And even then it can take a good few days for the botox to start working.
So basically, I think you need the appointment asap to get the flipping ball rolling.
Sue
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Success at last!
Sue, I’ve tried vesicare, Tolterdine, oxybutynin (yes awful side effects) and finally Betmiga.
The surgery have just rung to let me know that following this morning’s phone call from me the referral has been done, and that I’ll get a copy letter by post.
Now it’s a question of how long I’ve to wait for an appointment. It’s the how long is a pice of string question again I suppose!
I’m so glad you’ve at least crossed hurdle number one. Now all you have to do is wait for the appointment. In about a week, I’d try phoning the hospitals waiting list department to see where you are in terms of an actual appointment, or try the urology departments admin people. Just in case there’s any way that being nice to them actually results in getting a cancellation or moved up the list!!
Sue
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Always worth getting a private appointment to see these specialist - then they will fast track you for further tests etc.
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I can’t help but think that there is a policy to keep fobbing patients off in the hope that they’ll eventually give up, or in the case of older patients until they die!
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Hi, I think I do better than some in my area. 2 weeks ago I had a telephone appointment with my GP, to discuss bladder calming drugs, as the spasms are so painful. She said I`d had everything going and had I thought about botox. I said I had and would like to see the uro again (I had an spc fitted 3 years ago).
So she offered to refer me…but was I I gobsmacked when she then said Hold on, I have a list of available appointments in front of me. She gave me 1st September!!!
Amazing eh?
Hope you dont have to wait too long chuck.
I dont see why your neuro couldnt refer you to a uro!
pollx
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And so it continues. Today I got a letter from my GP giving me details of how to book an appointment with Urology. I opted to do so online rather than risk being kept on hold on a premium rate telephone number.
i provided my ref number, year of birth and password and was taken to a page with the warning “there are currently no appointments available” I had the option to continue and the next page tells me I will be contacted.
It also told me that there is an approximate wait if 34 days for an appointment, then 92% of patients wait 20 weeks for treatment to start.
Looks like I’m going to be waiting for a while yet.
Make an appointment privately - see someone in less then week - might cost £160 - 180 - but will get you fast tracked. Do google different urologists and decide who you would best like to see. Worth every penny.
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Yes, I agree with spacejacket. 20 weeks following a months wait for an appointment is unconscionable. If you can afford to see a urologist privately, Eve, then do. You can always transfer to NHS following an initial appointment.
You have been made miserable by your bladder problems and it’s just plain wrong that I had botox treatment that I didn’t need relatively quickly, and you are having to wait so long.
The ‘postcode lottery’ NHS system in this country badly needs fixing.
Sue
My friend had a hip replacement done privately - last year. She now needs the other one done - and she found out about the ‘Book and Choose’ method - gives you the choice of when and who does your op - all done in private hospital - but on the NHS. So she is going next week to the same hospital/surgeon for the other hip to be done - this time on the NHS. Which cost her £11,000 - last year.
l was amazed - and was telling another neighbour about it - and she said she did the same with her knee replacement op. Now l have heard of two more doing the same.
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wow! £11k for an op…I went private initially, to see a neuro, as there was a 10 month waiting list, back in 1999!
After my first appointment, which cost £200, I transferred to the NHS.
pollx
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Poll - this was total hip replacement.
Frankly I can’t afford to pay. I’m not opposed to private medicine, but I don’t see why I should have to pay for this. I’ve had to pay for so much already. This disability malarkey is expensive. I’ve spent thousands of pounds on adapting our home. Alterations to the front door and ramp, wet room, wheelchairs, mobility aids, mobility scooter, not to mention the money I spend on physio every fortnight which the NHS won’t provide, the fact that I have to pay for a cleaner because I can’t do it myself, alterations to the garden to make it easier and cheaper to maintain.
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