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PostPosted: Wed Feb 28, 2018 11:43 am 
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Joined: Thu Jan 05, 2017 10:38 am
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Location: UK
So, since my last post I've tried two other meds which had no effect. Yesterday I spoke to the Urology nurse who is now going to arrange me the full work up. Oh joy..!
Things shouldn't be put in those places.


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PostPosted: Fri Apr 20, 2018 11:56 am 
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Location: UK
So, I've now got a date for the full work up.
Someone please reassure me that it's not *that* bad?


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PostPosted: Fri Apr 20, 2018 12:22 pm 
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Joined: Wed Feb 10, 2010 2:03 pm
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Location: U.S.
When you say “full work-up”, what tests are they wanting to do? There are several. I’ve been through many and may be able to elaborate. They really “aren’t that bad”. In the next thread entitled “cystoscopy” on this board, I discussed in detail what transpires for another member. That may be one of your tests. Don’t sweat it. You’ll be fine.


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PostPosted: Fri Apr 20, 2018 2:54 pm 
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Hi Drew

The tests (scope, and bladder retention) are not bad at all its a bit uncomfortable but not painfull, if you can watch the screen seeing the inside of your bladder is interesting :)

Do not worry you will be fine and it will be over before you know it


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PostPosted: Wed Apr 25, 2018 8:20 am 
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Location: UK
Thanks. They said something about attending with a full bladder... haha.. and then seeing how I empty it and if I retain anything at all. Then putting something in the bladder to fill it with saline. Then getting me to empty again..

I guess it can't be that bad? They must have seen it loads of times before. It's just me that will feel uncomfortable.

My other concern is what if they decide there's 'nothing wrong'? I had tests back in 2000 and whilst I don't remember the tests, I recall them saying that there was nothing wrong that they could see. They then discharged me with no follow up. If they find nothing wrong and they discharge me again, where does that leave me... I guess they leave me suffering with no answers, the thought of this is stressing me out...


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PostPosted: Thu Apr 26, 2018 8:52 am 
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Joined: Thu May 15, 2014 4:59 pm
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The reality is that with OAB there might not bring “anything wrong.” That happens a lot with OAB. No known cause and nothing showing causation. Therefore they prescribe the general drugs, recommend bladder training, and offer Botox, PTNS, etc. all pretty standard.

When I did those test, the pressure was so bad that I shot out the catheter. Luckily they already got the readings they needed.

You’re not a fraud, and no one will treat you as such. You just need to go in informed and know what you are willing to try to lesson symptoms. Can you handle drug side affects? Do you want to try Botox injections? Do you want to try surgery?

Many of us could not take the side affects, did not want to do Botox because of diminishing returns, did not want surgery because it was not 100% gaurunteed to eliminate all issues. Therefore many of us manage our symptoms with diapers, and that’s it. Most urologists are fine with that approach if you have no other issues and have tried the drugs and behavior modifications to no avail.


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PostPosted: Thu Apr 26, 2018 9:58 am 
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Location: UK
Tarlton wrote:
The reality is that with OAB there might not bring “anything wrong.” That happens a lot with OAB. No known cause and nothing showing causation. Therefore they prescribe the general drugs, recommend bladder training, and offer Botox, PTNS, etc. all pretty standard.

When I did those test, the pressure was so bad that I shot out the catheter. Luckily they already got the readings they needed.

You’re not a fraud, and no one will treat you as such. You just need to go in informed and know what you are willing to try to lesson symptoms. Can you handle drug side affects? Do you want to try Botox injections? Do you want to try surgery?

Many of us could not take the side affects, did not want to do Botox because of diminishing returns, did not want surgery because it was not 100% gaurunteed to eliminate all issues. Therefore many of us manage our symptoms with diapers, and that’s it. Most urologists are fine with that approach if you have no other issues and have tried the drugs and behavior modifications to no avail.


Thank you.
I've already tried all the relevant drugs and they haven't worked, which is why we are at this stage now.
They did mention that they might suggest botox if they can find evidence to support a diagnosis of OAB. I need to do some research but I'm not keen on the sound of botox and I certainly don't want surgery.
Thank you for your support. It's helped put my mind at ease that I'm not going to be treated as being a fraud because I'm certainly not..!


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PostPosted: Sun Jun 03, 2018 4:47 pm 
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Joined: Mon Jun 30, 2008 12:33 pm
Posts: 1512
Location: MI
Drew81 wrote:
Hi all,

It's my turn (finally) for tests this Thursday.

I've been told they want me to turn up with a full bladder... haha! They then want to do an ultrasound of the bladder, a urine flow rate test and a prostrate examination. Before I go, I've also got to complete 3 days of a chart documenting what I drink and when I pee (leaks or of my own accord).

I'm worried that they won't take me seriously. Most of the time, I get no feeling I need to go except for a second or two of cramping before I start wetting uncontrollably. I also don't get any sort of feeling of the bladder filling up. Then other times I go pee normally. The times I go pee normally, I don't have any urgency or feeling of needing to go. I just go use the loo and try to make myself pee. My wife works in a nursery where she is often potty training kids and says it's basically like I'm back to that stage. You get the kid to try and sometimes they sit on the potty and go. Other times, they can have just been on the potty 2 mins before hand but then still pee their pants.

Anyone know or have any advice for the tests? What happens if they find 'nothing wrong'? Do they label me as a fraud of some sort? I'm not a fraud and I know I'm not. I'd love nothing more than to go back to having full control but I know I can't.

I'm also worried about turning up in a nappy style pad. I guess they see it all the time but it's still not something I want anyone to see.

Woah, is your bladder my bladder's twin? Or did you have it cloned and implanted? :P Your symptoms are identical to mine and I TOTALLY identify with the fear of being a fraud. My symptoms are all over the map and don't fit the bill of "normal incontinence" Whats most frustrating is i can have months where I am dry most of the time and then there are times where i wet heavily and every where in between. My symptoms have been light enough lately to the point where I THOUGHT I could get away with a midrange diaper vs premium.. um NOPE!

Hang in there! Your'e not alone!

Peace out!

_________________
"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II


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PostPosted: Thu Jun 07, 2018 7:34 am 
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Joined: Thu Jan 05, 2017 10:38 am
Posts: 64
Location: UK
sociologygeek wrote:
Drew81 wrote:
Hi all,

It's my turn (finally) for tests this Thursday.

I've been told they want me to turn up with a full bladder... haha! They then want to do an ultrasound of the bladder, a urine flow rate test and a prostrate examination. Before I go, I've also got to complete 3 days of a chart documenting what I drink and when I pee (leaks or of my own accord).

I'm worried that they won't take me seriously. Most of the time, I get no feeling I need to go except for a second or two of cramping before I start wetting uncontrollably. I also don't get any sort of feeling of the bladder filling up. Then other times I go pee normally. The times I go pee normally, I don't have any urgency or feeling of needing to go. I just go use the loo and try to make myself pee. My wife works in a nursery where she is often potty training kids and says it's basically like I'm back to that stage. You get the kid to try and sometimes they sit on the potty and go. Other times, they can have just been on the potty 2 mins before hand but then still pee their pants.

Anyone know or have any advice for the tests? What happens if they find 'nothing wrong'? Do they label me as a fraud of some sort? I'm not a fraud and I know I'm not. I'd love nothing more than to go back to having full control but I know I can't.

I'm also worried about turning up in a nappy style pad. I guess they see it all the time but it's still not something I want anyone to see.

Woah, is your bladder my bladder's twin? Or did you have it cloned and implanted? :P Your symptoms are identical to mine and I TOTALLY identify with the fear of being a fraud. My symptoms are all over the map and don't fit the bill of "normal incontinence" Whats most frustrating is i can have months where I am dry most of the time and then there are times where i wet heavily and every where in between. My symptoms have been light enough lately to the point where I THOUGHT I could get away with a midrange diaper vs premium.. um NOPE!

Hang in there! Your'e not alone!

Peace out!


Hey,
How spooky that we are getting the same symptoms...!

So, I had a Urodynamics test this morning. Massively undignified, but it got me a result.
I've just been diagnosed with an overactive bladder. So, now it's back to the consultant to see what they can do about it. I've previously tried all the meds with no effect and I really don't want Botox. So I suspect the answer will be they can't do anything but I'll listen to what they've got to say.
At least I've got a diagnosis.


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PostPosted: Thu Jul 05, 2018 7:04 am 
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Posts: 1836
"Massively undignified" indeed. As you discovered, the fearful anticipation and embarrassment were worse than the test. But you now have a diagnosis, so it's on from here. Good luck and keep us informed.


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