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UK paruresis trust

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pee shy and the urology department

Posted by martin on 27/11/2008, 10:06 pm

Hi I am a long time sufferer of bashful bladder I had to go to the urology department this week as I have been stuggling with a weak flow it was the worst nightmare I have ever had. firstly It was packed with people and the nurse hands me a sample bottle and asks me to put it on the side when I had been to the loo. of course this was near impossible but after about half an hour I managed to force one out when I saw the first doctor I explained to him that I suffer from bashful bladder his answer to this was to say what is that then? I said I can not go in front of people or on demand he just smiled and said lots of men have this the thing is I dont think he actually relised how bad I have it which I was quite surprised with that. then I had to have a camera down my penis to check my bladder everything checked out alright I tols the doctor who did this about my problem and they did not really no either but now they want me to do a urodynamic test which involes me peeing into a urinal with a flow measure on it which is going to be impossible for me to do this on demand I told my wife I can not go back to do this a fell like a complete idiot I just wondering if any one else has had to do somthing like this are can suggest doing any thing else thanks

Re: pee shy and the urology department

Posted by Andrew on 28/11/2008, 8:07 am, in reply to "pee shy and the urology department"

Hi Martin

First you are not a complete idiot for feeling like you do. As the doctor said, a lot of people cannot pee on demand; GP practices come across this often, and let people do a sample at home and bring it in later.

I hav had the camera up the rethra as ewell, and done the urodynamic test. The thing is that it is in a littel room on its own, like a private toilet.

Say to the doctor or nurse that you are very anxious and are not sure you will be able to do it, but whatever, you do need no time pressure, say you want 15 or 30 minutes, and you dont want to feel that you are being waited for. Then go in the room and dont try to pee; sit down and give yourself time to get used to being in there. If and when you get over the initial nerves about being in there, have a go. no-one can hear you, and everyone is very busy doing their own thing.

If you cannot go, it is not a big issue. Explain what your flow is like when you are at home. That is more useful to them.

Secondly, if you email me your address, I can send you our brochure, which you can give the doctor. That way it is not you, instead they can see it is a recognised condition.

i hope this helps

Andrew

Re: pee shy and the urology department

Posted by Mark on 28/11/2008, 8:32 am, in reply to "Re: pee shy and the urology department"

Hi Martin,

That must have been the worst feeling ever! Its easy to see why this condition can get people so down! I once had to produce a urine sample at the doctors but told him I didnt need to go, so went home to do one which there were no problems with.

Andrew has given some great advice as always so take that on board and remember what you have doesnt make you an idiot or a freak, its just a small, annoying little problem lots of us have.

Mark

Re: pee shy and the urology department

Posted by Steph on 28/11/2008, 8:03 pm, in reply to "Re: pee shy and the urology department"

My AP pretty much started when I was around 12-13 after a uro-dynamics test as I was asked to pee naked in front of nurses and doctors and a big X-ray machine so I know how scary it can be (especially for a 12 year old)... It eventually took me an hour to start after 10 trips to the cubicle. Although my AP got much better over the last ten years (am now in late 30s) I had another uro-dynamics test 6 months ago and unfortunately once they had filled my bladder with 750ml of water, I was unable to empty it,even when left empty in the xray room. I felt a bit stupid but they told me that it happens all the time and that they can still get valuable information on how your bladder works even if you don't empty in front of the X Ray at the end. So don't worry too much about it. You won't waste anyone's time, valuable data will still be collected and no-one will blame you for anything if you don't void. You should ask them if you can start peeing for 3 secs in a separate cubicle and come back in front of the machine when you are more comfortable. I didn't think of doing this time and I regret it a bit. Good Luck.

Re: pee shy and the urology department

Posted by Ben on 2/12/2008, 12:07 am, in reply to "pee shy and the urology department"

You have brought back all my worst memories! That whole system in urology depts needs to be re designed to give more dignity and privacy. My experience was almost identical; large open plan waiting room with reception desk centrally positioned...no privacy....instructions given in a fairly public way so one is made to feel, as you say, 'an idiot' and so I didn't even try to explain. The Dr was kindly but offered no reassurance or even conversation about it all, even when I totally failed to produce a sample!(I didn't know it was called a urodynamic test.) At the time I had not found this site and didn't really recognise that I had a condition with a name...but the Dr certainly didn't seem familiar with my problem...or perhaps he chose to ignore it ?
In the end they reckoned I had a benign prostate condition so closed my 'case' and offered self catheterisation and tamsulosin. As I had had to be catherterised twice in emergency situations in A&E I had visions of the same sort of catheter with leg bag etc as, again, he offered no reassurance or explaination that these were different catheters etc. It wasn't until I saw the (female...20 something....!) nurse that I realised the catheters were different. They have been a life saver ever since. (I don't want to sound sexist but in the state I was in when seeing the Nurse, I think I really would have valued a male...with some experience....is that asking too much?!I felt such a freak even though she was quite professional.)
Can there be any dialogue with Urologists...is there an 'Association of Urologists' we could talk to about how the clinics are organised?
Martin I can only suggest that you see it through to some sort of conclusion by letting them check that there are no clinical conditions which can be ttreated then asking for catheters ...and perhaps a weekend course....to manage the whole thing better.
Good luck
Ben

Re: pee shy and the urology department

Posted by martin on 2/12/2008, 6:28 pm, in reply to "pee shy and the urology department"

Hi guys thankyou for your advice I will send you my address andrew that would a real help thanks. I think I am going to cancel my urodyanmic test till I fell a bit more confident I am going to start by trying to go in front of my wife which in 17years I have never done I might even pluck up the courage to come to one of the workshops its time I did somthing about my phobia as for some reason it has seemed to get worse the older I get in my 20s I was a really out going person and It did no really bother me I just used to wait for cubicle to be free a bit embarssing somtimes but I just lived with it then they started putting bouncers and toliet attendents in pubs and clubs in manchester and I just became a bit of a nightmare. so I stopped going into town etc and my confidence just started to go now I worry about going to the loo even if I am going to a local pub and it does not help the fact I now have two young sons one is 4 years old so I try my best to make him were possible use the urinals as I think my ap comes from having a slightly older sister and my mum always taking us to the toilet in a cubicle so never really got used to he urinals Thanks again for the responces hope I have not bored you with my life story cheers Martin

Re: pee shy and the urology department

Posted by Andrew on 2/12/2008, 9:58 pm, in reply to "Re: pee shy and the urology department"

Hi Martin

No you have NOT "bored us with your life story" :-) it is interesting and sadly only too common.

Well done for deciding to go in front of your wife. You dont have to start in front of her. Start by drinking a load of water, say two pints, and waiting till you get a good strong urge (it may take up to an hour). Then ask her to be somewhere (e.g. outside the bathroom door, or even downstairs) so that you are sure you will be able to go. Make sure she is occupied, reading, watching TV. Then go, but pee only for 3 secs, so as to maintain your reservoir. Then bring her a bit closer; repeat the process with her coming closer. If your urge gets too low, wait for it to build up again. That way yo will make prgress in small manageable steps.

Well done for looking after your sons. When you can go with your wife in the bathroom, perhaps you could get used to going when your sons are in the bath? If it feels natural that is. If you can do that, you will feel comfortable with your sons, and may feel able to go when they are with you in public toilets; starting with quiet ones that is ;-)

And do come to a workshop. The courage is needed for booking on and turning up; the rest is much easier. the oether guys are always a great bunchL: I should know, I've met 250 of them on workshops (but not all at once)!

cheers

Andrew

Re: pee shy and the urology department

Posted by Mark on 3/12/2008, 8:24 am, in reply to "Re: pee shy and the urology department"

Martin,

You are right in thinking that AP can come from how you were brought up as I think it was with me. Teaching your son at the age he is now to use the public toilets or even better the urinals when you are out and about is a good idea. Maybe stand next to him at the urinals, will he even notice you're not peeing?

Mark

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