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Just got back from an appointment to see a urologist; I wanted to get trained in using (CIC) clean intermittent self-catheterisation (as a fool-proof last resort when fluid loaded for graduated exposure therapy in public toilets should sections of the cubicles be closed off, this has happened in the past).
Before I got to see the urologist a nurse called me and showed me the toilet, gave me the sample bottle. I told her I didn't need to go right now, she said, "You must be able to go! Just a little bit?" I went into the toilet (right next to a very busy waiting area), next to the toilet pan an open hatch (to leave the sample bottle). There appeared to be several people in the room through the hatch with radio turned up loud. It wasn't going to happen so after a few minutes trying I gave up and sat back in the waiting area, no sample provided.
Went in to see the urologist, showed the ukpt leaflet "do toilets make you nervous?" and Steven Soifer's book. He said that he had been practicing as a urologist for 15 years and had never seen a patient with this issue before! Just goes to show how well people hide this disorder.
He was unwilling for me to be shown CIC at this time (worried about possibility of infection, damage to bladder and he thought I would become reliant on CIC for the rest of my life). At least he said he would ensure my GP made an appointment for me to see a clinical psychologist with specialism in anxiety disorders and would consider me again for learning CIC in conjunction with that.
I definitely think that more education of medical professionals is needed regarding AP, I find it hard to believe that even urologists haven't heard of it.
I completly aggree with you and can relate to the above.
I went to see a urologist last year for the same reason. On arrival, I had a sample pot waved in my face and was showen the toilet. I said I dont think I can, and the nurse patronisingly said 'try'! I did manage to go luckily lol.
My GP had never heard of it (despite me telling him this about 6 years ago, where he said self catherisation had too higher a risk of infection) but this time round he said that it would be a good idea to use catheters for 'emergencies'.
The urologist and the trainee he had in with him had never heard of this condition either. But after explaining how it affects people and about the UKPT, he aggreed that self catheterisation was a good idea and refered me to a nurse who later showed me how to use them and gave me some to take away with me.
Iv only used self caths about 10 times (some without washing my hands - no facilities available) and iv had no problems atall. Is there a way of contacting the urogloist you saw and say 'if got a long flight coming up that im anxious about, so what do you expect me to do WHEN Im unable to go? Leave the tap running?!'
It would mean that you would not have to see a clinical psychologist, which Im not too sure would be of any help. Im under the impression that it is your right to use catheters and that you are able to insist, but may be wrong.
Sorry it didnt go as planned for you, I hope you can find a way round it.
Catch 22 I went to see an incontinence nurse (and most hospitals have one) in order to get catheters as I had a problem peeing except in my own home. She asked me to pee a sample. I went to the bathroom and managed. When I came back to the nurse she said "There you have managed to pee and therefore you do not have a problem peeing in public places". I persuaded her, with some argument, to give me some catheters but my advice to paruresis people in the same situation do not pee in the bottle even if you can. John GG
I usually advise to ask the medics what you are supposed to do when trapped in a situation that causes lock up: go to A&E? But what if on a plane?. Basically to ask a question that cannot be answered except by the use of a catheter. For people who do not understand paruresis, it does require a shock tactic like that.
The second piece of advice is to get from me a copy of an article from the Professional Nurse magazine written by a team of continence nurses who investigated self-management of urinary problems with caths; They came out in favour of it.