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To all sufferers, please read this and can you help? I was first drawn to the attention of this problem on the TV programme 'Embarrasing Bodies' and didn't realise the condition exsisted and thought it was just me. From there I found your site which shows how extensive the problem is. Compared to some my problem is very minor, it started on a plane journey, I was in the queue for the loo and as my turn arrived the pilot asked everyone to return to their seats as there was turbulance ahead so I didn't use the loo and returned to my seat. Since then only on planes do I have a problem and just can't urinate. On reading your site I came across an item posted by Tonto about a new catheter which you can carry around and if you get into trouble its easy to use, he ordered a pack and 5 arrived within a week and he found them absolutley excellent, so I thought brilliant this is the answer to my problem. I rang the complany Coloplast.co.uk for my free sample only to be told I needed a letter or authorisation from my doctor. I wasn't even sure my doctor knew about the condition he seemed unable to make a decision and referred me to 'the bowel and bladder specialist' she gave me a booklet on this catheter but she was reluctant to contact the company on my behalf to say ok, which I thought was ridiculous as the whole procedure is not rocket science and that was the whole idea of the catheter. She then agreed to ring her senior and he thought I needed counselling, by this time I got the feeling that nobody wants to make a decision. Seeing that I was getting frustrated she decided to refer me to a Urologist at the hospital where I had to do a flow test and have a full rectal examination, by this time I wish I had never bothered. He now has reported back to the Bowel & Bladder specialist who have given the results to my doctor and suggest I need to be taught self catheterisation and for this want to refer me back to a urologist, which I find unbelieveable. The whole purpose of the catheter is that it is easy to use, the video shows people saying how easy and wonderful it is. Every referral has taken weeks and now months down the line I am no nearer getting the catheter. It is an embarrasing problem as we all know and the stress it has caused is unbelieveable, it appears the NHS is unable to make a decision and no one wants to take responsibility. My last correspondance was on the 31st August and I have heard nothing since. I would like to know has anyone else been able to obtain the catheters and if so how they have managed to do it. KEITH
I was worried about my stag night and honeymoon to the US, so I went down this route. Andrew gave me some advice on a workshop I attended.
I went to see my GP first, who hadnt heard of the problem. I explained it to him, and told him about the UKPT. He agreed that it was a good idea, and reffered me to the urology department at the hospital (my appointment took a few weeks I think).
I had to provide a urine sample when I arrived (I said that may be difficult!!) and was told to just 'try'. I managed, then had a chat with the urologist who also had never heard of Paruresis. I explained the same to him. He also agreed that a self cath was the way forward.
A few weeks later, I had an appointment with a practice nurse back at the hospital, who took me to the loo and showed me how to self cath there and then. She gave me about 5 for free to take home.
I have to say that they have been an absolute life saver. You can carry couple in each pocket easily, and use them when ever/where ever. Knowing you have a 100% garunteed means of going often reduces the anxiety enough as to not actually need them!
When I ran out, I went back to the GP to ask for some more. He wanted to know which ones I had but I couldnt remember, so contacted the hospital but again they wernt sure. I was advised which would be best, and got a box of about 50 on perscription.
Iv used them loads, and never had any trouble or infections afterwards. The only negative is there is moderate discomfort when its being inserted/taken out, but a small price to pay and you do get used to it.
If at any point, the GP, urologist or nurse express signs of doubt or refusal, simply ask them: When im 1000's of feet in the air on a plane and unable to urinate naturally, what am I supposed to do?!
Remember its YOUR choice, and your right. You just need to make them aware of the seriousness of this problem and insist that you obtain catheters.
There are other sited where I beleive people from here have used to gain free samples, but couldnt tell you where so keep searching. If you have no luck and are desperate, hell I sent you some of mine!!
Mark thank you very much for your response and advice it's nice to know I'm not the only one having all this hassle, I'm determined to get them but I fail to understand why it is all such a problem when the catheter company supply a booklet which is very easy to follow and understand. After all this I've still had no reply from anyone but I shall keep on persuing it. Thanks once again Keith
