Great reply to the original post, very good to hear and it will encourage others I'm sure!

Hey!

30 years old here with Paruresis and luckily getting on top of it early on despite it still feeling like I’ve left it far too late!

Luckily I’ve never ended up in A&E but I’ve felt close to calling for an ambulance before. I’ve needed to pee so bad before I’ve turned delirious and gotten a fever, but luckily always managed to get home or to a safe toilet and relieved myself before it became a hospital situation.

I’ve recently started intermittent catheterisation after getting an appointment with my urologist. It’s currently really hard with the NHS to get to a urologist so I paid for a private GP to refer me (£100) and then a private urologist appointment (£120) who then referred me to an NHS urology nurse who teaches self-catheterisation. I’ve skipped the queue essentially, a sad but necessary step but essential considering my usual GP looked at me like I was talking in tongues when I explained Paruresis to him. His genuine response was “you’ll go eventually unless you have a physiological problem” to which end he said I’d have to see a urologist to find the blockage and I’d have to wait 8 months for that.

Anyway, I’m a month into self-cathing and I’m so relieved I’ve learnt it. The nurse was amazing, she literally just explained how two types worked and asked if I wanted to try with her or go home and try - I went home. She gave me 7 of each catheter type in the smallest size and asked me to report back on which I preferred.

I now have a preferred one and got a box of 30 4 days after my nurse appointment. In that time I’ve had to use a train, plane and go on a safari - all times where I’d be panicking about toilets. I’ve had absolutely no issue and my life is now enjoyable. It takes me around 4 minutes from entering the toilets to leaving the toilets, and I leave with an empty bladder no matter how bad my Paruresis is.

The first time I tried it didn’t hurt, it just felt weird. I was in control so I went very slowly. It was a bit squeamish as it’s unnatural but now a month later it’s literally nothing. I can’t even feel it once I start inserting, they’re so well engineered and I hear so much more pleasant than the foley type you’d have had in A&E.

My life is now mine again. I’m now invincible. I highly recommend following in my footsteps if you feel there is no other way to freedom!

Good luck!

HI Richard

Glad you found us at last! To take your points in turn.

I am sorry that the catherisaiton in hospital was painful: it should not be. I have had an endoscope into my bladder, and have experienced self-catheterisation once. Neither was painful; at worse slightly uncomfortable. The guys who use self-catheterisation report that it is a non-event for them and very useful. So you were very unfortunate to have been in the hands of someone lacking training.

As for urologists not knowing about shy bladder: that is because they are focussed on the physical side of things. Their training does not include anything psychological. It means a patient needs to go armed with appropriate information, such as a print-out of our website. Because they will think it is an internet thing, point out that we have had an article in the British Medical Journal, several grants from the National Lottery Fund, and our Honorary Advisors include a Clinical Psychologist and an ex-A&E consultant.

So do book on to one of our workshops, whether the one-day online ones or the weekend hotel based ones. That will get you started on the road to recovery.

As for public awareness, that is an ongoing task. We have been on the Richard & Judy show back in 2003, various radio programs, the Sun's Agony Aunt, articles in the BMJ, the Daily Telegraph, the Professional Nurse magazine, among others, and we have just been asked by a TV production company to get involved with them.

Cheers

Andrew

Following a night out celebrating the Queens Jubilee I ended up being catheterised in A&E today. It was an excrutiatingly painful experience and one which I now believe has resulted from a lifetime of hiding my Paruresis. Until now I didn't even know this had a proper name but a search for information about my catheter, urethra and bladder thankfully led me to UKPT's site. What a relief to find I'm not alone and a big thanks to UKPT for setting this informative website.

I'm two years short of 70 and have had difficulty using public toilets for as long as I can remember, it may have started at primary school. Apart from telling my partner I've pretty much kept my weird secret to myself until today, thinking that I was odd. Drinking last night meant using public toilets and that was the problem which again led to retention and the eventual lock-up of my bladder. The consequences of avoiding peeing until desperate have previously caused me some serious health issues in the waterworks department and I've even been in the hands of urology professionals who appear unaware of this social anxiety, when asking me to provide a urine sample in front of them. I've always tried to avoid that situation and not known how to broach it.

I'm now looking forward to doing something about this by following the advice on this site. I'd also feel the work of UKPT could do with greater awareness raising; a search on the NHS site for my newly discovered condition yielded this (see attached).