Looking for some help please

Hi,
I have visited the very informative UKPT website on a few occasions previously; unfortunately I have not managed to build up enough courage to make contact until now.
I am 43 years of age and I have been living with the problems of not being able to urinate in public places since childhood; my earliest memories are from my first days at school, being made to line up to go for a pee and nothing happening. The situation has resulted in me not joining in certain activities or interests for fear of getting caught out and resulting in being doubled up in pain and highly stressed. I find that I cannot use urinals at all and I have to be bursting to use a cubicle and that is not always a definite result and can end up walking unhappily out of the toilets, the same applies to trains and aeroplanes, with me having to plan my trip very carefully trying to go to a disabled toilet immediately before the journey.
The issue with not being able to pee has been made worse after having a road traffic accident about four years ago, which resulted in groin injuries and the need for lots of urine tests and multiple surgeries; the worst situation arising last July, after surgery, when I was pressured by the nursing staff to go for a pee before being released from Hospital, I could not go for a pee and this resulted in me having a catheter fitted, after this I was then made to drink lots of water and go for a pee again without the catheter fitted (Which as you can guess was not happening), this just resulted in more pain and discomfort.
I am now in a better situation health wise and I would like to take up professional sailing as a career change, but guess what's stopping me... I cannot risk being in a situation on a small sailing boat and need to go for a pee with other people in such close proximity who might be able to see, hear or wonder why I am spending such a long time in the toilet.
Any help and advice would be very much appreciated.

Best wishes,
Christian

#438 by goldenhill2000

Hi, I can relate to a lot of your experiences. The single most important thing to realise is you will never conquer your fears if you don't face them and make sacrifices. I desense as often as I can and it does work.
Confide in someone you trust or find a pee buddy (I used to have one until he decided he was cured!) . It can be such a lonely condition as it is. Talking really helps.
Consider going on a workshop - a very uplifting and useful experience.
I've also taken up yoga and meditation which helps. One last thing, I've just read The Secret Social Phobia by Steven Soifer, which has so much useful info, hints and tips. Wish I'd read it years ago.
All the best.

#439 by SHughs
The following user(s) said Thank You: goldenhill2000

Hi Christian

I can totally relate to your experiences, including the difficulty in getting in touch, so I am really glad you have done so at last.

One of the things SHughs recommended was coming to one of our workshops because he found it uplifting and useful. That will totally turn you round and move you forward. Unfortunately the lockdown meant we had to cancel upcoming workshops until the situation resolves.

What you can do with respect to sailing is to use disposable catheters. When you need to pee, you slide one in, which lets your bladder empty, slide it out and dispose of it. This is totally different to hospital catheters: they are lubricated, sterile, discreet, and are comfortable to use. Their main users are people with injuries, or hemiplegic, so are a “normal” utility.

You will need to see your GP, and overcome their ignorance of the condition. They can prescribe catheters on the NHS. The best way is to describe how the body locks up despite your wish to pee, and that letting the bladder fill up does not help but instead makes it worse.

Some GPs can be awkward about catheters. The two points that may be raised are:
1. "That is not the solution". To this you have to be gently assertive by replying: "so when I get urinary retention say on plane or a boat, what am I supposed to do?". Obviously there is no answer to this.
2. Some GPs say that infection is a problem: while correct for in-dwelling catheters in hospitals, the men we know of who use catheters say that infection is rare. (NB for obvious reasons it is more common in female users)

Take some evidence with you: on our website under Professional, General practitioners, are several professional articles. You could print them off and take them with you. Mention also the existence of the UKPT, a registered charity, that has clinical psychologists are advisors.
You can also email me on the support address and I can post you our glossy brochure to give them.

Now about desensing. You say you struggle in cubicles, which is very common. The trick is to start not with trying to pee, but with an empty bladder. Go in the cubicle and go through the motions: unzip, get it out, stand there, and read your reactions. Just hang in there so long as your anxiety does not ramp up, and then leave. Reflect on your feelings and fears. Examine them, was there any evidence to support your fear? Now repeat the exercise, as often as needed for you to get comfortable with being in a cubicle. Only then consider drinking enough to cause you to need a pee, and go for it. This is best done in a large anonymous facility like a shopping mall or a motorway services.

That’s enough for now. Have a think and get back to me with comments.

Cheers

Andrew

#440 by andrew
The following user(s) said Thank You: goldenhill2000

Hi, Thank you for your message. It is good to make contact with people who have experienced or who are experiencing the same situations and as you mentioned it is a very lonely condition live with.
I will read up more on desensing as from what I have read, it is the way to go in terms of conquering the fears.
I will look up the book The Secret Social Phobia by Steven Soifer as well.
All the best.

#441 by goldenhill2000

Hi would you like to try together?

#446 by Cane

I'd be happy to meet up with one or both of you when lockdown restrictions have been eased a bit, preferably in London or to the North of London.

#447 by SHughs
The following user(s) said Thank You: goldenhill2000
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