U.K. PARURESIS TRUST

UK paruresis trust

This Discussion Board is for men who find it difficult or impossible to urinate in a public or social situation. Women should use the women's Board.
The Board is maintained and moderated by the U.K. Paruresis Trust. Registered Charity no: 1109541.For further information, visit our website, or contact us at

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life of hell

Posted by peter on 1/4/2008, 3:15 pm

had paruresis for 15 years but my freinds dont belive me , this condition has made my life hell.

Re: life of hell

Posted by Steve M on 1/4/2008, 6:08 pm, in reply to "life of hell"

Well you have come to the right place. You are most definitely amongst friends so please feel free to write about your experiences, read the information on this website and get yourself on the next course.

I've had it for 35 years and I can promise you that there is a way out of this

Re: life of hell

Posted by mike w on 1/4/2008, 9:41 pm, in reply to "Re: life of hell"

yep - what Steve M says basically, welcome to this site, you're not alone. Hadn't actually added up how many years I'd had it for before - but its got to be high 20's.

Re: life of hell

Posted by Andrew on 1/4/2008, 9:51 pm, in reply to "life of hell"

Hi Peter

Its shit isn't it when your friends dont believe you and so dont help; and possibly tease you.

Here you will not be judged, because we have it ourselves in varying degrees and so understand where you are.

It really does help to get it all off your chest to guys who understand. Tell your story, where you can and cant go, how it affects your life ete etc. You are totally safe here.

Then we can suggest ways to improve things.

cheers

Andrew

Re: life of hell

Posted by peter on 2/4/2008, 3:26 pm, in reply to "Re: life of hell"

thanks i have had this since i was 19, iam now 34. paruresis started after a nervous breakdown in 1993,ever since then i am not able to go at my parents house ,sisters and brothers house, friends houses or out with other people and if friend come to my flat. i have not worked since feb 1996 due to depression and paruresis. i can have a full bladder and still not be able to go,i feel that i have no control of my feelings,my heart beats fast ,i sweat, noise seems closer and everything feels like its coming towards meand i feel sick.my doctor put me on amitripeline which does help me sleep. i can go if i am on my own at home.i feel drained with this problem.

Re: life of hell

Posted by Andrew on 2/4/2008, 5:02 pm, in reply to "Re: life of hell"

Hi Peter

I can well understand how difficult life must be for you. Can you go to your GP and ask to be shown how to self-catheterise? That will give you the ability to empty your bladder whatever toilet (i.e. cubicle or a house) that you are in. It would at least give you a breathing space, and a chance to reduce the constant anxiety in your life. Then you could look at doing something about improving your condition.

This would be to:

either go to your GP and ask to be referred to a clinical psychologist for CBT (Cognitive Behaviour Therapy): if you email me direct with your address, I can send you the UKPT brochure, which explains about paruresis - you can show it to the GP.

and/or book onto one of our workshops. We can look after you very gently and supportively. Again email me to let me know where you live (this is all in confidence) and we can discuss how to arrange this.

The main thing is that you are not alone with this now. We can work together OK?

Get back soon, or now?

Andrew
Chairman UKPT

Re: life of hell

Posted by Andrew on 2/4/2008, 5:05 pm, in reply to "Re: life of hell"

Hi Peter

I forgot to m,entipon, you would not be the first person we have helped whose paruresis is as severe as this. The two I am thinking about can now manage cubicles most of the time.

cheers

Andrew

Re: life of hell

Posted by Claire on 3/4/2008, 12:24 pm, in reply to "Re: life of hell"

Hi Peter,

I can't quite remember when I started with paruresis and I don't know what (if anything) triggered it. My earliest memeories are from late primary school and now I'm 28. My case was pretty severe, to name but a few examples: I went over 48hours not being able to pee when I stayed at a collegue's house, a full day when I attended the good food show and another full day when myself and my parents went over to Dublin on the seacat (when I really thought I was going to end up hospitalised) - my parents waited outside some public loos for over two hours and I cried when I fanally managed to go! A 'Life of hell' is just what it had become for me.

For years my parents got frustrated with me as I 'couldn't pee' and they didn't understand why. I went to the doctors and was told to try 'relaxation tapes'. I avoided sleeping over anywhere and sometimes had difficulty going at home on my own, never mind anywhere else or at my parents, I was constantly making excuses and my bladder was ruling my life.

It was my dad driving home one night who heard about paruresis on the radio (I must have been about 25 by then still not knowing what was wrong with me). It was such a relief to know I wasn't the only one out there and that my condition even had a name!

I sent Andrew an email and then got myself booked on a beginners workshop. It was great to meet people in the same situation, who understood what i was going through. The workshop helped me a great deal and since then I've found the man of my dreams (and despite dreading telling him about paruresis when we started dating he's always bene really good about it - in our early days of living together he would let me send him out of my flat in the middle of the night so I could go). We got married last Summer and bought a house together and now I have no problems when he's around. I thought that would never happen.

I've recently been on the improvers workshop as well. I can't say I'm completely 'cured' but my confidence has increased enormously and my condition is now much more manageable - I'm even going in public toilets now and I'm not afriad to go and 'try' anymore.

The workshops are hugely beneficial and I can't recommend them enough - they can change your life completely.

You don't have to carry on living like this; you can do something about it.

Claire

Re: life of hell

Posted by Pete on 2/4/2008, 12:37 pm, in reply to "life of hell"

Hi Peter (You have my name and condition!),

Read my posting: "Release at last" 8/2/2008 - it may encourage you. I sincerely hope so, and getting in touch with this board is the first step.

Good luck,

Pete.

Re: life of hell

Posted by james s on 3/4/2008, 9:26 pm, in reply to "life of hell"

peter,

just by leaving a message on the board, you’ve made a huge step.

I am in my early 30s and have suffered with this for about the past 20 years. I found it incredibly hard to talk about to friends and family and felt so embarrassed. I avoided almost all scenarios that would lead me to have to use toilets other than the one in my house and I sometimes found it difficult to use that, too.

around 18 months ago, my wife heard the radio 4 program on the internet (there’s a link on the ukpt website) and my life slowly began to change. I attended a workshop which was really the impetus for everything that has happened since. being around a group of people who understand exactly what you are going through gives such a feeling of freedom and hope. the support offered by the course leaders is amazing.

one of the difficulties I had in talking to friends about it was that I just didn’t have the vocabulary to explain it to them in a clear way. I would be tense and nervous and hurried and panicked. going to the workshops can help to empower you in all sorts of unexpected ways such as giving you the means to express yourself.

I can now use cubicles in public toilets – which is a world better than I ever thought would be the case - and I am not done improving yet. all steps are small but they soon mount up.

the workshops are brilliant and I can’t recommend them highly enough.

knowing about the website, attending workshops (and so understanding what you are going to through) can make such a difference to your life.

all the best,

james s

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