Hello, Any Advice?

Hi, Firstly let me thank you for providing this forum and site. It is full of great people from the posts I have read.
Ok, so I have had Paruresis for around 30 years. It started, as far as I'm aware in my teens when I was going to a concert with some friends. I stayed at a friends house and found that when I went to the toilet in the morning that I was unable to go. initially I thought 'hmm, that's weird' but thought not much about it. when i went back to the toilet again it still didn't work. What followed was a long day of pain, going back and forth to toilets and not being able to go whilst having a full bladder. I didn't go until i arrived home in the early hours of the next morning.
fast forward 30 odd years and I'm still dealing with this on a daily basis. I have had to restructure my whole life around this problem. I have lost out on numerous opportunities that I have not been able to take because of this thing. I only go to places that I know i'm not too far from getting relief if i need it. I have certain spots marked out where i know I can go if I get in trouble, which is often.
I have found that in the last year this has gotten worse, I sometimes am not even able to go at home by myself. I find it very hard to concentrate on getting my mind to a place where i can go. Going out has become a nightmare as this is always in my mind now and I am getting anxiety attacks and stress from the experience. With the recent coronavirus restrictions and such I have felt way worse because if you go out somewhere you are kind of stuck in one place, not so easy just to slip away.
I recently started a new relationship which I feel has been affected badly by this. She is very supportive of my problem but It isn't getting any better. Staying at her house is just a long night of bladder pain and stress. I want us to be able to have a good life together but this is now in the forefront of my mind constantly. I just want to feel normal.
Anyway, sorry for rambling, there are too many experiences to share them in one post. I was wanting to know if anyone has had any success with any treatment or medication? I went the route of a doctor a while ago and had a very bad experience with them dismissing my problem and saying that because I've never been formally diagnosed then I don't actually have the problem. I just feel I'm doing some real damage to myself when i am not going for 12 plus hours, nevermind the mental stress of it. Any advice would be great, Thank you.

#1371 by chris

Hi Chris

You ask about treatment and/or medication. If you look on our website, you will see that the treatment recommended by clinical psychologists is CBT (Cognitive Behaviour Therapy). CBT is the basis of the therapeutic workshops we run. If you search on the term "feedback" in the posting titles, you will find postings from those who have participated. You will find them encouraging.
Before Covid struck, we ran weekend workshops in hotels. Now with Covid restrictions in place, we cannot do that, and instead are running one day Zoom sessions. Look on the Workshop page and you will see the next one is on Saturday 16 June. That is also where you can book on.

The second thing to do is to tell the GP that you are getting uncontrollable urinary retention. This is taken seriously by medics and should get his attention. Don't mention the social paruresis aspect yet as that will distract from the aim; which is to be prescribed ISC (Intermittent Self-Catheterisation). Being able to go into a toilet, use a catheter to empty your bladder and then throw the catheter away, means you are bomb-proof: you know you will always be able to relieve yourself. With the removal of the anxiety caused by being unable to pee, you will be in better place to get on with life and to do something about your paruresis.
How does this all sound?
Andrew

#1372 by andrew

Hi Andrew, Thank you for the reply. I am looking at the different aspects of clinical treatment as I want to try and get on top of this. You mention Intermittent Self-Catheterisation. Something that I could have like that would be definitely a game changer in having certain freedoms back. I am however a bit nervous of using a Catheter as I have never done that before and am really not sure what to expect. I feel sick just thinking about it to be honest. I watched a video online of someone doing it and it kind of frightens me. Is it painful or unpleasant to perform?

Thanks

#1373 by chris

Hi Chris

Absolutely not painful or unpleasant. After a decade of advising guys like you to have a catheter in your "back pocket", I decided that I should experience it for myself. So I got a user to supervise me. It felt a bit odd which is not surprising, but was surprisingly easy and straightforward. A bit tickly perhaps but that was all. Remember that it is very flexible and is lubricated, so it slides very easily.

Andrew

#1374 by andrew

Just a bit of a heads-up on what's going on with me.

So yesterday I had a really bad day for this. It was coming off the back of a number of bad days. I ended up in hospital this morning. I was unable to go myself and it was over 24/5 hours of trying. I went to A&E and they ran some tests and put a catheter in. It's still in now actually and will be until weds. I have an appointment with my doctor and the urologist that I spoke to said he has seen this before in various forms. He recommended that I start CBT next week.

It's been a very painful and tiring couple of days but I hope maybe I am on the right track. At least I have started to make inroads towards some kind of treatment.

#1389 by chris

Hi Chris

Sorry you have had to go through all that. But as you say, you are on track now for getting treatment. Do keep posting to this forum to let us know how things are going; that way we can give you moral support.
Best
Andrew

#1392 by andrew
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