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given myself a deadline...

Posted by Loz on 8/3/2008, 12:47 pm

Hi,

I've posted on the board before, briefly, but haven't visited for a while.
I'm nearly 21 and I've suffered problems since I was about 14. Maybe even longer to be honest - I don't know what caused it, but even as a child I was never one of these kids who could just pee anywhere! I used to be pleased with my bladder control - now it's the biggest burden ever, as I'm sure you know!
I'm lucky in that I don't suffer with this as much as others - when I was 14 I went through a very brief period of only being able to pee in a bathroom in a house, even then with limits (my ex boyfriend had no locks on any toilet doors in his house). However, I overcame this quickly, I don't know how, and I now have no problem in most - but not all - public toilets.
My problem arises when it comes to toilets on planes, trains and the portaloos that you get at concert venues. Being 21 and a music lover who enjoys holidays, this is very frustrating. I don't see why I should rule out these activities just because of this condition. It really upsets me.
but now I've decided not to. I've booked camping tickets for the V festival this year (the cleanest festival with the most toilets!) and my friend has asked me to go travelling with her next year. This gives me til August to "cure" myself with portaloos and a year with aeroplanes - which is by far the worst problem - where it all started when I was 14.
I don't know how my attitude will come across - I know there is no "cure" and there's no way that it's a "mind over matter" issue - I'm sure anyone who's shared this problem with a person with a lack of understanding has been told that and become very angry - i know I have! I've heard that hypnotherapy is recommended, and if i don't feel that it's any beter by august I'll have to consider self catherisation at these times. It's the fear that gets me tho - like I'm scared to even go into one of these toilets because I know I'll have this problem. So therefore it takes over and dominates my thoughts, making excitement for a holiday, for example, far less exciting.
If anyone could offer advice or suggestions, I'd be really grateful. It's already a comfort to know I'm not alone

Loz

Re: given myself a deadline...

Posted by Andrew on 9/3/2008, 1:53 pm, in reply to "given myself a deadline..."

Hi Loz

Suggestions

Like I have suggested to others who are mildly affected. Get used to being in a train toilet or a portaloo when you do not need to pee. At present your anxiety about being in such a place is compounded by your anxiety about having to pee, or else!. You would find it beneficial to disassociate these two anxiety triggers. How to do it? Go on a return train jouney: you can walk alomng the train using each toilet in turn, just to sit there and to work out whayt is bothering you, then how to manage that. You can find one of the public free-standing pay toilets (the sliding door efforts) and do the same.

Get sorted with catheters now, and try them out. Finding our that you can be in total control can make for a significant shift in your perception of the problem; it coudl remove it altogether cos you will know you have a fail-safe backup.

Come on a workshop: we cannot provide plane, train or portaloos, but the tools we give you can help a lot.

cheers

Andrew

Re: given myself a deadline...

Posted by Loz on 11/3/2008, 4:53 pm, in reply to "given myself a deadline..."

Thank you so much for your reply, Andrew.

I realised that my post was almost identical to one I'd posted before under a diff name...only a lot more positive this time! And that's definitely worked in my favour...

Went to the doctors this afternoon, armed with some of the main page that I'd printed, plus Andrew's reply so she could see that I was only asking to learn self catheterisation as means to reduce the anxiety. She looked puzzled, I thought at first I was going to get a disappointing response, but instead she was puzzled because she was trying to think of somewhere she could send me to learn - she felt the nurses at the doctors surgery wouldn't be experienced enough to show me and she didn't want me to be put off in any way. FINALLY, a good response! Unlike my doctor when I was 15 who told me the only thing she could give me was diazepan. So, she said she'd do her homework and would hopefully refer me to a nurse led urology clinic. I'm soo pleased that I spoke to her and got the answers I needed to hear!

I am also taking a 2 hour train journey on thursday so that will be the perfect time to begin my attempts to reduce anxiety levels. After my visit to the doctors, I'm in even more of a positive frame of mind, so right now I'll do anything!

I'll also keep my eyes open for a beginners workshop I could attend. This will not beat me!

Thank you again for your response, andrew, it made me feel so much more confident going into the doctors today - I knew the response I wanted from her and why I wanted it and I think that definitely helped!

Loz

Re: given myself a deadline...

Posted by Andrew on 11/3/2008, 7:22 pm, in reply to "Re: given myself a deadline..."

Hi Loz

Excellent news!

And give me some feedback on how the practice on the train goes; either here or by email. We may have to build on your experiences.

cheers

Andrew

Re: given myself a deadline...

Posted by Loz on 10/4/2008, 9:39 am, in reply to "Re: given myself a deadline..."

Well, my train experience was ok...no luck but I at least tried to familiarise myself with the toilet set up, etc - when u have to press a button to open the door, lock the door, etc, it's a bit unnerving as I'm convinced I'll be interrupted! But I'll keep trying.

I received my letter to call and make and appointment at a urology clinic and I'm waiting for the appointment to come through. This has actually made me more nervous to be honest - I thought the hard part was over having spoken to my doctor and I was so relieved at the thought of someone being willing to help - but what if I get to the urology clinic and they aren't as sympathetic? What if they won't teach me to self catheterize? Really don't want another setback

Re: given myself a deadline...

Posted by Andrew on 10/4/2008, 9:40 pm, in reply to "Re: given myself a deadline..."

HI Loz

Well done for trying out the train toilets; you did not mention how many times you did that: I hope it was several times. "It was OK"; well it was always going to be stressful, otherwise you would not have a problem with them. Try a train again, and this time it will be a bit less stressful.

As for the locks: the fact that you have to press a button to lock it - i.e. it is in your control - puts you in charge. No-one can interrupt you; if they are in a hurry, they will just walk along to the next one.

As for the urologist: it is a good idea in life to expect the worst and to hope for the best: that way you cannot be taken by surprise. In your case the worst is if the urologist will not show you how to catheterise; in which case you go bakc to the GP to get referred to a different urologist; we have to remember they are there for our benefit, not the other way around! Tho it does not always feel like it. Emphasise that you get urinary retention which, on a flight, is dangerous; emphasise that experience shows you that peeing does not happen when you get full, instead you get great pain. The standard assertive technique it to not be distracted, but to repeat word for word your original request or statement.

good luck

Andrew

Re: given myself a deadline...

Posted by Loz on 16/4/2008, 3:40 pm, in reply to "Re: given myself a deadline..."

Well, my appointment came through for tomorrow, for once the NHS are being useful. I'm being sent to see a consultant...apprehensive about the fact that it's a man but I guess that's a hang up all women have with any kind of sensitive problem.

I know I'm putting up my own hurdles, I'm definitely expecting the worst. I'm just dreading the response I had from doctors when I was 15 and in hospital "I just cannot give you a urine sample" "Well, you'll just have to try". I was in agony after about 10 glasses of water, what did they think I was doing, going to the toilet and brushing my hair?! I just have to remember all the good advice I've been given on here - I'm really grateful, thank you

Loz

Re: given myself a deadline...

Posted by Andrew on 16/4/2008, 4:00 pm, in reply to "Re: given myself a deadline..."

Hi Loz

Well one difference is that now you are an adult, and you can stand up for yourself: an assertive approach is always useful

good luck

Andrew

Fantastic response - at last!!

Posted by Loz on 17/4/2008, 8:11 pm, in reply to "given myself a deadline..."

Well....all my anxiety over the appointment this evening was, I'm so pleased to say, unnecessary grinning from ear to ear now!

The urologist said the term "paruresis" (which my Dr had used in referral letter) had stumped him and just as I was about to get on a roll and try to explain, he basically told me what the condition was - he'd done his research! I mentioned the site and I thought he was a bit dismissive at first but this was because he was concerned that I had "self diagnosed" myself with a behavioural/psychological condition when in fact I had a physical one, but after I assured him that this was not the case, and there were no correlations with my menstrual cycle, etc., he was confident in what I was saying.

And so...he had no problem with referring me to the senior sister who will teach me to self catheterise!! I'm sooo relieved and happy! finally after 7 years I'm going to get the "normal young person's life" that I've longed for for so, so long!

I know this isn't the only solution and I will definitely keep watch on this site for a beginners workshop that I can attend.

I was also brave enough to confide in one of my friends (i carefully selected which one!) and she was so understanding and even came to the hospital with me this evening, which was a huge help as I had a long wait and probably would have talked myself out of the waiting room!

I'm just overwhelmed that I've had this response...and hopefully this will help others too - there are doctors who understand!!

I'll update when my future appointment comes through, I'll probably be on here reading previous posts from females using catheters. I just hope my story can help at least one other person the way everyone's stories here have helped me!

Loz

Re: Fantastic response - at last!!

Posted by Colin on 18/4/2008, 7:42 pm, in reply to "Fantastic response - at last!!"

Hi Loz
What a result for all your hard work! We AP's know just how hard it is to tell someone - anyone! Whether professional or friend/relative. So well done to you for sticking with it. As Andrew says, you are an adult now, and can insist on your right to treatment. I can recommend a UKPT workshop when you can find the time. But until then you seem to have a great plan. Just remember it will be worth persevering. Good Luck Colin

Learned to self cath today...

Posted by Loz on 14/5/2008, 10:56 am, in reply to "given myself a deadline..."

Well, I had my appointment this morning to learn to self cath. Unlike my visit to the consultant, I wasn't nervous at all. I knew that I was doing this because it was going to help me and I went in with the mindset that I was going to get what I wanted.

The nurse was fantastic, really understanding and explained that she'd seen various degrees of the condition more often that I expected - she said often she has met women who have problems peeing on aeroplanes because of a problem with cystitis that can occur, so that was interesting to know (not that this could be my problem as this isn't the only time I suffer).

I'd read before that people were shown on a model and then sent away with caths so I was surprised when the nurse actually showed me what to do myself with a mirror, but I just went with it and was successful first try! She was actually really surprised at how easy I'd found it (not implying that it's difficult). She said it was likely to be because I was so relaxed - often women are tense and panic if they struggle. So the best advice I can give to women using caths for the first time is don't panic! Take your time and you'll be fine - it's not impossible!

Also, something else I could advise is to know your anatomy. Have a look with a mirror - weird as this may sound, if you know what you're looking for before your first appointment it will make things easier.

I know this isn't the answer to everything and I would be very interested in attending a London workshop next time one is held. But, for now, I'm happy!

Loz

success at last

Posted by Loz on 31/5/2008, 3:29 pm, in reply to "Learned to self cath today..."

I cannot sing the praises of this site enough. Without it, and the people and the brilliant advice I've been given, I wouldn't have, for the first time in my life, had a night in the kind of environment I had last night, without this condition making me unhappy and running my life.

I had my uni summer ball, which I knew was to involve lots of wine, lots of dancing in a field from 10pm til 6am....and portaloos. But I was in control now because I'd been taught how to use caths. So rather than do what I'd normally do, avoid liquid all day, waste loads of money pretending to be drinking when I was drinking 1/4 glass and subtly tipping the rest away so people wouldn't query. Instead, my mindset was that I forgot. I had my cups of tea all day as I normally would, I accepted the glass of wine when I was getting ready and went, with caths, to the ball.

Ideally I would have visited the toilets before I really needed to to get used to it, but as the situation was, the first opportunity I got the chance to I actually needed to pee. Going into the portaloo, I knew there was no pressure and when I wasn't able to pee it wasn't a problem, I used a cath. And it felt so liberating to be able to leave that loo having voided, knowing that I was no longer the "freak" who was visiting the loo but not going.

Then...well as far as I'm concerned, miracles happened. I went to the loo twice when a friend did but I didn't really feel like I needed to go...and peed both times without the help of a cath. In a portaloo, probably for the first time ever in my life, certainly the first time I can remember.

I feel like I've got my life back. Or at any rate, my youth back. The chance to do everything I want to while I'm young

So thank you so much for the help and advice. Thank you so, so, so much

Loz

Re: success at last

Posted by Andrew on 31/5/2008, 5:13 pm, in reply to "success at last"

Hi Loz

What a happy ending :-)

You now see what a difference it makes to take away two anxieties:

1. the anxiety caused by the fear of how you would manage because you would not be able to pee; this anxiety was removed by the presence of a catheter

2. the anxiety caused by the need to have a pee; this was removed by your not needing one, so to your surprise, the body drained off of it own accord.

Perhaps you can use this approach to gradually desensitise yourself to portaloos, trains and planes.

I'll be in touch by email next week.

cheers

Andrew

Re: success at last

Posted by isaac on 24/6/2012, 9:48 pm, in reply to "Re: success at last"

Great stuff.

very inspirational

However, i wonder if it can be as easy for a male to self cath.

Re: success at last

Posted by Mark L on 25/6/2012, 8:40 pm, in reply to "Re: success at last"

Isaac - the physical process maybe isnt as quick as a female's, but its still quick and easy in its self.

Mark

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