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I have been dipping into this site on and off for a few months now and have been surprised at the reassurance it has provided me. There really are other people with this issue. I have lived with this for over forty years and like others here it has affected my ability to be spontaneous and caused me to avoid otherwise fun situations. I am totally unable to use a urinal (screened or otherwise) if anyone else is there or I think someone might come in. I can use cubicals at times but not if I think people are waiting for me to leave or they are somehow too close to others (eg. only one of two cubicals together for instance). I had a course of systematic desensitization as a teenager but I have to say it had little effect. I have subsequently just had to accept this condition and cope. Recently however it has taken a turn and for some reason I now find that I can't use the toilets on planes. Trains have also become difficult for me. I have not had this problem with planes before and like to travel, it is one of my pleasures. Now the prospect of a long flight fills me with fear as to what might happen as there is now getting off to find another toilet. Somehow it doesn't feel private enough in that plasticy cubical and other people including cabin crew are often outside. I recently managed two 7 hour legs of a long haul flight without any success at using the toilets and experienced some discomfort. I have, in other situations in the past, ended up in quite severe pain after having not passed urine for long periods or with a full bladder from a few beers. I am not wanting this to prvent me flying and would welcome your thoughts and ideas about this. I have read the other posts referring to this on the forum but wondered if there was anything else I could do. I definately dont want to go down the self catheterization route. What I have done is to use the airport toilets (usually I can as they are 'impersonal') as close as possible before boarding and then refuse liquids apart from wetting my lips. Its not ideal but as I say I've just about coped with 7 hours. I am now wondering what would happen on a flight, particularly if it was longer, and I wanted to go but just couldn't. Would the pain become unbearable and is there a medical risk of a burst bladder or damaged kidney or something. I have been in situations of pain when it seemed even less likely that I could pass water. Is there any medication that I could take to limit urine production which could help with long flights? Any ideas, information or sharing of experiences would be helpful. Many thanks.
Re: Planes and Trains
Posted by Andrew on 29/10/2008, 10:45 pm, in reply to "Planes and Trains"
Hi Marcus
Glad you got reassurance that there are others like you. I hope you can be reassured that these others have improved, often by attending a workshop.
To briefly pick up on some of your points.
Systematic desensitisation as a teenager did not work: I wonder if this was because there was no cognitive therapy involved. My belief and experience is that desensing can only go so far without dealing cognitively with beliefs and fears. Your therapy also lacked any input from peers; we find that the group has a strongly positive impact on a sufferers: you have only to read the feedback from workshop participants to see this.
Plane cubicles not private: Sufferers behave as if the cubicle walls were transparent. However, the walls being opaque, your stepping into one has the result that you cease to exist for the people outside. The cabin crew are busy, or occupied with their lives, and would certainly find any thought about others in the toilets as boring in the extreme. Now I now it is easy to say this, but again one can get to that state of mind with cognitive therapy. Imagine doing a survey: go down the aircraft interviewing each person in turn; "Excuse me sir/madam, could you tell me your thoughts about the person in that toilet?". They would either look bemused, or would punch you in the face!
Definitely no to self-cathing: well it is not a solution but it is a useful aid. The guys who have one handy in their pocket know that whatever happens, they will be able to drain off. Consequence: lack of anxiety; result, being able to pee without using it. Its a no-brainer really. And it is no more than slightly uncomfortable.
7 hour flight: well I've met guys who have survived 14 hour and 20 hour flights. Very uncomfortable, even in pain, but they survived. As to damage: I have not heard of splitting a bladder and believe that the pain would be so bad before that could happen, that some other way out would occur, even if it meant an emergency landing due to severe abdomnial pain. As for damage of some sort: minor damage cannot be ruled out, but I'm not a specialist.
Medication: desmopressin suppresses production of urine: I believe it is used for bedwetting. Some have used it on flights.
But the way forward is CBT. We use a CBT approach on the workshops and get results. Its never too late; our oldest this year was 85, and is delighted to be flying again.
Thanks Andrew for your reply and your useful comments and information. I'm sure that the CBT and peer input on the workshops has a positive effect and indeed this wasn't present when I had my behavioural therapy. I guess I should think about attending a workshop but I have to say the idea of it fills me with some apprehension.I'm sure this must be a common feeling though. Having this issue with flights must be a common experience amongst people with this condition. Any stories from others with this would be most welcome. Thanks again.
I'm the 85yr-old that Andrew refers to and I'd like to reinforce all he says, particularly about Workshops. If you look back at my first posting on this site ("Release at last" dated 08/02/08, on page 3) you will see how I felt then. I have now been to two Workshops and can tell you that meeting and talking to others in our predicament is in itself a great boost and my life has been revolutionised as far as my age will allow. You are fortunate to have found UKPT - make the most of all it has to offer. There is absolutely nothing to fear or worry about at the Workshops. You will find just friendliness and sympathy.
Just wanted to echo what others have said – the workshops are great. The support you feel when there, speaking to others who know exactly how you feel, is empowering. Everyone, I think, feels nervous about attending for the first time – facing this condition is hard – but I haven’t met anyone who wasn’t glad they’d attended by the end of one. I too found plane toilets very difficult. They didn’t feel anonymous and I felt exposed, nervous and once failed miserably on a 14 hour flight to pee successfully. It was a horrible experience and one which meant I was reluctant to fly long distances for years. I went down the route of drinking small amounts of water, using the airport facilities prior to flights and would end up feeling rough and dehydrated. Following workshops with the ukpt, I was able to use toilets in planes successfully. It is true that no one is focused on who is in the toilet. Recently I was on a long haul flight and was seated near a single toilet in the middle of the plane. I didn’t feel very comfortable using this at first so all I did was stretch my legs, went for a wander down the plane to the back where there were 4 toilets and used one of those. Perfectly reasonable behaviour but one of the pernicious things about this condition is that because you can feel people are noting your every move, simple solutions like this may not occur. I later felt more relaxed and used the single cubicle near my seat. I can’t recommend the workshops highly enough and would never have been able to make such progress without their help.
Marcus, Your story and mine are almost identical! I have been affected by paruresis for about 36 years! Planes became difficult about 10 years ago as a result (I believe) of reduced "flow" as we get older - prostate growth which is perfectly normal. Equally, getting older has made it more difficult to cope with the anxiety of this condition so I decided to try a workshop. It has been very useful and I am about to go on the Manchester follow-up one for part of it. I recently went on a seven hour flight to bermuda and thankfully the plane was part full and there were plenty of toilets. I am not sure but most of the long-haul planes should have three or four toilets at either end pus some in the middle. I think I could cope with this but would be timing my runs to the loo very carefully!! My wife wants to travel (and so do I!) so don't delay getting yourself on a workshop. The best pharmaceuticals are those that relieve the anxiety (in my view) so a short-acting benzodiazepine works well as do certain beta blockers. The anxiety makes you want to pee even more so taking a pill reduces the worry and you become more normal - but a bit drowsy! If you ask your GP for some (you could always say you are just nervous of flying) he/she will prescribe a short course.Hope this helps. Rob
If you can, I would say definitely go on a workshop. I was nervous beforehand, but within the first ten minutes of the first session, I felt quite relaxed. I think almost everyone is apprehensive but once you get there you realise how good it is to be with people who know just how you feel, and with leaders who can show you ways forward in dealing with the problem. Jane
I just attended a beginner's workshop and it was brilliant. It hasn't cured me but it has changed my negative attitude towards it and put me in the right frame of mind to deal with it succesfully. I am a 36y old male and have had this problem for 25 years although it used to be much worse in my 20s. Now the only thing I cannot deal with at all are planes although I have traveled around the world in my younger years. Like Andrew mentionned, some people don't pee for 20 hours, I was one of them on a trip back from Australia. Actually probably 22 hours as I couldn't even pee at the Airport in Europe. It didn't killed me but I was in big distress and thought that I would have to go to hospital (the biggest humilitaion I could imagine then). Eventually I could pee in the confort of my own home. That was 10 years ago and after that I somewhat restricted my long haul flights. Although I had heard of catheters before I thought the whole idea was weird/scary/humiliating/embarassing/painful/dangerous. Two years ago I had orthopedic surgery to my lower back and as a result had a catheter in place for two days. And I didn't care at all. Funny sensation when it was inserted/removed but for me it was a very positive experience as it was inserted when I was bursting with pain. After the surgery I had been semi-inconscious on a drip for two hours which meant I woke up with a bladder probably full with more than two pints of urine and was completely unable to start peeing. Much much worse than the Australian plane... So the relief that came with the catheter was a million time better that the small discomfort. After that it took me some time to think of doing myself on a plane and six months ago a urologist gave me one to try. I was a bit anxious about infections but apparently it is quite rare to get them (especially for men) if you take just some basic steps before. I was pretty nervous on the first flight I tried but it went well and the relief to finally be no longer at the mercy of your damn sphincter was worth the anxiety/discomfort. Since then I always carry two with me and haven't used them so far as the anxiety being gone, I tend to not even think about peeing and as result I can wait for the airport without even thinking of it and I can keep myself normally hydrated. I haven't done long hauls with them yet but I know I won't have any problem using them. I haven't reached the point where the absence of anxiety will allow me to pee normally in a plane cubicle but I am still hoping (I will probably always struggle with the vibrations and claustrophobic size of the cubicle). At least nothing puts me off the idea of traveling anymore and I am now longer a pile of nerve at the airport before boarding. Honestly try them once in the comfort of your own home. It was a revelation for me. And of course attend a workshop. They are damn worth it! Good luck.
I flew to Portugal last year, and had an uncomfortable flight as I needed to go (despite not drinking 8 hours before I got up that morning). Luckily it was only a 2-3 hour flight so probably about 14 hours total of not going.
I recently booked my honeymoon to Florida and when I asked my Fiance how long the flight was my heart almost stopped! I was woried for days!
I tryed to get a catheter years ago, but my GP told me there was risk of infection, they need to be used in sterile conditions etc and said it wasnt an option. After reading the posts off here Iv realised that you CAN use catherers safely and conveniently!
Untill my trip next year, I will go de-sensing as often as possible, go on a workshop and if there is a fraction of fear about using the loo on the plane/at the airport then catheters will be coming with me!
I am glad to see that you have a plan of action already in place way ahead of your Florida trip! The important thing is to start as soon as possible. Book yourself a workshop, and get as much help and advice from this site as you can. Have you told Your Fiancee about your AP? It might make it easier for her to understand your present trepidation about the long flight, and she may be able to assist you with any problems. At least she will know you are not being secretive. So you have a plan of action, and you have some time in order to carry it out. This is much better than leaving it to the last minute. Keep working at it, and you will make your Florida trip so much easier. Colin
Colin - My Faince knows about it, I told her about 6 months ago. It took me 3 years of knowing her to tell her and it DOES make it easier when someone close to you knows about it.
What I would suggest for Marcus and anyone in a similar position (where you are worried about people wating for you) is find public toilets with only 1 or 2 cubilces. Pubs are good for this. Visit as often as you can, full bladder or empty, and get used to being in the cubicle when other people are in the room.
This is what I did/am doing:
Find a spare hour (lunch break?) make sure you're filled up and go for a drive, stopping ar every pub etc you pass. Spend say 2 minutes in a cubicle in each WC and move on to the next location. If you do start to pee, stop it straight away so you can maintain a full tank. The only thing I discovered doing this is that the toilets were empty and stayed empty for the time I was in there. So it wasnt really a challenge for me. So I waited in the toilet, ready to go, untill someone came in and then tryed.
Hope some of that is useful!
Mark
Re: Planes and Trains
Posted by David on 10/7/2009, 8:41 am, in reply to "Planes and Trains" Message modified by board administrator 11/7/2009, 1:36 pm
I suffer the plane problem (have not been able to pee on an aircraft for about 10 years) I have managed to get to the Caribbean without going, but v. uncomfortable. I booked a cruise finishing up in Acapulco without realisng it was a 14 hour flight back!! After reading your open forum I visited my doctor about the problem and he (having not heard of paruresis) referred me to the 'continent nurse' very sympathetic lady gave me 2 Lofric Primo catheters to try out at home. Very simple and extremely hygienic single use catheters. I have satisfactorily used both and I am being prescribed a pack of 28 for future use. Thanks Andrew for your help, what a difference your pages wil have made for me
