Alex's story

I vaguely remember the first time I ever had a problem peeing which was when I was about eleven or twelve years old. I have this memory of me standing in front of the toilet and trying to pee but nothing was happening! I told my father, who took me to see his doctor.

His doctor diagnosed that the end of my foreskin was closing up and prescribed some pills for me to take. I duly took them and the problem went away.

Now I wonder if the problem only went away because of its psychological nature?

When the AP came back I went to my mother this time who took me to see her doctor who referred me to a Urologist. The urologist took me behind the curtains and after examination decided that I should be circumcised!

I knew this wouldn't make a blind bit of difference, but I was a shy 12 year old child and just wanted everything to go away – so a few months later I went into hospital for the snip.

I remember during the night after the operation I got up to go to the toilet at about 2am with the drugs still making my head spin like crazy. I passed water for the first time after the operation with no expectation of things being any better; and they weren't.

After I flushed the toilet the night nurse came into my room (I was on Bupa) and told me that I should have rung the bell before I went to the toilet as she could have helped me (!). I didn't say anything, but inside I was very glad I didn't think of ringing that bell.

From that point on I lived with my new found problem without sharing it with anyone. I tried telling my parents and the doctors and look where it got me?

Unfortunately reading the messages here it seems that AP varies a lot between us all. In the early years when I was 12/13 I was absolutely fine peeing in the cubicles. Indeed I remember saying to myself "Hey, this is ok…just avoid urinals and you'll be fine".

But I'm not fine :( The problem has gradually got worse as every year passed by.

By the time I was 16 the problem had manifested itself so badly that I was struggling to start a flow even in my usual cubicle at school. The problem had become inconsistent in that it would work fine one day and other times it would refuse to work at all.

So here I was. Sixteen years old living almost alone. No friends to speak of, and a future that looked very dull indeed. My bladder problem had grown to such an extent that I couldn't even count on using the cubicles anymore, and in anycase they were so daunting that I was avoiding them at all cost anyway.

A few months into the first term of A Levels I started skipping lessons. It was all a bit too much for me anyway but somehow I just didn't see the point of aiming at A Levels when I didn't think I've ever be able to cope with employment in any event.

One of the biggest things I think that is overlooked about AP is the mental turmoil that we all endure trying to plan everything so that we're never caught short. I was already getting fed up with it and I really didn't want to imagine having to live the rest of my life doing the same thing.

So at the age of 16 I left school.

I didn't tell my mother and she never took an interest in me enough to even notice that I wasn't going to lessons anymore. In July the next year I told her that I had given up, but with nothing better to do and with no alternative I soon found myself restarting all the classes I had given up less than ten months before.

I plodded through them for another year or so.

With AP restricting me so much I was in something of a depression. I broke down once while my teacher was blasting me for some minor infringement and I had already broken down just over a year before.

I knew my life wasn't worth living and after months of lengthy planning I finally decided that enough was enough. It was time to end it all. My mother was getting impatient with me and I knew that time was running out. Just before my A Level exams I was lying in bed one morning and I had totally lost the will to get out of bed – my depression cycle had reached its bottom and I didn't have the energy to pull myself out of it.

I fixed a date.

Using instructions from the internet I spent nearly £80 on the ingredients and conjured up a poison that was supposed to work in seconds.

To cut a long story short – I bottled out.

But it was very close. That was the lowest point in my life.

I then decided to give the medical profession another chance. Being older than I was the last time I approached a doctor and being able to take control of the situation I felt more confident in being able to deal with the people who would be trying to help me.

So at the age of 18 I walked into my GP's office and explained the problem.

He immediately refers me to a urologist where I explain it all to him. He suspects it might be a stricture so arranges an appointment for a cystoscopy(sp?).

I receive an appointment letter arranging for the procedure to be carried out in December.

December came and I was preparing myself to go into hospital. I remember being very annoyed with myself for allowing me to get excited that this could be the end of all my problems! For a brief moment I actually thought they might be able to find something wrong and then proceed to fix it.

Of course after it was done I was told there was nothing physically wrong with me :-(

I was prescribed Flowmax (alpha blockers) to see if they would help. They did seem to help a little bit, slightly improved flow and it did seem to be starting slightly quicker – but the side effects of retrograde ejaculation and blackouts when standing up were too much for me to cope with. (Retrograde ejaculation is when the semen doesn't shoot out of the penis but instead (I think) fires into the bladder (although I never felt it shooting there, as others apparently do).

After the drugs failed the urologist decided it would be good to find out what exactly my problem was: bladder neck or bladder muscles. I had an appointment made for me for a urodynamics examination.

Has anyone else here had one of those? A horrible, horrible experience. They stick a big catheter through the penis into the bladder and then pump water into the bladder. The conclusion the doctor made was that my bladder is over sensitive and the muscle in the bladder is flapping about too much or something. The question as to why I can't start a flow was not answered :-(

I saw two different urologists after that (not by choice, just happened to be different ones) with one recommending that I should have surgery to cut away some of the bladder neck muscle while the other preferred to introduce me to self-catheterization.

I had my first lesson last week - so that brings me to the present day. I'll be 21 years old soon and I'm still no closer to finding a solution to this damn problem :-(

I see a few people here have tried self-catheterization before. Tell me, how do you manage with those annoying Astra lofric catheters?! First of all they have to be filled up with water, and secondly you can't flush them down the toilet. That rules out visiting friends then, afterall you can't leave used catheters in someone's household bin without explaining to them what it is and why you've done it :-(

This is beginning to become a very long message indeed, so I'll try and wrap it up here. I'm a little bit lost as to what to do with my life at the moment. I have no friends or family :-(

Sometimes I just say, "Oh sod it, forget about this bloody problem and just do what you want to do". But I risk getting myself in trouble doing that.

I've got into trouble before. My very worst experience ever (of which there have only been a handful) was when I was 15 and on a sailing boat with two other people. It was a small boat, just enough for three people and with no roof/beds/anything. Just an upside down cup with a sail. Anyway, we were all on this boat taking a trip down the river. About two hours past and we reached a pub. I knew this was the first and only stop off point on the whole journey and this was also the toilet break for everyone. I knew I absolutely had to go because I was practically bursting and if I didn't go it would mean another three hours at least with a 100% full bladder.

There was only one toilet, an outside cubicle with at least ten people queuing in front of it. My turn came and after three minutes of trying I knew I couldn't spend all day in there so I left – with a full bladder. And how frustrating it is that you can't go back there for fear of what people might think!! We boarded the boat and set sail home to end the trip. It was painful :(

Am I correct that for all of us it is IMPOSSIBLE to wet ourselves? I gather that with "normal" people if they don't go after a while they simply can't hold it back any longer and absolutely have to go otherwise they'll make a mess. I wonder if one day I'll be able to burst my bladder, I know for sure I'll never be able to pass urine without "trying".