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Just thought I'd like to share some of my recent experiences of getting help with paruresis on the NHS.
A couple of months ago I visited my GP and explain to him about the condition. I wasn't too surprised to find that he had never heard of it. He was, however, broadly sympathetic and suggested hypnosis as a possible treatment. I have already tried this - I did so some years ago and found that while it was very relaxing it didn't help in the least. I discussed two other possibilities him. Firstly I asked if he could book me an appointment with the urologist to talk about self-catheterisation. He agreed to this. I also asked if the local mental health team would be willing to talk to me about providing some help with desensitisation. I explained about UKPT and said how helpful had found the desensitisation workshops which I attended a few years ago. Again, he was a sympathetic and wrote a letter to the local mental health team explaining my condition and asking for an appointment. So far, I was really very pleased with the response.
I received a letter from my GP a few weeks later asking for me to make an appointment to discuss progress. I went along but unfortunately my own doctor was on holiday and so I saw a locum. She told me that the psychiatrist heading the mental health team had written saying that he did not consider that desensitisation would be appropriate as I have had the condition for such a long time - I am 56 and have had it since I was a teenager. The psychiatrist instead suggested that I take a medication – I have forgotten the name, I think it was an antidepressant that has been used to treat phobias. I asked the locum to contact the mental health team and tell them that I did not want to try any medication and insist on them giving me an appointment. I haven't heard anything back from them yet. I've just tried to make another appointment with my GP but he isn't available until next week.
This afternoon I have spent 2½ hours at the hospital. Two hours and 20 minutes of this was waiting in the queue and 10 minutes was spent with the urologist. He had never heard of paruresis. He wasn't willing to help me with self-catheterisation. Instead he suggested that I tell myself, 'I have to pass water' and that if this doesn't work then perhaps I should try turning on tap! Utterly useless!
I am making some progress. I did post a message here a month or two back and Andrew helpfully reminded me that most of the work on dealing with this condition is down to me. I am trying! But I am finding it very difficult. I do go out and try to use toilets in town. I always try to practice at work, either using a urinal if nobody is there when I go in, or leaving the closet door open. I am quite open about the condition with friends. When I go out for a meal with friends, for example, I find it much easier to tell them that I'm having difficulty, rather than sneaking off to try and find a toilet on my own! I have found that most people are quite sympathetic and, as my condition does not affect them in the least, pleasingly disinterested!
My aim is to get enough improvement to enable me to travel to the USA for a holiday in New York. I'm not thinking of booking a flight just yet!
Thanks for your posting. After reading about the urologist, I cant help but feel really angry about it! Him telling you to turn the tap on and 'just tell yourself' must have sounded so patronising to you, sorry to hear about that. Its like telling someone whos claustrophobic and stuck in an elevator to 'just imagine you're in a field'!
I myself went through this process last year, where I explained to my GP, and then to a urologist about AP. Fortionatly they both aggreed that self catheterisation was a good idea and did not hesitate to get me booked in with a nurse to be showen how to use them. The reason I got them was because of my stag night and a flight to the US. They were of great help and take away alot of pressure knowing you have one in your pocket. The best thing since the workshops!
If you can get another appointment with the urologist, tell him 'if im on a long flight and need to urinate but cant, what am I supposed to do?!' Remember if you want to use them, then you have a right to.
Its good that you're honest to your friends about this and that you are at least trying to de-sense, but you say you are finding it very difficult... In what way? Are you jumping in at the deep end too quickly, or cant you find the motivation to go out and practice?
Hi Rob, just read your post and its a disappointing treatment from the NHS I think. Firstly they discourage to help with desensing and secondly they just try to subscribe you pills. What a joke.
I remember when I was younger, before finding this site and attending 2 workshops that I often wanted to go to the doctor or my family and tell them about my AP, and from the treatment you got from the NHS I have to say I'm glad I didn't. Having said that, it is great to hear your friends seem uninterested in your condition and it obviously helps you that they know about it.
I'm sure you made progress after the workshop - maybe now progress is dipping? Perhaps you just need to get yourself onto a refresher workshop?
I went to USA last year. If you can manage the flight you should be ok in New York. I found that most cafes/restaurants have single toilets (bit likes cafes in Europe).... although I do remember racing back to my hotel room one afternoon in a blind panic!
Best of luck mate. Don't let your experience with the NHS get you down - just think, next time someone goes in there with AP atleast the doctors will know what it is
Good news and bad news eh? Fortunately you do not need to go to a urologist to be shown how to use a catheter. We advocate seeing a urologist just in case of the unlikely event that there is a physical restriction that makes it difficult to start a flow. Most find that the GP practice nurse can show you how to use a cath; some GP practices even have a continence nurse which is even better. So wait till your GP returns and ask if that can be done.
As for the psychiatrist: they are medically trained (unlike clinical psychologists) and maybe tend towards medical solutions. The evidence you can use, which we can back up, is that desensitisation does work for all ages; if you have had paruresis a long time, it just takes more desensitisation! Our oldest "client" was 85, and was delighted with his progress. The challenge for you is to provide this evidence without coming over as antagonistic. Perhaps the GP can help here; if you brief him he may be able to write a suitable letter.
So back to you: try to keep any emotion out if it; keep to facts, and put them on the spot.
Let me get this straight. Your urologist has never heard of it!!!!!! My GP has heard of it. The people who write comedy scripts have heard of it. The people who design Wetherspoons toilets have heard of it.... And the guy takes home a salary as a urologist every month has never heard of it?? What exactly can be more important in the world of pissing than a substantial proportion of people who can't???? I'd have him sent back to school. It's a disgrace for the training of doctors.
A few years ago (before I knew of AP and other people)my GP said to me (when I tried to describe my problem) "Oh, you can't go if someone comes in behind you??" Like it was normal.
Well that is pretty much a simple description of the problem and a poor country GP knew about it. And your fancy consultant Urologist has never heard of it???? He should be ashamed.
Sorry to go on.... but Is it possible to get a mailing list of every Urologist in the NHS? Maybe this can be done at zero cost if the right buttons are pushed at Dept of Health? Then send every so called Urologist some info on AP and link to this site. Then there would be no excuse for not knowing about the condition. After 3 years any Urologist who claimed never to have heard of it could be struck off as demonstrably incompetent.
I can fully share with Nigel's anger - I do think that we should at least expect that a urologist has heard of this condition.
I went to see another GP today (mine is on holiday). He has heard back from the Sussex NHS mental health team:
"Unfortunately after consideration by the multidisciplinary team, including Consultant Psychiatrist and team Psychologist, we do not feel there is anything we have to offer this gentleman which may be of value in progressing his significantly entrenched behaviours."
And this is based purely on a letter from my GP. They have not actually seen me or spoken to me!
The GP is saw said that this was proabably about a limited budget and that my condition fell outside the severe range of conditions which they have the money to treat.
I have been offered Clompiramine which has had some sucess in treating other phobias, although I can find no research at all into its effectiveness in helping with paruresis.
I am thinking about complaining to my NHS trust - I now have all the correspondence.
I think it could be worth you pursuing this, if only so future sufferers can get access to more support.
I am sure Andrew among others would be able to give evidence or testimony that CBT has been able to cure and improve many people's conditions. I myself have massively improved through 2 workshops and my own desensing.
To say the condition is entrenched and therefore cant be treated is bull... I have been pretty severe in the past but now I am a whole different person.
I still think though that anyone wishing to cure their AP would be better of reading the book Shy Bladder Syndrome, going on a workshop, and desensing themselves. But its worth pursuing I feel just because there are not many AP sufferers prepared to kick up a fuss about their condition, so good on ya mate.
Clomipramine is a tricyclic antidepressant and can be prescribed for OCD.
It has been around for over 40 years, so it is well established.
If you are considering trying it, look it up on the internet and read about the side effects. One of them is that it may cause difficulty urinating, which is the opposite of what you want!!
I found it was miraculously effective for an episode of depression, but had a few unpleasant side effects, including making it difficult to start urinating. This was over 30 years ago.
Consider trying it, but read up about it first and take care.
I have now written to my local mental health team. I have told them how effective I found the densensing workshops and felt that with a bit more support I felt that I could continue to get better. I also complained about the fact that they have written me off without even talking to me. I am now awaiting a reply. If this is not satisfactory then I will be complaining further, partly because I believe it is really important that AP is understood. If we don't make a fuss then nothing is going to happen.
Good on you Rob. Whatever happens with it, trust that you have already made a difference, no matter how small it may seem to yourself - I bet the next person who goes to them with AP will get a better treatment from them.
I'd say the best thing for you may well be another workshop. (You said yourself you found the desensing workshops effective). I have been hoping to hear from Andrew about a London follow on workshop as I have made so much progress that I can deal with most situations now, but I havn't done much desensing recently so want to make sure I stay on top of this.
Maybe if you're up for a workshop as well it may help make up numbers and we can pursuade Andrew to set up a workshop in the not too distant future.