U.K. PARURESIS TRUST

UK paruresis trust

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Catheters

Posted by John on 29/3/2015, 11:09 am

Hi all,

been suffering from AP for decades now I usually get around it by using self catheterization, however now I need some new ones. Can anyone tell me somewhere online where I can purchase single reusable catheters and have them mailed to my door.

I tried to get some free samples of the speedcath by going to their website and filling in an order form - but two days later they rang me and started giving me a right grilling over the phone asking this and that. At the time I was at work and I simply could not hold a conversation with them. Cheers guys.

Re: Catheters

Posted by Kerry C on 29/3/2015, 7:17 pm, in reply to "Catheters"

Hi John,

I use the Coloplast Speedcath compact male disposable catheter. I did some investigation to try & get them online, but apparently you need a prescription to get them in the uk. I was fortunate that I have been able to persuade my GP to give them to me on repeat prescription.

These catheters are not re-useable, but I find I can hide a couple in my jacket pocket along with a couple of sterile wipes, so I can use them easily without any one knowing.

So I'd say its well worth having that conversation with your GP, although you will probably find you will be educating them on the condition.

Good luck, if you have any more questions, ask away!!

Cheers

Kerry C

Re: Catheters

Posted by john on 29/3/2015, 8:06 pm, in reply to "Re: Catheters"

Hi Kerry,

yes I tried to get hold of the speedcath free samples - but they ended up ringing me up and the upshot was they didn't send them. They look good. Are they comfortable to use? I will be having a word with my gp soon cheers.

Re: Catheters

Posted by Kerry C on 30/3/2015, 3:19 pm, in reply to "Re: Catheters"

They are very good, they allow me to enjoy events & days out that would be either impossible or very stressful. Being very discrete & easy to use too, no need for sterile gloves & creating a sterile area to work in, necessary for conventional catheters.
They are as comfortable to use as anything being inserted can be!!! A lot less uncomfortable than the normal indwelling type of catheter used in hospitals etc that are normally used to alleviate urine retention. It does take a bit of practice & getting used too, being very slim for the sake of comfort it can take a while to completely empty a very full bladder too.

On a psychological level, I only use them as a fail safe device. I try to empty my bladder "normally" several times before hand, only resorting to the catheter when my bladder gets to that uncomfortably full state. I've on occasion been able to empty my bladder in difficult situations by trying before using, successes I would have missed out on if I'd just gone straight to using the catheter. I think its important to use them as an aid to recovery as opposed to a crutch to lean on if that makes sense.
Good luck with your GP.

Cheers

Kerry C

Re: Catheters

Posted by john on 30/3/2015, 5:34 pm, in reply to "Re: Catheters"

Thanks Kerry have booked an appointment to see my gp next week. He is a young guy so he might be okay + I have had catheters issued a few years ago from the same surgery but not from him so it should be on record.

I don't know how this guy is going to react but I can also show him this website as a reference.

At the moment I'm desperate just started new job and am having to cath up once a day at dinner time the worst I've been for years it's even causing me lots of anxiety too. I just hope this is a phase that will calm down a biy.

Re: Catheters

Posted by clive on 4/4/2015, 9:44 pm, in reply to "Re: Catheters"

I was recently diagnosed with prostate cancer and radiotherapy was recommended, but as this involves drinking large quantities of water, with possibly many visits to a very busy hospital toilet, I couldn't face it, and refused the treatment. I didn't think of catheters and they were not offered. I should think the once only type that you use may not be suitable for me, but I think there is something similar, but with a tap on, so that it can be left in place for a number of visits. Your comments would be very welcome. I'm seeing my consultant next week, so I'll see what he has to say.

Have you heard of Alexander Heinz, creator of Bold Bladder, a disc/booklet, for which he charges 30/50 Euros and "guarantees" to cure paruresis? He offers a 50 days money back guarantee.

Hope to hear from you.

Re: Catheters

Posted by Roy on 6/4/2015, 11:51 am, in reply to "Re: Catheters"

Hi Clive,your response to treatment offered would be my first reaction but thinking about it I would seriously reconsider the treatment offered ,go to your GP and explain the situation fully and that you would like to be instructed in self catheterisation so that you can do hospital visits with a full bladder ok.Turning down recommended radiotherapy solely because of our problem is not the sensible response ,is it? Hope everything goes okay for you Clive

Re: Catheters

Posted by clive on 6/4/2015, 9:37 pm, in reply to "Re: Catheters"

Hi Roy, Many thanks to both you and Andrew for your support and advice. Your replies have already helped to dispel the feeling of being alone. I don't find it easy to confide in people. I see my consultant on Friday and will tackle him first on self catheterisation and hopefully be accepted for radiotherapy.

Thank you both again. Clive.

Re: Catheters

Posted by Kerry C on 7/4/2015, 1:19 pm, in reply to "Re: Catheters"

Hi Clive,

I had a hernia op followed by bladder neck surgery a few years ago. In between the two ops I was fitted with the usual indwelling catheter, but rather than having the usual bag fitted, they fitted a valve/tap which was strapped to my thigh. So to urinate I just un strapped the valve & stood at the toilet & opened the valve! Its not the most comfortable situation to be in, with a tube haging out of you, but it does give you control.

Good luck!

Kerry C

Re: Catheters

Posted by clive on 7/4/2015, 9:35 pm, in reply to "Re: Catheters"

Hi Kerry,
During the radiotherapy procedure the valve/tap catheter could be my best option as it can be used for a number of toilet visits. I will suggest this to my doc. when I see him on Friday. I also like the idea of self catheterisation
when I've finished the therapy. I think it would improve my limited social life.

Thanks for your interest and good wishes.

Clive.

Re: Catheters

Posted by Andrew on 6/4/2015, 2:52 pm, in reply to "Re: Catheters"

Hi Clive

I have not heard of Alexander Heinz or his product. Looking at the website, I think he is offering a self-hypnosis method. The UKPT's stance on hypnosis is explained on its website here:
http://www.ukpt.org.uk/first_visit/first_visit_Faq.htm

I suppose you have nothing to lose by spending 30 euros and having no expectations. Personally I am wary of websites containing a hard sell, capital letters, guaranteed cures, and no contact address. I would not expect to be able to get my money back.

BTW I agree with Roy. Tell your GP and your cancer specialist that you get "urinary retention" (the medical term for the physical condition) in social situations or if under pressure.

Andrew

Re: Catheters

Posted by Bill on 7/4/2015, 9:22 pm, in reply to "Re: Catheters"

For what it's worth, a couple of years ago I purchased a programme by a British hypnotherapist called Paul Levrant who is legit and qualified in his field (he runs a practice in London) and which offered money-back if unsatisfied. I believe that it did actually help me a little bit, especially in the early phases of trying to beat AP when I was trying to edge my way up into using urinals regularly, but I don't think it's an effective substitute for doing a workshop and physically practising desensing. If Andrew thinks it appropriate, I would be more than happy to send the MP3s across to you, however?

Re: Catheters

Posted by clive on 7/4/2015, 9:47 pm, in reply to "Re: Catheters"

Thanks for that Bill. I really need to get past the cancer problem before I can open my mind to all the options for easing the paruresis.

Clive.

Re: Catheters

Posted by Bill on 7/4/2015, 11:25 pm, in reply to "Re: Catheters"

Of course, Clive. I wish you all the every success and strength in fighting the disease. Very best wishes.

Re: Catheters

Posted by Richie on 9/4/2015, 11:15 pm, in reply to "Re: Catheters"

Hi Clive
I don't come on this board much except to read stuff but I've been around many years as Andrew will testify!If you have prostate cancer and have been recommended to get radiotherapy you really need to sort this out. Go and see your GP, and talk it through; ask for a decent appointment not a 10 minute one, you have Cancer not a cold. Explain your problem I am sure they can and will help. Also see your Oncologist and explain things, again they are there to help you and cure you, there will be lots of ways around this, caths or maybe a more private loo... on no account let this rotten condition deny you treatment!!! The last thing any decent medic wants is for his patient to refuse treatment over an issue that CAN be sorted!

Rich

Re: Catheters

Posted by clive on 11/4/2015, 10:10 pm, in reply to "Re: Catheters"

Hi Rich,

Just to give you a bit of background. I'm 77 yrs,. old and I'm no stranger to cancer . I had lymph gland cancer 6 yrs. ago and chemo. was successful. I had an interview with an oncologist yesterday (not my usual man). I waited patiently while he studied my history on his computer. It should have been clear to him why I had turned it down as I had discussed paruresis with my Clinical Nurse, who is part of their team, several weeks ago. I'm not sure I convinced her how serious the phobia is. She didn't suggest catheters and I didn't think about asking as I didn't know about you guys at that time. Anyway back to yesterday's oncologist. He opened up with, "I can't believe you've turned down a life saving therapy". Again I tried to explain the reasons and although my best efforts still left him dubious, he said he would contact the doctor in charge of radiotherapy. So I'm waiting for another appointment. That's the story so far. I'll keep you posted.

Clive.

Re: Catheters

Posted by Richie on 12/4/2015, 5:28 pm, in reply to "Re: Catheters"

Hi Clive,
Yes I get the picture now. Only fellow sufferers really understand this; I've even heard of Urologists advising patients to drink lots of water..how dumb..even my limited knowledge of the urinary system is better than that.But it is what it is, and frankly no one is ever going to help us if we dont help ourselves. So you need to patiently spell it out to them, and eventually the penny will drop and they will help you out.
Why not print out some sheets from the web site explaining the condition and take them with you?

Anyhows I totally understand where you are coming from, so good luck and keep us posted..

Richie

Re: Catheters

Posted by Clive on 12/4/2015, 9:20 pm, in reply to "Re: Catheters"

Hi Richie,

The Consultant I saw last Friday, after much deliberation, said I was too old for surgery and the best way forward for me was radiotherapy, but he didn't know if the usual hospital catheter with bag could be used. When he said he would contact the Specialist in charge of therapy, I stressed that catheters of some kind HAD to be used. Doctors don't like being told what to do, but I made myself quite clear. When my next appointment comes through, I will do as you suggest and take copies from the website with me. Incidentally when I brought up the subject with my GP years ago, he said "Nature will find a way".

Regards Clive.

Re: Catheters

Posted by Andrew on 12/4/2015, 10:58 pm, in reply to "Re: Catheters"

Hi Clive, medics most of the time are dealing with people who have no medical or scientific knowledge, only school level education, and who dont want to know. Hence they tend to assume you dont know anything relevant, or would not understand. They tend to treat you more seriously if you use formal medical terms. So you can say you get chronic urinary retention; that will probably scare him. If he suggests you will manage, tell him "the autonomic nervous system closes the urethral sphinctre". He will probably ask you if you are a doctor, and treat your concern more seriously!

For example, when I told my urologist that I was glad to have my hydrocele treated cos I was fed up with looking priapic,he visibly startled and asked me if I was a medic, because I had used the word priapic.
Then when I mentioned to the anaesthetist about shy bladder and the autonomic nervous system he went ecstatic: "at last a real world example of the autonomic nervous system. I have such trouble getting my medical students to understand what it is; can I bring you into a class to explain it to them?". !!!

Re: Catheters

Posted by Richie on 15/4/2015, 8:07 am, in reply to "Re: Catheters"

"Nature will find a way"... unbelievable!

Re: Catheters

Posted by john on 15/4/2015, 9:12 pm, in reply to "Re: Catheters"

Update: Saw GP explained about Paruresis which he had never heard of - but was interested in. He prescribed me the speedcaths!

Re: Catheters

Posted by clive on 17/4/2015, 9:22 pm, in reply to "Re: Catheters"

Pleased your GP appointment went so well. Hope your new job leads to a very successful career.

Regards Clive.

Re: Catheters

Posted by Adnrew on 10/4/2015, 9:09 am, in reply to "Re: Catheters"

Hi Bill. No problem re MP3 with me. Clive has given his email address in his posting so you can send it to him direct.