My experience with Intermittent Self-Catheterisation (ISC)

Hi all,

I thought I’d share my experiences to help anyone that’s at their wit’s end with Paruresis.

I’m a 30 year old male in the UK and I’ve had Paruresis since I was a child. I’d learnt to manage it but realised it was getting worse in the last 5 years; I had started dehydrating myself intentionally, stopped going on planes unless absolutely necessary, stopped using trains the same as planes, staying in doors a lot on UK holidays to avoid days out where I’d have to use public toilets, on nights out having to get drunk ASAP with minimal liquid intake so I could pee naturally as drunkness seemed to inhibit my phobia in most cases.

Basically, my life got miserable. It got even more miserable when I got my new dream job and my phobia would have made it a nightmare, something I only realised 2 weeks in.

I tried my NHS GP and was essentially laughed out of the door as he hadn’t a clue what Paruresis was, and even when showing him this brilliant website he looked at me as if it’s some kind of alternative medicine site and it was an imaginary condition. He told me I’d always be able to pee naturally if I drank enough, and if it I couldn’t go in that situation it 100% had to be either a physical urological problem or a neurological problem. He refused to do anything other than refer me to a urologist whom he said would likely just do scans to look for abnormalities. The wait was 8 months.

Not content with that I decided to go private and it wasn’t anywhere near as expensive as I thought. I used Babylon GP to basically tell a GP I wanted a referral to a private urologist for Paruresis and he wrote it within 5 minutes. I then spoke to a private urologist on the phone for 30 minutes and explained I can’t go in certain places, but can go perfectly well at home or my comfortable places, and I had no issues with flow or anything like that when I was going. He went down the “I need to do a camera examination inside the bladder and scan” route, then I asked can I not just learn intermittent self-cathing and he said that’s a great idea (although he’d recommend the investigation just to rule nasty things out). These two appointments cost me less than £250 all in.

He arranged for me to see his nurse who is an NHS nurse based in my local hospital. I got my appointment within a couple of weeks with her.

I arrived on the day with a full bladder expecting it to be a disaster but essentially we sat down, she asked me a few questions. She then showed me two brands of hydrophilic, prelubricated, disposable catheters and exactly how to prepare them for use. She explained the basics of the hygiene requirements and then asked if I wanted to go home and just try myself or wanted to try in the hospital. I opted to go home as she made it sound so easy. She gave me 7 of each brand (in the smallest size for maximum comfort) and said to contact her as soon as I knew which I preferred. This appointment was free as it was an NHS one.

I got home and had a painfully full bladder so got straight into it. Within 1 minute I had got flow out of the catheter and my bladder emptied so fast I was nearly in shock. It was mental.

Over the next two days I tried 5 of one type and 2 of the other and decided to go for the one I tried 5 times - Coloplast Pocket Size SpeediCath. I told her and within 4 days I had a box of 30 at my front door.

I can now order whenever I want on Coloplast’s website and they deliver within 3 days. If I want to up my order I can, and all I pay is a prescription cost each time. So I could get 30 or 150 and only pay the one price. Each box contains 30 packaged catheters, 30 wipes, 30 discrete disposal bags and a bottle of hospital grade hand sanitizer. My GP was informed and I don’t have to deal with them again at all now, it’s on my NHS record and I get NHS prescriptions for the equipment.

Now for how it works:
1) I enter the cubicle with my small sports bag which has all my stuff in (weighing less than a kilo).
2) I take out my wipes, catheter packet and hand sanitizer.
3) I stick the catheter packet to the cubicle wall and open it slightly, I don’t touch the catheter.
4) I pull my trousers and underwear down to my thighs and clean the head of the penis with one wipe. It doesn’t sting or anything as it’s not a harsh chemical.
5) I sanitise my hands thoroughly.
6) I remove the catheter, it’s in a protective sheath so I can hold any part of it and not contaminate it. But if I do accidentally touch the part that goes inside me I must bin that one and use another.
7) I unscrew the catheter and pour the lubricant (which is just saline) into the toilet.
8) I insert the catheter and feel absolutely nothing, just a slight resistance as it passes my prostate and bladder sphincter muscles.
9) I then get a sudden urge to pee and suddenly pee comes out the catheter- I don’t need to pee myself, I just let the gravity do the work.
10) my full bladder empties extremely quickly into the toilet like a normal standing wee.
11) once flow stops I slowly remove it and a bit more will come out.
12) I pull it all the way out, again it just feels weird but as soon as it’s past the sphincters I feel nothing.
13) I put the catheter back in the package and seal it up, it can’t leak at all but it has no urine in anyway. If there is a bin I bin it, if not I put it in my bag and bin it when I’m home.
14) job done, wash hands and leave.

I feel like my bladder is totally empty when I’m done which I rarely had if I did manage to pee in public.

I decided I wanted to try the pen type compact/discrete catheter so contacted my nurse, again within 3 days I had 10 at my door in discreet packaging. They’re much larger catheters in thickness which worried me but they’re just the same - can feel nothing, feels weird at the sphincters and then can feel nothing when peeing through it. I’ll now get a few of them when I’m going away etc as I can pick and choose what I get.

Now how it’s changed my life?

It’s made my life perfect again. In the month I’ve had it I’ve used trains, used planes, stayed outside of my hotel for 12 hours whilst on holiday and went on a 10 hour safari with limited toilets. I’ve been able to empty my bladder on demand in situations I’d have totally been locked up in before. I’m now getting good at it and the whole process from entering public toilets to leaving is 4 minutes, and that includes a minute of washing hands as I’m a clean freak.

In my 23KG suitcase I easily fit 30 catheters in but on holiday average using 2 per day as I’m finding my Paruresis has lessened slightly since getting them - I believe my anxiety is relieved and allowing me to go naturally maybe around 50% of the time as I know I’ve got the failsafe guaranteed way to empty my bladder in my bag with me in the cubicle.

I thought people would judge the time I’m using the toilet but now I’m at 4 minutes I find some people take longer than me now even though they’re peeing naturally. Nobody has noticed anything.

I hope this very long account of my experience helps someone who is at their wit’s end and needs a way to escape this cruel condition. I’ve been considering ISC for years but never did it as I was scared, I now regret waiting so long. It’s changed my life and I’m happy again.

The one thing that has relieved me immensely is I can now do drug and alcohol screening at work without panic and risk of being told I’m refusing to give a urine sample. I’ve already had one screening and it was a doddle, I told the lady my situation and she set me up in a disabled toilet and said take your time and do it safely, don’t rush. I’ve ended up in tears at previous screenings as I’ve seen my career coming close to being ruined several times as “refusal” to give a sample is seen as a guilty response.

I know this forum is anonymous but if anyone wants details of the urologist I used please post here and I’ll try and arrange a way to get you their details. Maybe they’ll become the paruresis expert if more of you go to him.

#2587 by ISC99

Hi

Delighted at your success in getting ICS sorted out. Thanks for posting in detail; I am sure it will be helpful to others.

Can you clarify the drug testing side. Do the testers let you use the catheter to provide a sample? If so that is a major step forward. Or is it that you are happy to be able to explain your need for no time pressure, and so you can provide the sample naturally?

Do consider coming onto one of our workshops. Obviously the ISC means you are safe for a rehab weekend. However the workshop will help you progress so that you will be able to pee naturally in more instances, while keeping the ISC as a fall back.

Lastly if you ever need to exchange contact details e.g. email address, you can always use our support email address and get the other party to do the same. I can then pass them on both ways. That way nothing gets posted on this public forum.

Cheers

Andrew

#2592 by andrew

I would be very interested to know who your urologist was. I was always put off by the thought of catheterization but having a catheter inserted in hospital recently it wasn't too bad and I think I will try this route.

#2709 by ShyRob

Hi Andrew,

My company allow the use of the catheter for the drug sampling. Luckily the catheters are lubricated by saline and are a hydrophilic so extremely slippery but without chemicals that would taint a urine sample. I had one sampling and was able to go straight away naturally, I went in with the catheter expecting to use it but could pee instantly. The nurse was very understanding though and let me use a hidden disabled cubicle (with water blued). I explained the need to wash my hands before the process so she stayed with me whilst I washed my hands and then left me and stood door doors away outside.

I’m now fully into the swing of self-cathing and find I’m now able to go naturally probably around 50% of the time in places I’d never have been able to go before. When I have to cath I can be in and out of a cubicle in around 90 seconds now which is great.

I’m now using two types of catheter with ease. One is discreet and the packaging is basically a bit larger than a pen, so I can have a few in my pocket or in my rucksack at work I have a pencil case with 10 in. They’re extremely discreet and clean, they pack back into the pen and seal so I can carry used ones until I find a bin if necessary.

I’ve not had any infections yet which was my biggest worry, but the uro nurse basically said if I sanitise my hands and use the wipes on the end of my bits the risk is extremely low.

I’m planning on attending UKPT workshops next year when my current course comes to an end, sadly my course is too busy to plan anything in with no predictability of days worked.

In a way I hope by next year I will have self-cured psychologically with the use of catheters. Having a back-up will hopefully relax me to a point of “cure”, even if I have to carry an emergency catheter that I never have to use.

Again, to any readers of the forum I’m more than happy to swap email addresses via the UKPT support email. I’m happy to discuss any element of cathing itself, how to get introduced to it. Equally I’m happy to hear from other users to learn more about how to make it easier, specifically things like how to carry catheters on a night out for example - a man bag isn’t my thing but I’m sure there must be discrete bags you can carry or something!

All the best everyone!

#2710 by ISC99

Excellent, thanks a lot for the info.

As for a night out, you might consider the sort of thing travellers use to hold money or passport that goes under a shirt.

Andrew

#2711 by andrew

What a great post! Thanks for taking the time to explain it all, I'm sure it will help other sufferers. My GP was okay with my request for catheters years ago, I don't use them now as it was for a long haul flight, at the time my biggest fear.As I have got older, my fear now is hospitals, its really only a matter of time before I end up there unless I'm lucky.But its a bridge I will cross when I come to it; lets hope the medics understand. And lets hope theres a NHS still left in one piece after Covid and lack of funding. Not a good time to get old I'm sorry to say.

#2725 by ricky230
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