Unable to go even at home

Hi there,

The stories on this forum are really helpful to me, but it seems like most people have issues in public, or when other people are about. These are issues for me too, but I also find it very difficult at home alone too. Anyone else here like that too? If so, were you ever able to get better? Any advice? Like some others, I also thought it was just me, and I have little to no self confidence. Even talking to a doctor seems like an impossible task to me.

Thanks.

#122 by John

Hi John
Glad you found the stories helpful. As a workshop leader, I just want you to know that: yes there are many who are in your situation; and yes it is possible to reduce the severity of the condition. We are experienced with dealing with your level of severity on the workshops and, to put your mind at rest, you would not start your desensitisation with peeing. We have stages prior to that, to deal with the anxiety. And it is all under your own control.

Your anxiety is triggered by two things: the need to empty your bladder, and the situation around you. So we strongly recommend that you use Intermittent Self-Catheterisation (ISC). Using these disposable catheters means you can empty your bladder anywhere. Knowing that will remove the anxiety about needing to empty your bladder.

I realise that talking to a doctor seems impossible; I have been there myself in my 20s and broke down in tears. In hindsight I should have taken the time to write down what I needed to say and taken that along. GPs are a lottery: some understand and prescribe catheters, others are mystified and prescribe medication. Hence the need to explain what is happening to the body, and that medical advice is to use ISC in severe cases, and CBT for all cases. When you decide to go to your GP, get back in touch and we can help with the information you need to get over.

Thats enough for now; have a thing about it all and do get back to us on this forum, or by email.
Cheers
Andrew

#123 by andrew

Does the workshop also cater to those who have attempted ISC but found it impossible to pass a catheter?

#171 by Anonymous

Yes and no. To come on a workshop you need to be able to pee in your hotel bedroom when you are alone. If you could not do that, you obviously would not attend. If you can do that, then the workshop can help you. Someone with that level of severity is dealt with separately from less severe sufferers; without going into detail, the approach is to deal with the anxiety of just being there, however long that takes, before even considering any desensing. And even then, the decision to move on is entirely yours.

But its worth looking at “those who have attempted ISC but found it impossible to pass a catheter.”

If this is due to a blockage or stricture impeding the catheter, then a urologist should be seen to investigate and remedy the blockage.

If you have obtained catheters and not been shown by a trained nurse how to use one, then you should do so: either at the GP surgery or at a urology clinic. There is a specific technique to it, which it takes a trained person to explain.

If you have been shown how to do it, but it is squeamishness, akin to a fear of needles, that stops you, then seek help to find a graduated way of approaching it. There is an understandable nervousness that insertion is going to hurt; but it should not. As for possible pain, it is feasible to use an anaesthetic gel smeared into the meatus (the opening you pee out of). I had a cystoscopy (aka bladder scope) with gel to investigate an issue with the bladder: I did not feel a thing apart from a “bump” as it went through the sphincter. Once you have inserted a catheter that way, you can then approach inserting it without the gel.

If you have tried inserting it and it hurt badly, the technique is wrong. It should slide in smoothly and pain-free. Users state that the worst is some stinging when you next pee without the catheter; but they say this is nothing compared to the pain of not being able to empty their bladder.

Finally catheters come in a range of diameters, to cater for the range of urethral diameters. I assume that if the cath is the wrong diameter, that could impact on the ease of its sliding in. There are also at least two types of tip, which apparently you can try out to see which is best for you.

So I hope you can take heart that there is a population of guys out there who use catheters either regularly or as a back-up, and do so with no issues. There are meant to work smoothly, so go and seek help to resolve your particular issue.

Andrew

#172 by andrew
The following user(s) said Thank You: youcancallmeal

Thanks, Andrew for getting back to me. ISC was attempted by a trained nurse who was unable to insert the catheter, even though they used lots of gel, they just couldn't get the catheter past the sphincter. The urologist who authorised the start of the ISC training confirmed that physiologically there isn't any blockage and also carried out ultrasound and IVP procedures. As a result, I was referred to a psychologist who in the past has helped. More recently have suffered a third bout of depression due to this issue, I've been referred for CBT support. At present, I wouldn't be able to pee in a hotel bedroom but would be interested in learning more about any alternative approaches. Plus, I think I would benefit from being part of a community and able get to know and talk to other men who suffer from this condition.

Am I Ok to contact directly via the general e-mail address?

#173 by Anonymous

Hi John,
Sorry to hear about your problems.
As a fellow paruretic, I’ve learned that becoming familiar and confident with the use of a cath. as the ultimate ‘get out of jail card’ has been invaluable for me. It also reduced the overall level of anxiety knowing I would never be ‘trapped’.
If you can approach the prospect of learning the technique again, it would be a great way to build confidence.
It seems that you had a bad time with the procedure. I expect many elements combined on the day
that got in the way. It’s really more than about passing a tube into the bladder; your level of anxiety, and the demeanour and approach of the professionals greatly influence the outcome.
On a practical note, modern Caths are self lubricating and discreet.
Take a look: www.coloplast.co.uk/speedicath-compact-male-en-gb.aspx
Do let me know how you get on!
Best, TonyG

#174 by cielodog
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