U.K. PARURESIS TRUST

UK paruresis trust

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backflow to kidneys?

Posted by Bea on 2/3/2009, 10:25 pm

I am new to the forum - hello!
I'm 23 and have suffered urinary retention since childhood but it was never treated in childhood. When I saw my GP age 16 he was baffled and said he'd never come across it. I went to A&E a few years later after not going for over 36 hours and was catheterized and for several months I couldn't go at all without the aid of a catheter. Now I can go usually after one or two attempts but I am told my bladder doesn't ever empty properly even when I can go it only partially empties. They said it was psychological cause although I never went for all the tests (just ultrasound and urodynamics...yeuk!) I am meant to catheterize regularly because of this. But as I dislike catheterizing and find it extremely painful I avoid doing it unless I can't go for an EXTREMELY long time. I told my continence nurse this a couple of years ago and she told me off saying I would get back flow to my kidneys causing scarring that could seriously damage them in around 5 or 10 years time. Since then I've read on the internet that this is not the case. Does anyone know if there is a possibility of kidney scarring/backflow? I don't want to go back and ask the urologist for fear of more invasive tests!

interesting forum, thanks! It is very inconvenient not being able to pee aint it? Having to worry about where you can go and what transport you can take etc. I don't work now partly because of it but mostly because I have other mental health problems also, but when I was working my boss told me off several times for my frequent and long trips to the loo and demanded proof from my doctor to say I had a problem! How humiliating. And the pressure didn't help things either! Anyway I'm going on a bit so I'll stop there. Pleased to 'meet' you folks

Bea

Re: backflow to kidneys?

Posted by Andrew on 3/3/2009, 9:39 am, in reply to "backflow to kidneys?"

Hi Bea

Welcome to this board, and I hope you will find it and the linked website helpful.

Your question about backflow: first I have to emphasise that we are not medically qualified: anything written here is from personal experience only, unless accompanied by a reference.

I do not know the answer about backflow; only that the medics take urinary retention very seriously and treat it as an A&E case.

If I can find a more helpful answer I will get back to you; in the meantime, where on the internet did you see that scarring etc "was not the case"?

Re self-catheterisation; this should never be painful. If it is, either the catheter is not suitable for you (e.g. wrong diameter of tube), or is not lubricated, or the technique is wrong. I assume you are female (forgive me if i am wrong) in which case the cath is short and the urethra straight (unlike for men). A disposable self-lubricated cath should be comfortable to use. They come in a container that looks like a lipstick (i.e. discreet). I suggest you go back to your continence nurse and ask to be shown other makes, sizes etc.

Secondly, get in touch with the Carol the women's co-ordinator (she is in the USA) who is also on the board of the IPA. She has written a book about paruresis from a woman's standpoint, which may be useful for you. The book details are on our books page:

http://www.ukpt.org.uk/news_info/news_info_Books.htm

You can contact her via the women's page of the IPA; you will find her email address there

http://www.paruresis.org/womens_resources.htm

Hope this helps you

best wsihes

Andrew

Re: backflow to kidneys?

Posted by Anna on 3/3/2009, 7:02 pm, in reply to "Re: backflow to kidneys?"

When I went to see the urologist, I asked if there were any dangers of not going for a long time. He said that it could cause a weak bladder and hence incontinence in later life, but wasn't immediately damaging and that you would just end up urinating if you were in any danger. That said, I'm not sure he quite understood the nature of the condition, in that as painful and as much as you do need to go, you just /can't/.

As for the catheters, I was given several different brands to use and have found it horrible. When the nurse did it for me the first time I was almost in tears, and despite many attempts by myself have never succeeded because I simply can't bring myself to push it up. I found it a hugely invasive, and also painful process. It doesn't help that if you get nervous about doing it then your muscles clench making it a harder process. (I don't mean for this to scare you or anything, just so that you know you're not alone in finding self-catheterisation painful.)

Re: backflow to kidneys?

Posted by Jane on 3/3/2009, 8:09 pm, in reply to "Re: backflow to kidneys?"

Re. catheters for women. I was very nervous about this, but when I used one under the supervision of the continence nurse, I did not find it painful or very difficult to insert. There was just a slight stinging sensation for a second or two, but nothing to worry about. However, I did get an infection, which has put me off trying again. I am trying to motivate myself to have another go. If anyone has used them successfully I could do with encouragement, as I am still inhibited from the travelling I would like to do and this would be such a good 'emergency' back up.
In terms of other outings, I've been getting on better since attending two workshops last year - nowhere near cured, but certainly better. So I would definitely recommend the UKPT workshops to other sufferers.

Re: backflow to kidneys?

Posted by Bea on 4/3/2009, 8:12 am, in reply to "Re: backflow to kidneys?"

Hi Jane,

I gather that most people get on well with catheters and think of them as a god-send for this type of problem! I know you are more likely to get infections when you first use them, so it might be worth sticking it out if they're not painful to use for you, it might help you in the long run.

take care

Re: backflow to kidneys?

Posted by Bea on 4/3/2009, 8:08 am, in reply to "Re: backflow to kidneys?"

Hiya and thanks for the response.

I'm sorry you have problems with the catheters but it's good to know I'm not the only one who finds them painful and awkward to use! They make me bleed and give me infections too...yeuk...sometimes they don't seem to empty my bladder fully either! horrible things :/

take care

Bea

Re: backflow to kidneys?

Posted by Bea on 4/3/2009, 8:04 am, in reply to "Re: backflow to kidneys?"

Thanks for your response

The continence nurse said I am inserting the catheters correctly and I have tried several different brands of catheter and find them all extremely painful. The best are the compact ones but I still find them very painful. When I tell nurses etc this they seem to think I have a low pain threshold - but I have broken my collerbone, wrist etc and barely flinched so I know this not to be the case! But then perhaps there is another problem additional to the pareresis like...is it called a stricture? Because that hasn't been ruled out yet and I guess that would make catheterizing difficult. I suppose I won't know unless I go back for the dreaded tests!

I'll have a look at those links and perhaps brave a visit to the continence nurse :/

thanks again

Bea (yes I am a female )

Re: backflow to kidneys?

Posted by Andrew on 4/3/2009, 8:35 am, in reply to "Re: backflow to kidneys?"

Hi Bea

From Carol you can get detailed instructions how to insert a catheter (I have a copy and can email it to you, if you email me at the address at the top of this page). I say this because it may be that the continence nurse has never actually used one herself and so lacks that extra little bit of advice. Obviously inserting at even a slight angle could push the tip against the wall of the urethra and so hurt. More likely is that your sphinctre is clamped shut, and so pushing through it is hurting.

Learning to relax mentally and physically may help; for this, Kegel exercises can be useful i.e by learning what action closes and relaxes the external sphnctre may help you to relax it enough.

Gentle tickling of a nerve at the base of your spine, just where the cheeks separate, is reportedly useful in stimulating a flow in women.

I hear that you have built up a strong aversion to using a catheter for good reason; is there any chance you could reframe your thinking to associate the procedute with inserting a tampon i.e. it is a similar procedure; the one is acceptable (?) and the other at present is not; by aligning your view of these two concepts, you may ease it a bit.

best wishes

Andrew

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