Atonic Bladder

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siouxsie
Posts: 2
Joined: Sat Nov 03, 2012 1:33 pm
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by siouxsie on Sat Nov 03, 2012 2:02 pm

Atonic Bladder

Hey there, I'm new to this forum and after possible help or someone for my daughter who can understand her problem. She is only 20 yrs old and recently been diagnosed with an atonic bladder. This is very uncomfortable for her and coming to terms with long term self catheterisation is difficult for her. From what i can gather is the only course of action for her in the long term. For people unfamiliar with the term it mean she suffers chronic urinary retention and needs to empty her bladder regularly via catheter to stop leftover urine causing infections etc. She had several occasions she went into acute retention before learning ISC. At the moment it is affecting her being able to go out with confidence (understandabley) as its not really a problem girls or lads her own age would even think about. She is just waiting to see a neurologist to check out for any neuro issues that may be causing the problem. She had a cystoscopy and urodynamic testing which showed she had no activity in her bladder muscles when she tried to void. I am hoping there is someone out there in her own age group who has this problem who she could talk to who truly understands how it makes her feel. I recently got her a toilet card from the bladder and bowel foundation hoping it would help her with her confidence to go out more

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B&BF
Posts: 17
Joined: Sun Feb 26, 2012 2:48 pm
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by B&BF on Wed Nov 14, 2012 4:34 pm

Re: Atonic Bladder

The Bladder and Bowel Foundation are a charitable organisation offering support and guidance to anyone over the age of 16 struggling with continence issues. Management of an atonic bladder is by regular intermittent self-catheterisation (ISC) Your daughter may benefit from looking at our website http://www.bladderandbowelfoundation.org which has a wealth of information including details of products such as catheters.

She may also benefit from contacting our clinical helpline. If she has any direct questions one of our specialist healthcare professionals will be able to answer any queries and help her to find services in her local area. The helpline can be contacted on 0845 345 0165.
The Bladder & Bowel Foundation (B&BF)

Helpline: 0845 345 0165
General enquiries: 01536 533255
Email: info@bladderandbowelfoundation.org
http://www.bladderandbowelfoundation.org

Lilyrose
Posts: 4
Joined: Fri Nov 09, 2012 7:37 pm
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by Lilyrose on Sat Sep 21, 2013 1:54 pm

Re: Atonic Bladder

Hi Siouxsie,

I actually have the opposite problem from your daughter (overactive bladder), but can very much relate to her concerns about peers not knowing or understanding what she is facing. Well done to her for getting help for this as I know it is not always easy, even to go to medical professionals to get help. And I'm sure having you there as a supportive mother is helpful too. I also have had problems since I was young (15 or so, although I am in my mid 30s now). All I can say is I know it's hard to see when you're in it, but although she may feel alone at times, there are other people who have similar things and understand the nature of what she is going through. It's just that we dont necessarily know or come across them because we don't talk about these things. It sounds to me that she is a brave young lady and fortunate to have a supportive mum. People get sick all the time with all sorts of things and it is, admittedly, more tricky when it's something that's difficult to talk about, even with close friends and family. But I hope that over time she is able to confide in one or two friends. I'm sure that mature, wise, caring people will see it for what it is - a part of a body that is not working properly (it can happen to any part of the body like the heart, muscles, eyes etc) - and sympathise with the extra anxiety that it can bring because of its sensitive nature.

I hope the neurological investigations were clear and that things have got better since you posted your message.

Also, to note - I have used the BBF helpline and found it informative and supportive.

All the best to you and you daughter,

Lily

siouxsie
Posts: 2
Joined: Sat Nov 03, 2012 1:33 pm
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by siouxsie on Mon Aug 17, 2015 8:10 am

Re: Atonic Bladder

It's a very long time since I made this post and in the meantime my daughter has had a proper diagnosis and surgery.
When she saw a neurologist checking for neuro reasons for her retention it was suggested she has Fowlers Syndrome. A rare cause of urinary retention in young women. She was referred to UCH in London for further investigation and had tests which confirmed it. Being constantly in retention stretched her bladder. However our local urology team were not a lot of help and pretty much dismissed her. London however were very sympathetic and offered her sacral nerve simulation. It is still early days after surgery but already she has seen a vast improvement to her quality of life. I would urge any young women with chronic retention not to be dismissed and told there is nothing they can do for you. Push them to find WHY you are suffering.

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