what an unusual find?

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what an unusual find?

Post  fumbly on Thu Oct 23, 2008 1:12 am

Hello, trying to remember where I got this link from. Very unusual, and at the moment quiet site.

My history was that about two years ago I took myself to my local A&E, with abdominal pain and a tender tummy, and was found to have well over a litre of urine retained. They put it down to constipation, and after four days of being fully cathetrized and given heaps of enemas and the like, I did my thing and they discharged me. The gave me some intermittant catheters to be used only in an emergency and trained me on using them (badly, they did not tell me important hygeine stuff and I gave myself more infections with the catheters than relief)

I have Endometriosis, and on one of my later clinic visits I told the doctor about frequent UTIs and the retention episode. He sent me to a speicalist nurse who did a urodynamics study on me, and found serious problems. She knew of expert Uro-gyhaecologists and referred me on, along with advising me on hygeine and to catheterize once every few days.

I saw the specialist, who was working on a condition called Fowlers Syndrome, and diagnosed me with that. I was unable to tolerate the tests to make the full diagnosis but after one attemp showed positive results (they were supposed to average out six attempts) so they left it at that. I have some issues with the diagnosis, as they say it is not a neurological problem, but a 'primary failure of the sphincter to relax'. The issues are I have other neurological problems and am very recently, because of a brain MRI, looking to have MS looked into.

The urogynaecologist was lovely, but saw me rarely. For a while things didn't change, then, along with an alarming deterioration in my general health, such as now needing a cane to walk, the problems worsened. From being a few times a week person, then most days, she advised me to do it twice a day every day. I thought that was excessive, until I started. I realised the sensation of needing to void bore no relation to the actual amount in my bladder. I could have 500 or more mls in there and feel nothing, or feel urgency, try to go, and have an empty bladder. A terrific pharmacist worked with my doctor to find good cleaning products for me, which I could put in my handbag too and the infection rate has dropped a lot.

After two years of doing this it is only fractoinally easier, female anatomy is so fiddly. I sometimes go into spasm and reject the catheter, I ususally have to void some more after catheterization, it does not get the lot out, sometimes having to chateterize and void and re-catheterize two or three times in one session. Going to the toilet is a long job. I can get bladder spasms and bleeding, and take diazepam daily, once before I catheterize to relax the muscles, or I deny myself entry, and again afterward to catch any spams.

The problem is significantly worse during my menstruation. At that time sometimes the opposite problem happens. I will get sudden overhwhelming urgency and become incontinent before I reach the toilet. More often though, no matter how full my bladder, I cannot empty. In fact a full bladder makes catheterization more difficult and I have to suffer whilst I wait for the diazepam to work.

I am awaiting to be seen by a rheumatologist too. I had an even some months back an episode of hand pain and weakness, such that catheterizing was even more difficult. I tend to drop things a lot anyway. I am terrified of losing the dexterity to do all this.

Forgot to mention am only in my early forties, and had this problem for years, decades even , before it got so bad it was picked up on.

The consultant can only offer an implant to regulate my bladder funtion, which I was not interested in initiallly. Now she says I am not really suitable for it anyway as I have leg issues.

This site is proof I am not alone in doing this. It took me time to find a chemist who could understand the product, and any they order are always just for me, no-one else it seems does this.

Things are worsening. I have been warned of some women who end up unable to urinate at all without a catheter. I took the news with a thank goodness it's not me attitude. Now, I'm not so sure of my future.

Anyway, was goofdto share something unusual. I wonder if there are enough of us around to make the site work, but whatever happens thanks for listening.

fumbly
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Re: what an unusual find?

Post  Rachy on Thu Oct 23, 2008 2:19 am

Hey Fumbly .. You are the 1st member of iCath .. thanks for sharing your story with us hun.. Believe me it will help more people than you know.. I started this forum as like you say people think they are the "only one" with this condition as i did but i have found there are loads of people who share this with us and feel alone.. I am in hope this forum will take off and help others like ourselves.. please keep posting and sharing your tips with us.. im sure we will get a few more join in soon enough ..

Fimble wrote:
I have been warned of some women who end up unable to urinate at all without a catheter. I took the news with a thank goodness it's not me attitude. Now, I'm not so sure of my future
This is my condition.. i cannot void at all as i am in complete retention.. i have to cath 5-6 times a day.. summut ive just had to get used to with no explanation ? Well i know my bladder wont contract but no answers as to why.. My urologist suspected Multiple Sclerosis and refered me to Neuro for further testing..

All the best
Rachy x
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Re: what an unusual find?

Post  rochelle on Thu Oct 23, 2008 4:55 am

I too have been trying to self cath but relying on my nurse, I am sure i will soon get the hang of it. Think im scared to try more than anything. Great to see i have people to share this with.
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Re: what an unusual find?

Post  Rachy on Fri Oct 24, 2008 9:17 am

Hi Rochelle, you almost share the same name as my daughter rachelle Very Happy
Keep on to your urologist for help, thats what i had to do. You will get the hang of it in the end. Very Happy
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