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SophieC

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Posts: 4
Reply with quote  #1 
Hiya
I'm new on here and only 21.I am looking to speak to people who have fowlers syndrome as I am feeling really lonely having being newly diagnosed with it.
I have had problems with pain, frequency and urgency for nearly 5 years now. About 2 years ago it was diagnosed as IC. However it has just got worse since and I had urodynamics done last week and they diagnosed it as fowlers. My problem is I cannot ISC as the pain is too extreme and my urologist knows this so most times I just leave it for over 24 hrs. I am in agonising pain 24/7 with the pain in my back the worst!
My urologist has told me i need SNS but I am so so scared. There are so many questions I have and just can't carry on the way I am but so worried about the op!!
Has anyone else had it done??

Sorry if its all a bit waffly it's late and I can't sleep cos of the pain.

Thanks so much!

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Soph x
ModeratorKate

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Reply with quote  #2 
Hello Soph

Welcome to the Forum.

Am so sorry to read of your symptoms and your continuing pain.

There are a few members who suffer from Fowlers and SNS.
I found these posts for you to read..
Forum
Forum

You may consider becoming a Member of COB, as there is so much more information, help and advice available.
Also from the Website is this info with a link to Fowlers Website.
Here

Hope they assist,and do keep posting, there is usually someone around, listening and remember we can all understand your distress and discomfort.
Kind regards
Kate


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Moderator_Jen

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Reply with quote  #3 
I have been disgnosed with fowlers and IC so I can understand your fear and uncertainty about having SNS - I was exactly the same and it took me a year to finally agree to a trial of SNS. Like yourself I would go in to sudden retention and nobody could get a urethral catheter in unless they did it under a general anaesthetic as my bladder clamped down do hard that nothing was going in or out. My bladder would then decide whether it would want to work or not and when it decided it had got fed up with the catheter bring there it. used to start spasming so hard that it would expel the catheter whole - with the balloon inflated - ouch!! Child birth was a breezed compared to being catheterised!

The SNS has been the most amazing treatment and its coming upto a year since I had the full SNS unit fitted and it has really helped with my fowlers symptoms. Shame my IC has decided to through a few more spanners into the mix. Feel free to email/message or ring me if I can be of any further support . The COB office have all my details cxxxxx

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Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Ladyshopper

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Posts: 44
Reply with quote  #4 
I don't have Fowlers, but I did recently have SNS. I wrote a thread about in on the Overactive Bladder Forum.

Mine was done at University College Hopsital London. Basically they do a "tester first". They insert a temporary lead which comes out of your back, and you plug in to a stimulating device that you clip on to whatever you're wearing. This is done under general - the leads are done, then I had to return after a week to get the device as they don't do it straight away.

I had some pain at the incision sites, but that was it. You are shown how to use the device, it has setting between 0-10, most people have it on around 4. I mostly had mine on around 5! It isn't painful, is a slightly strange sensation, I can only describe is as a throbbing in the left buttock area!! They say it can take up to 10 days to take effect. Sadly mine didn't, and I was still weeing just as much.

There really is no other problems with it, it shouldn't cause you to wee more, leak, require catherterisation or anything. And of course it can be switched on and off (you disconnect it to shower for example).

Because mine didnt work I was back in hospital last week having the lead removed. Again, this was under general. I have had no pain or problems at all with it, and will just be left with 3 tiny scars on my back where they go in.

Obviously if it had worked, they would have implanted the permanent one. I understand this is controlled by remote control.

I hope this helps with some of the questions about the SNS. I really would recommend trying it, because although it is an operation under anaesthetic, it can't make anything worse, and might make it better. Plus can be stopped straight away if it did have some weird reaction that I don't know is possible!
Moderator_Jen

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Posts: 973
Reply with quote  #5 
Yes, I agree mine has been amazing and has really helped with the retention and also the urgency and frequency.  The full unit has worked even better than the trial unit, but there are days I have to turn it up and down but its not a huge issue and very easy to deal with.  Some days I even forget i've got it fitted.

The full unit is surprisingly small and is no bigger than 3 to 4 inches and fits just beneath the skin on the buttock.  I can feel the edge of it over the surface of my skin, but its not painful to touch nor is the site tender.  I hae been warned to be careful with it though and i know of one girl whi managed to damage hers by going on an extreme rollercoaster - apparently the jolting around knocked the wires out of place and damaged the unit - so i now avoid rollercoasters and anything that could cause tramua to my insertion site  - as they say - half an ounce of prevention is better than a pound of cure!!! 

I have a small remote no bigger than the size of my palm) that changes the programme dependant upon the symptoms i'm suffering and i can either intensify or decrease the strength of the signal.  The idea is that you shouldn't actually feel the SNS and i have it set just below the point of feeling a fluttering in my bladder or urethera. 

The trial was very sucessful very quickly for me, from the moment it was turned on within a day I had noticed a reduction in my symptoms and within a week I was voiding normally and not rentaining any urine at all.  There were side effects such as extreme tiredness and dizzyness but this settled when the main unit was fitted after a couple of weeks.

We have now managed  bladder instils as i can be catheterised (still hurts like hell but at least they get it in and manage to adminster the instil) I'm hoping this will help my IC but at the moment its not showing a huge amount of difference but I remain positive and hopeful the corner can and will be turned.

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Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Moderator_Jen

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Posts: 973
Reply with quote  #6 
I have a comprehensive info pack that I was given when SNS was first discussed with me.  If you feel it would help then I could email you this information - please let me know your email address to send it to, or i can fax or post it to you if you would prefer.
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Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
Rosieb

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Posts: 1
Reply with quote  #7 
Hi Soph

I just joined the forum.
Ive just seen your post & know exactly how you feel! I was diagnosed with fowlers syndrome almost 10yrs ago. I had horrendous problems self catheterising & couldn't bear indwelling catheters due to unbearable pain. I ended up on Morphine So I Could try & catheterise But It Didn't help. I eventually had a suprapubic catheter put in until I had a sacral nerve stimulator. Since having sns surgery my bladder rarely causes any problems I certainly don't spend most of my time in hospital any more. I still have chronic pain in my bladder & am on fentanyl for pain control but thats not just because of the fowlers I also have ehlers - danlos syndrome so I have severe chronic pain in my joints too. If you ever need anyone to talk to you can msg me. There's a fowlers syndrome support group on Facebook now

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Rosanna
SophieC

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Posts: 4
Reply with quote  #8 
Hi Rosie,

I know this is such a long time since you have posted that but I have only just seen it! I have had the sns after many problems (my battery just didnt work once they put it under my skin and think some blood clotted in the wire!! apparently this has never happened before!). It is making me wee a little bit more, I go about twice now a day. But....a big BUT I am experiencing really bad pain in my bladder. Really bad like the times i've been in hospital with infections and like you attached to morphine, but I don't have an infection and when I go to the drs they just have no idea what to do! Do you have any tips?
It is just such a lonely place to be because it feels like no-one understands as they cant "see" it! Do you understand where I am coming from?

Sorry for the long winded message, am a bit all over the place haha!

x

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Soph x
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