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Moderator_Jen

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Reply with quote  #31 
Still have the cold  

Have been signed off for for another week as my stitches aren't ready to come out yet.

As far as the SNS is concerned - its amazing - it certainly has earned the title of my magic box!!!  Its completely resolved my voiding issues 100%.  my bladder can now fill up and i don't feel the constant urge to empty or that i still have to go after voidng.  I've gone from voding about 30 times a day to 4.  Also even though i don't use it at night (because its external, i can have it on all night when its fitted internally and is permenant) i have noticed that is has started to reduce my night trips to the loo - i even managed not go at all last night - i can' remeber tha last time i was able to go through the night without needing the loo.

I'm still waiting for it to help the pain but even if it doesn't help the pain the difference it has made to the voiding is so amazing that trying it was the best decision i have ever made

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DawnCOB

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Reply with quote  #32 
Hi Jen,

Its amazing to read about the reduction so quickly with your frequency.  Really hoping it will begin to help with the pain side of things.

How are you feeling after the weekend ?

best wishes
Dawn
Moderator_Jen

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Reply with quote  #33 
I've now had my stitches out, and I am starting to get back to normal.

The voiding is completely under control and it is now "within the normal parameters"

As of today i am starting to reduce my pain relief.  Because of the side effects of withdrawal/reduction I have to take things very slowly. 

As of today i will take 30mg during the day instead of the usual 40mg. 

I will continue with 40mg at night, but on the 5th day of reducing the pain relief i will reduce my night time dose down to 30mg too. 

I am going to continue the reduction of 10mg evey 5th day and see how low i can go!!!!

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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.

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

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Reply with quote  #34 
Oohh!!!! well done , will be sending more good vibes to assist you..

Love and Hugs
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DawnCOB

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Reply with quote  #35 
Glad the stitches are out Jen and you are starting to feel better.

Keep us posted how you get on with lowering the pain relief.

Sending you healing vibes.

best wishes
Dawn


Moderator_Jen

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Reply with quote  #36 

It's been a whole since I have posted so thought I had better update you all with how things have been.

The sns has worked amazingly well for the voiding issues - I am now only voiding about 4-6 times a day and when I do void the flow is much stronger and I am emptying really well with no retention.

However in regards to the pain, I am sorry to report that it hasn't been any benefit at all. I had started to decrease my pain relief but this was short lived and I'm now back to taking 40mg twice a day as well as taking additional pain relief (such as oxynorn @ 10mg or 20mg) for breakthrough pain.

I have been very poorly since my last cystocospy and I have collapsed at work a couple of times. I have been very tired and have no engery at all, but despite being so physically tired I have been unabe to sleep, I just can't seem to shut down. My pain has also increased and i have had other symptoms - such as memory loss, mood swing etc.   My work have been very concerned for me (they have been incredibly supportive) and under the recommendation of Occupational Health they insisted I had an honest chat with my GP and let him know how poorly i have realy felt, as i hadn't really told my GP how bad things were as i didn't want to admit i couldn't cope or that I was feeling so weak and useless.

The result of my chat with my GP was that he signed me off work for 2 months. My dr thinks that my body has just been through so much over the past few months that it has just shut down. He also thinks that because the sns signal is not constant (as it is turned off at night) that it has affected my body's natural rythum, and my body is figthing against itself, leaving me feeling weak and tired.

I have also seen the consultant who oversees my SNS trail and she believes that although the SNS trail has been an amazing sucess as far as the voiding is concerend, the changes in the neuro pathways have affected my body in a negative way

Both the consultant and my GP believe that the best way forward is to have the sns fitted internally as it can then be turned on all the time. They think that once i have a constant continious signal my body will cope with things much better and won't react against it so negatively.

I am having the SNS fitted permenantly on Saturday 17 March.  I am being admitted on Friday evening and the op will take pace the nest day - I couldn't ask for a better mother's day present!!!

Both my GO and consultant have advised that I don't rushg back to work after the op and take my time to recover and allow my body the chance to heal fully.

I kinow the above sounds a bit negative, but i don't feel negative about the SNS at all - I think that once its fitted internally I will gain a huge benefit from it and I will notice a huge difference in my general well being. 

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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
ModeratorKate

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Reply with quote  #37 
Hello Jen,

My goodness what a lot you have been going through,

I do hope you will start to feel the benefit of the internal SNS, and  that will give you the pain relief, and the as everyone says your Body can stabilise.

You say " I know above sounds negative"
Not at all , you are an amazing person facing all this pain and discomfort for so long.

Take care and good luck for Saturday 17th.
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Kate


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DawnCOB

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Reply with quote  #38 
Hi Jen,

Thank you for stopping by and letting us know how you are getting on..

Just wanted to wish you all the best for Saturday , we will be thinking of you and wishing you well.

Let us know when you can how you are ..

All the best

Dawn 
JaneW

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Reply with quote  #39 
Good luck with the op Jen and best wishes for a speedy recovery.
Love Jane XX
DawnCOB

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Reply with quote  #40 
Hello Jen,

How did it go ?  

thinking of you.

Dawn x
Moderator_Jen

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Reply with quote  #41 
Hi all

Am now home.  The op went well and the unit is snuggled inside me and working well. The insertion sites are very sore and I can't lay on either of my sides due to the pain.  I can only lay either flat on my back or on my tummy.  Sitting up isn't an option at the moment!!!

Thank you all for the best wishes, your support has been amazing and I am deeply touched by all your friendship and kindness towards me xxx

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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
JaneW

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Reply with quote  #42 

Hi Jen,It's good to hear that the op went well.I hope that the pain eases as quickly as possible and that you continue to improve.Love Jane XX

ModeratorKate

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Reply with quote  #43 
Well done Jen, hopefully things will settle down and your pain will ease.

It,s amazing how we adapt to different sleeping positions, it is not until the body is ready, and we suddenly realise we can turn unconsciously.

Love Hugs and Prayers.
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DawnCOB

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Reply with quote  #44 
Hi Jen,

Glad to hear all went well and you are home recovering.

Hope you are on the mend very soon.

best wishes

Dawn
DawnCOB

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Reply with quote  #45 
Hi Jen,

How are you feeling ?

Hope you are more comfortable and able to sit /lay on your side...

best wishes
Dawn
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