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Moderatorsusan

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Reply with quote  #1 
It's Sunday morning and I am typing this in tears whilst sat on the sofa. I was diagnosed with a chronic infection by the Prof based in North London back in September. I then had to have a cystoscopy due to abnormal cells found in a urine sample. Whilst the cystoscopy showed no cancerous cells, it did show inflammation of the trigone. I have been off work since September and am taking high dosage abs under the Prof's care. However I am in pain, more so when the bladder regularly flares and I have that horrible urgent feeling. I honestly don't think I will ever be able to go back to work again and my mood has dropped through the floor. I used to be active and now am housebound. My uro/gynae has suggested the SNS to help with the frequency and bladder pain sensations. Is this a good idea as I desperately want some form of my life back. My husband has been a total rock but it must wear him down seeing me in constant tears. Work too have been amazing but it makes me worse when I think that I may have to give it all up due to this horrid disease.

Would love to chat to a few people who are going through this too and anyone who has had the SNS procedure.
ModeratorKate

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Reply with quote  #2 
Hi susayates.
So sorry you are feeling so miserable,.
Have a look at this post in particular:

http://cobf.websitetoolbox.com/post/sacral-neuromodulation-5675816?highlight=nerve+stimulation

am sure you will gain some useful info, am sure when Moderator Jen around she will try and reply.

Kind regards.
kate

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coboffice

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Reply with quote  #3 
Hello

Sorry to hear you are so down at the moment. I also suffer from trigonitis and can empathise with your pain and discomfort. I find that antibiotics irritate my bladder (particularly Macrodantin) and wonder whether this might explain the increase in your symptoms at present.

I am around in the COB office tomorrow if you would like a chat.

Best wishes

Susannah

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iwillsurvive

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Reply with quote  #4 
Hi susayates

So sorry to hear how bad things are for you at the moment. I know how difficult it can be when you reach a real low but please don't give up hope. I'm not sure if we've chatted before but I'm also under the Prof. I've been a patient for over 18 months and I'm now almost symptom-free. No bladder pain whatsoever. I also have no urgency symptoms any more and improved flow. Now leading a completely normal life but 2 to 3 years ago things were very different and I was in a lot of pain with urinary retention as well. Personally I would be guided by the Prof it might be worth holding off having the SNS whilst you're still fighting the chronic infection. Hopefully once the infection is under control things might be more manageable. It's still very early days if you've only been treated since September. You are properly battling multiple bugs in your bladder which means it will take time to get the infection under control. Please don't give up hope, I have every faith in the Prof and I think his treatment regime will become mainstream in the very near future. Are you a member of the Facebook group that a number of the Prof's patients are involved in and also Dr A's, the other UK specialist treating chronic bladder infection. It's a great group as we are all going through exactly the same treatment so can help each other. I will send you a PM with the link.
Moderator_Jen

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Reply with quote  #5 
The SNS has been like a miracle for me and it was the best thing I've ever done. It has dramatically reduced my voiding frequency and I am able to empty fully.

I personally believe the SNS is the best thing since the creation of chocolate and I'd highly recommend having the SNS done xx

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Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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camellot238

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Posts: 148
Reply with quote  #6 
Hello, i empathise with how you are feeling, hope you begin to feel better quickly.

Not sure if this would help you but this has helped me on odd occasions, take the cystitis sachets, eat plenty of natural live greek yoghurt and the antibiotics. The sachets take the edge of the urgency and the greek yoghurt puts back the good bacteria and stops thrush which can be a problem. 

If the 3 above things in combination don't help it might be worth trying buscopan I know it is used for ibs which I do suffer from, however I have found it helps my bladder, does say on the leaflet that it can calm down cramps in the gut, stomach, bladder and tubes etc. Obviously check if it is safe for you to use.

best wishes to you.
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