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Ladyshopper

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Reply with quote  #46 
So glad I found this thread, as I started one in the over active bladder section and no-one replied. I think this is going to be my next course of action, as the botox injections have had no effect.

I'm "lucky", my only symptom is frequency, and I go around 20-25 times a day. I generally don't wake in the night (unless I've had alcohol!) so its purely a daytime thing, but its a nightmare! I've had 4 cystoscopy's with bladder dilation and also urethral dilation (last time they decided it was urethral stenois rather than over active bladder, but latest consultant doesn't agree and has gone back to original diagnosis of OAB).

Have had the usual bladder training, medication, instills, cystistat, took part in some clinical trials along the way, and most recently botox, and nothing has worked. Its reassuring for me to read that you have tried the sacral nerve stimulation and it has actually worked - maybe I'm not destined to a lifetime of being tied to the toilet after all!

Please keep updating with how things are going, and I hope you are feeling better.
ModeratorKate

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Reply with quote  #47 
Hello Ladyshopper
Am so sorry, you did not receive a response in the OAB section.
Am pleased that you have read this thread,hopefully Jen will update shortly and give you some advice.

So often with this dis-ease, our symptoms confuse those trying to assist us,it is so frustrating , tiring and sometimes depressing, to have to do all the Trials and errors.

Do hope you get some relief soon.
Kind regards
Kate


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Moderator_Jen

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Reply with quote  #48 

Hi All

 

Sorry its been a while, but things have been very positive in one way but not great in another.

 

On the plus side the SNS has been amazing for resolving the voiding issues - i've gone from voiding 30 times+ a day to around 5/6 (well within normal limits)  Voiding is also much easier and I have no residual voiding either.  Recovering from the op itself wasn't too bad, although the insertion sire was pretty painful and tender, but after around 10 days this had calmed down.

 

Now the downside....

 Its pretty ironic, but since the voiding side has been resolved and my bladder is now functioning normally (and filling up) it has flared my IC up and i'm having a very difficult time with the pain.  I've spoken to my consultants about it and they think its because my bladder is now filling up that the IC inflammation is worse.  I have had to increase my pain medication and I am starting bladder instils again on Wednesday. 

 

The downside is that the last few times bladder instils have been tried they couldnt get the cathether (a symptom of fowlers) but hopefully this time things will be different and the instils will be a complete success. 



I really hope this doesn't come across as a negative post as the sns has been really successful and I haven't regretted having it fitted for a second.  The complication for me is that I have the 2 conditions (fowlers and IC) that are working against each other.  When I suffered from the frequency it actually protected my bladder to a point because the bladder never filled up past 80 mls.  Now that my bladder actually fills up (can now void around 300mls - almost 4 times the amount my bladder would previously hold) the bladder is now severely irritated because its filling up- thus causing the increase in pain. 


One positive is that despite the pain I have been able to resume a physical relationship with my husband.  Prior to the SNS being fitted sex had been extremely pain and near on impossible.  Since SNS has been implanted intercourse has been pain free and my hubby is a very happy bunny (he thinks my consultant should be given a sainthood!!!) This unexpected but much appreciated bonus has been amazing for hubby and I and it has brought us much closer together and I'm very grateful for this unexpected bonus. 


My advice to anybody suffering from frequency who is offered this procedure is - GO FOR IT - it has been life changing for me in some ways and I am sure that when my IC is under control I will the feel the full benefits of the SNS - I think there is more positive results to come once the IC is stable. 


If anybody wants further info or wants to talk to someone whose 'been there - done that' then I'm very happy to chat further.  Just drop me an email and I'll happily help in anyway I can 


I just want to also pass on and publicly thank you all (and especially Kate, Dawn, all at COB and Anita) for the wonderful support, kindness and get well wishes you have given me - it has been very much appreciated and has really helped me cope - thank you all so very very much 


Xxxx


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Ladyshopper

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Reply with quote  #49 

Thanks for the update. Sorry to hear your IC is now playing up, but it is wonderul to hear that the frequency issues appear to have been sorted out, as that is what I suffer from, and am also hoping to have this treatment.

Moderator_Jen

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Reply with quote  #50 

It has completely resolved all the frequency issues, in that respect my bladder is functioning well within normal parameters. 

 

If your main concern is frequency then this is possibly the best treatment there is available and when it works amazingly well for a very long time. 

 

Good luck - please keep us updated on how things progress for you - I will be sending positive thoughts your way xx


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Ladyshopper

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Reply with quote  #51 
Been to see the consultant today, and now booked in for this procedure. Guide wire and external battery pack being done November, then if it works the implant being done in December.

Are you still finding it a positive thing?
Moderator_Jen

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Reply with quote  #52 
Yes, it has really helped my voiding and it has also meant that they have been able to catherise me, which means i have been able to have bladder instils which has helped get my IC under control too.

I believe the SNS is the best thing i could have ever done to help my fowlers syndrome symptoms and i wish you the very best of luck xx

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Moderator_Jen

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Reply with quote  #53 
I realised I haven't updated in a while, so thought a quick post might help those following this thread.

The SNS is amazing and is still going strong and has sorted my frequency completely.

The SNS was a breakthough for me and it has opened a lot of options to me in the way of treatments for the IC.

I am able to be catherised for bladder instils and this has been very effective for my IC and has helped calm the IC down.

I am still in pain, but it is manageable with the pain killers I take and I have been feeling very well both emotionally and physically.  Before the SNS i always felt on the verve of being ill or coming down with something, i have very little engery and never felt that strong and was often on the verve of tears and unable to cope emotionally.

For the past 6 weeks things have been copmpletely different  - I have more engery and feel so strong both emotionally and physically.  everyone at work and my specialist nurse say that for the first time in years i look well.  They have said that looking back on how I physically looked at the beginning for the year, they didn't realise how ill i actually was and how the progress I have made is amazing.  They say it looks like the weight of the world has been lifted from my shoulders and I look happy and healthly - which i am!!! 

That said the wheels have fallen off slightly and I'm going through a flare at the moment, but i am upright and coping, which is so different from previosuly when I went through a flare.  In the past I would have been signed off work and forced to bed rest and live in a haze of pain medication until things iomproved. 

During this flare I am still able to work full time and although i've had to temporarily increase my pain relief I feel i'm in comtrol, rather then my IC controlling me.  I don't feel ill, just in pain - which is an unbelievably huge step forward for me

I have also just started taking prelief in the hope this helps calms things down.  I am also looking at natural remedies and treatments to see if i can help calm things down.

My main objective now is get off the opiate based pain killers and get onto to a pain killer that is "safer" but I am taking this very very slowly andwill  see what happens and will go with the flow (no pun intended!!!)

I'm a positive person by nature (the glass is always have full for me!!) as personally, I believe a negative nature creates a negative outcome.  I always clung to the dream that I would get on top of the IC and Fowlers. 

Its been a very hard fight and I've had to really dig deep(and at times being tunnel visioned and stubborn) to keep going (especially when it comes to staying employed as at one time it started to look as i might not be able to continue working) I am so pleased that I stuck with it and now things are starting to work out the way I dreamt they would.  I know I have a challenge ahead of me but even if things do slip backwards I now know that feeling well is possible and its its happened once iot can and will happen again.

A lot of my progress can be attritubed to the amazing support from my medical team.  My specialist nurse is an angel withiut wings and i never could have come as far as i have without her support and care.  I also deeply appreciate the support and friendship from the wonderful people on this forum and the lovely COB office staff - I feel so blessed to have such wonderful support from you all.  Thank you all xxx


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JaneW

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Reply with quote  #54 
It's great that you stay so positive Jen despite the setbacks.I hope that this recent flare settles quickly.Love Jane XXX
Ladyshopper

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Reply with quote  #55 
Hi Jen

Just wondered how everything was? Is it still working for you?

I have had this done recently and sadly it didn't work (have done a thread elsewhere on the board), and it made me think of you. I am now left in the position of having to seriously consider the clam cystoplasty, which I was offered a few years ago and refused. Its a massive op, so will be a difficult decision to make.
clairefitz26

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Reply with quote  #56 
Quote:
Originally Posted by ModeratorJen
Hi All Well after the drama of last night my op finally happened!! The op itself took a couple of hours, and I came round in recovery really well and wasn't in any pain or feeling sick, which was a really big bonus!!! I have a huge padded dressing that goes from my right hip right over to the just past the side side of my coxes bone and is about 8 inches in depth. I can't see the electrodes at the moment as they are hidden in the dressing. As the day has gone on I've developed a bit of a headache but I was told that would be one of the side effects and it's manageable so it ok. I will get the sns unit tomorrow and they will turn it on and find the right settings. No news on when I will be discharged, but I will see how tomorrow goes and if things go well i will beg to be released ASAP!! All in all - things have been much better that I thought they would be and I'm looking forward to seeing what my little box of tricks can do to help reduce my pain and symptoms!!!


Hiya Jen,

I was wondering if you could help, advise, console in some way a very wrecked young woman........8 years of being told im a complete wack job.....to finally being seen in UCL and being diagnosed with fowlers.

Upon the diagnosis, they put in a suprapubic catheter....I cant self catheterise, cant seem to get it past the damn muscle.....so as I am retaining too much and having too many infections with a urethral catheter.....here we are....I am in belfast.....just so ya know......!

I have been home little over 6 weeks and within 3 days of returning got a nightmare bacteria called Pseudomonas in my wound infiltrating to my bladder........Sadly, ive had this bug before and it does not bugger off, last time it plagued me for 6 months before i cracked up and said, catheter out!  I dont really know if i have that choice now.......I need to be infection free and reduce my pain medication over the next 10 months, in order to start NM treatment pathway.............any help or advice?  I am close to breaking point.

Claire
Moderator_Jen

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Reply with quote  #57 
Hi Clare

I am so very sorry to hear about the difficult time you are having and i have to be honest i think you need to have a open and honest discussion with your medical team and see what they think is the way forward and what suggestions they have.

It sounds like you need to get on top of the infection before anything else can be considered - i'm wondering if a course of very strong IV anti botics might be the best way forward for you?

I have found the only pain relief that's been really effective for me is oxycontin and more recently tapentadol

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Moderator_Jen

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Reply with quote  #58 
Just thought i'd update as i haven't posted oon this thread for a while and its been a year since i've had the full unit fitted (wow how fast the time flies past!!)

MY SNS stopped working as effectively as it had been and my pre SNS symptoms starting coming back.  Obviously I started to panic and i had a very very bad flare that put me into retention which scared the wotsits out of me as we all thought the SNS had failed.

My medical team contacted the London specialist who fitted the SNS and they were very good and arranged an urgent appointment with the SNS specialist nurse within 4 days of asking for help.

All the way up to London I was in tears and couldn't help but think that they would tell ne i was beyond help and the implant would have to be removed.

At the appointment I was hooked up to the main computer (this was really fasinating and very interesting - I felt like it was someting out of star trek!!!) and it showed that actually the SNS was working too well!!!   What had happened that the when the full SNS was fitted the nerves in the bladder weren't responding so although they attached electrodes to those nerves they only turned on a couple of the electrodes that were further away from the bladder and were responding. The nerves that did respond were nearer the bowel but were also linked to the bladder, so they took a chance and set the programme to stimulate those nerves.

She explained it to me as the SNS being wired up to a tree trunk and off the trunk are branches and these branches have twigs coming off them. When the SNS was first fitted all that could be situmlated was the trunk, but the stimulation was good enough to get a response and help control my symptoms. As time as gone on the branches coming off the trunk have started to respond and awaken and as each branch and in turn has awaken the twigs which are now starting to respond (hope you are still with me and haven't nodded off!!!)

Over the past year the SNS has helped stiumlate the nerves that were "dead" previously and now the nerves nearer to my my bladder are starting to respond and so when she connected the SNS up to the computer she started to get a response from the nerves that previously failed to respond.  The specialist nurse explained that this was really fabulous progress and one they were hoping might happen, but then never told me about any of this as they didn't want to raise my hopes.

The specialist nurse was able to turn these electrodes on and we tried various different programmes on the SNS and managed to stimulate some of the nerves closer to the bladder.  This was a really strange experience and i could feel different parts of my body (bladder, urethera, bowel and even the muscles in my thighs, legs and back!) being stitumlated dependant upon the strength and type of signal.

In the end the nurse and I agreed on a cycle programme was the best option for me - this means that the stimulation comes and goes in waves of increased and deceased signal strength although I don't feel the stimulation unless i sit in a certain position.  Previously the signal was at a constant level and recent research has shown them that a cycle programme produces far better results.  The Nurse also gave me a couple of different programme so i can change them around of i'm having a bad day and feel things are not working so well I can switch prgrammes.

If things start to slide downwards and the symptoms come back then i will need to go back and we will re programme the SNS again.  Its very possible that I may require regular re programming and this is good as it means things are going the way we all hoped they would.  The end goal is that the SNS will get all the nerves responding and we might even be able to control/reduce my pain levels, but we are a long way off this.

As my pain is sadly very much an issue at present and my local pain team have been nothing short of amazing and so supportive,  They have suggested I try another spinal nerve block (higher up the spine than the previous nerve blocks i've had as the SNS is in the place where the last nerve block was adminstered) and its hoped this will reduce some (or possibly all, but I'll settle for any improvement in the pain department!) of the pain.  I'm having this done at my local hospital on 22 April 2013

I really hope I haven't bored anybody and this might be of help. xx

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ModeratorKate

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Reply with quote  #59 
Hi Jen
What an informative update, am sure this thread will really assist anyone considering SNS.( I have it bookmarked for referral CHOL
Am so pleased you are having success and the nerves are being stimulated, amazing technology.

Let us hope that as you travel further down this route, that the pain will be managed.

Take care.
kate







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Ladyshopper

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Reply with quote  #60 
Glad to hear it hadn't failed and they got it back working again. Just out of interest, was the hospital in London University College Hospital? Thats where I go, and the SNS nurse is great.

I've got video urodynamics to look forward to next week, then an appointment on 6th May where I will find out if they definitely going to do the clam cystoplasty operation on me. Scary stuff.
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