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Lau212015

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Posts: 7
Reply with quote  #1 
Hi everyone,
I have had ic for nearly ten years now and would like to know if it just gets progressively worse.
I have remission and relapse . The last period of remission being 7 months but now have been in a 3 week flare.
I am a single parent and am due back to work tomorrow after Easter break but just don’t see how I can go but am worried about losing my job.
I am sat here jUst worrying about my future and feeling very scared.
I have been referred to a urologist again but the last one was rubbish and am not holding much faith that things will be different.
I am going to see the prof in July but I still don’t know if it is an embedded infection or not, although this started after a uti.

I’ve read he thinks all ic is infection which concerns me because the medical community as a whole don’t!
Anyway, some advice and kind words is very much needed at the moment!
Thank you,
Laura.
ModeratorKate

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Posts: 1,760
Reply with quote  #2 
Hello Laura
Sorry no one has felt able to respond.

Bless you worrying, is only going to make you worse, a favourite saying which is not easy, but the mind does honestly play tricks.
" What is in the past is gone and you cannot alter.
  What is in the Future is unknown and you cannot pre empt.
  BUTT what is happening NOW is all that is important, and you deal with as best you can"

We are all different and react different, so what works for one will be an absolute nightmare for someone else, It is so upsetting when the Medical person you see, does not give you confidence, and know that at least with the Prof, you will be listened to and treated personally, it may not be overnight, but you will be making progress.
Also ask his secretary to put you on the cancellation list, and be prepared to travel at short notice.

In the meantime , try to be positive and read some of the success stories on here,also do give the BHUK office a call, they are very understanding and have lots of good advice they can offer you.

I am sorry I cannot wave a magic wand, but we will always assist and always listen, as we truly understand.

Take care and hope this is little help.

Kind regards
Kate



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sueworld2003

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Reply with quote  #3 
Quote:
I’ve read he thinks all ic is infection which concerns me because the medical community as a whole don’t! 


And neither do I so I'd be concerned too. Nobody can say for a 100 per cent what IC is as IC is an umbrella name for a whole host of bladder related issues. For some it may be auto immune and for others embedded bacteria.

So anyone making blanket statements like that is just being arrogant imo.

You've probably heard all this before but have you worked out If you have any triggers at all? Food etc? Have you tried a low histamine/high alkaline diet for a bit?
Did any meds do any good at all?

I've had IC since 2004 and nothing except diet seems to help curb things. But thats getting increasing hard to do for as the years have gone on other health issues have added to the pile .
Lau212015

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Posts: 7
Reply with quote  #4 
Hi Sue and thanks for getting back to me.
I’ve never found a trigger with food or drink.
I always go back to eating safe foods when I have a flare though just because I think it’s better to not do anything that will further aggravate an already inflamed bladder but I still cannot make any link.
Everything irritates me when I’m bad-even water and when the flare passes I eat normally again . This also confuses me greatly as my last flare was over 7 months ago and in between I ate and drank what I liked and nothing bothered me! It just makes no sense whatsoever!
The only trigger I have found is sex. My fiancé doesn’t understand why I’m now scared about intimacy because he said that I don’t get it every time but I said to him that after spending the last two weeks in bed In agony and now off work again, I cannot believe why he doesn’t understand this.
So much so that the whole condition and how depressed I’ve been with my constant googling about the disease to find out if I’ll just progress and be like this all the time that it seems caused major problems between us now.
I’m also worried for my future as I’m on my own with my daughter and worried what would happen if I can’t work, although I keep telling myself that I actually am luckier than most to be asymtomatic in between flares and if anything the first 18months of having it back I 2009 were by far the worst as it was more frequent then after I contracted my first and only uti.
Sorry I’m rambling on but am just full of anxiety at the moment with it all,
I’ve also lost too much weight due to the diet which has caused my family some concern and then wonder why I’m bothering doing it anyway?!
Anyway I’m on amitriptyline, atarax and mirabegron and I know they take a while to work but am definitely much better physically than a week ago but just not mentally at the moment.
Any advice would be great!
Laura x
ModeratorKate

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Posts: 1,760
Reply with quote  #5 
Hello all

Chrissy has very kindly posted an update again to help those unfortunately starting on this dreadful road, or wondering if there will ever be an end.

Am sure it will inspire anyone reading ( Thanks for thinking of us Chrissy)

http://cobf.websitetoolbox.com/post/recovering-from-ic-bps-9719800?trail=15#1

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