intestitial cystitis - anyone got this too?

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intestitial cystitis - anyone got this too?

Postby honeypots03 » Fri Sep 28, 2012 1:09 am

hi.im waiting on tests to look into my bladder to see if i have this condition. i only discovered this conditions name when i was looking up what my new diagnosis of fibro involved.i had all these symptoms and pains and even had an investorgatory laproscopy which came up with nothing and the surgeons drew a blank and discharged me.but i knew this was not phantom pain! thru many google searching i found nothing until i read up on fibro and there in black and white was interstitial cystitis which was exactly what symptoms i was suffering from.its listed as very common amongst fibro sufferers. i went to my gp and have been referred to a uroligist. i wud luv to hear from others who along with fibro also have this very painful condition and any tips or advice u can pass onto me i wud be so very grateful.

jenny
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Re: intestitial cystitis - anyone got this too?

Postby seabreeze » Mon Oct 01, 2012 4:25 pm

So sorry you have this, I suffer with it too, the best thing is to drink lots and lots of water, also lemon barley water and cranberry juice.Try to lay off alcohol and sweet things, mine comes and goes, so hopefully yours won't last too long, if you get a fever and feel faint (as I did once) go straight to you GP or emergency room at your hospital, they will put you on antibiotics as there will almost be an infection there too, do not neglect it at any cost, it's a miserable condition that is part of Fibro, I hope you get on top of it and feel better soon .
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Re: intestitial cystitis - anyone got this too?

Postby honeypots03 » Mon Oct 01, 2012 4:37 pm

Thank you seabreze.sorry u got it too.ontop of evetything else we suffer too! Cranberry juice i find too acidic but blueberry juice is great and it reduces the acid in urine so less pain-sometimes! I drink half glass blueberry juice and drink with half glass water added.alcohol and fizzy drinks are bad for it.too late wen u drunk it u know u gonna be in pain half hour later.it sucks doesnt it?!! Lovely to hear from you.hugs
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Re: intestitial cystitis - anyone got this too?

Postby Morgana » Tue Oct 16, 2012 6:49 pm

I have it; my sympathies to you. Avoid cranberry juice, lining of the bladder is damaged and doesn't like it

Mo x
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Re: intestitial cystitis - anyone got this too?

Postby Jag » Fri Nov 02, 2012 11:51 am

I am a sufferer too so you have my sympathies. Have only just realised that it is to do with fibro. would be glad of any other tips and helps to manage this. Just finishing yet another course of anti-biotics!
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intestitial cystitis - anyone got this too?

Postby Lyssie » Sat Dec 01, 2012 10:05 am

I have a few friends with IC (I have bladder problems and on the waiting lists for various procedures, bladder surgery. I don't personally have IC). I'm sending so many hugs xxx
Lyssie :-) ...xX
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intestitial cystitis - anyone got this too?

Postby Morgana » Sat Dec 01, 2012 11:22 am

Google the COB Foundation - they give advice and help

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Re: intestitial cystitis - anyone got this too?

Postby positivethinker » Mon Jan 07, 2013 8:27 pm

I have suffered with IC for several years and the pain can be excrutiating at times. You may need to take a low dose anti-biotic every day. I used to take Trimethoprim daily for quite a few years, but I had to change to Nitrofurantoin when the Trimethoprim became ineffective. I dread the return of the pains in my bladder and urethra and I've learned the hard way that I need to drink plenty of fluid, ideally just water or water with a suitable fruit flavouring like cranberry or suchlike, but as you say some can be too acidic so it is a case of trying different ones. Also be careful with ibuprofen and some other anti-inflammatories that you might be using for your fibro pain as they can irritate the urine tract. Naproxen tends to be one of the better ones I think but I believe it is only available on prescription. Do you take amitriptyline for your fibro? If not maybe you could speak to your GP as it is a drug that also helps with nerve pain and this can be helpful for IC.
I genuinely feel sorry for IC sufferers who haven't found a suitable regime because I know how horrendous it can be. I hope you find the right help soon.
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Re: intestitial cystitis - anyone got this too?

Postby elfval » Fri Jan 11, 2013 2:51 pm

HI!

So sorry for the pain you are going through it is one of my most hated symptoms :(

I was used to having cystitis and having it clear up quite quickly with antibiotics so when i started having it that wouldnt go away, and no bacteria present in tests it was awful.

Eventually a few years ago i had it constantly for about 9 months :cry: the doctor diagnosed an inflamed urethra. The whole area hurt so much that I began to think it was a condition called vulvodnynia (this was well before my fibro diagnosis)

After having it for 6 months I had an operation called urethal dilation to stretch my urethra. It did start getting better after that, but slowly and I think it was naturally going anyway, as fibro symtoms do, appearing and dissapearing seemingly with no reason at all.

It has left me with what i think is an irritible bladder, i have to be very careful not to wee untill I really need to or i irritate it and want to go every 5 mins. I cant leave it for too long when i want to go either. When i accidently go too soon i then have to do 'bladder training' which is basicly leaving it for a little bit longer each time (which is agony as you know!) untill im only going every 2 - 3 hrs.

When it was at its worst i found an ice pack wrapped in a flannel very soothing, and if going to the toilet is way too painful then sitting in a bath of warm water and going in there (I know it sounds awful!) greatly reduces the pain :oops:

I hope you have found something that works for you!
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