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Sophs50522

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Posts: 92
Reply with quote  #16 
Thank you Jane. That's really good to know. Sounds positive.
I went out for a Chinese last night and the only drinks I had a choice from was alcohol, fizzy pop orange juice. I opted to trial orange juice to see if it would infact make my symptoms worse.. well i had 3 glasses of it and if anything my bladder seems better last night and today than it did a few days ago.
Really stumped with it all to be honest.
Just going to have to ride it out and wait till I see the prof. Cant help but think I may just have an irritable/overactive bladder now after orange juice not even changing any thing.
We will see though.
I will update you all once I have been seen! :) thank you all again
Xx
Annabel1979

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Posts: 44
Reply with quote  #17 
HI there.. So I saw the prof a couple of weeks and ago and he was so lovely!

He didnt find bacteria, but he said that it could be really hidden and also i drank too much water (oops my bad!).

Anyway he put me on Hiprex, which I had heard of before. So far so good.. the pain and frequency has gone down.. as has the pain after sex. And no worry of getting a UTI, yeah!!

I had a weekend in Germany last weekend with my boyfriend and drank lots of wine and no pain at all! Bit of a relapse this week as got super stressed with a work situ - so think my pelvic floor might have gone into spasm, but not as bad as it was before.  But in the whole def an improvement. Keep you posted!

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Annabel fox
Sophs50522

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Posts: 92
Reply with quote  #18 
Hey, that's really good news. Glad your on the road to recovery. I dont see the prof till June and it can't come quick enough [frown] I dont even get pain. It's so weird. I just get a constant urge. Not sure if its OAB other than infection because I drank orange and passion fruit j2o other day and I had a really good few days and surely that should irritate me ? Weird. I am hoping he puts me on hiprex instead of anti biotics if there is bacteria because ive got ear problems and they cause terrible hearing damage if used long term.
Xx
KJW

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Posts: 22
Reply with quote  #19 
Hi, Your stories sound similar to mine! I've been told I've got a chronic UTI and I've had it for over a year now.  I never have any burning, but have constant urges to wee, and lots of bladder irritation, but only ever had white blood cells show up on the odd test here and there out of at least 15 dipstick tests I've had!.  It seems to come in waves, some days are OK and others are hard work (especially as I have to cycle to work!!). I'm on low dose long term antibiotics and amitriptyline for pain relief, but not sure how much they're helping, so I'm seeing the Prof at the end of May.  Hope everything goes OK for you all.
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Kirsty 
Sophs50522

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Posts: 92
Reply with quote  #20 
Hey kjw, sorry to hear your suffering the same problem, how did you get a diagnosis of a chronic uti may I ask? I've never had anyone mention I have white blood cells but doctor have said no infection every time he checked my urine and cultures are clear as well with no traces of blood.
Mine defo comes in waves. Right now it's really really mild and I can ignore it. Tomorrow will be a different story! Just can't get my head around it. I've had it since start of December. Really frustrating.
I see the prof the beginning of June so not long after you. You will have to update us how you get on x
KJW

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Posts: 22
Reply with quote  #21 
Hi again, a few, maybe three, of the dipstick tests showed raised white blood cells, but still very low, and nothing on the cultures. I also think I drank loads to flush it out so nothing showed on other tests or it it was so low grade they couldn’t see anything maybe? Not too sure. I then had an ultrasound which showed I wasn’t emptying properly so had to go down the whole urodynamics, cystoscopy route with a urologist to work out why my bladder wasn’t working and the cystoscopy showed damage to my bladder wall similar to a infected bladder. However he only did this because of the voiding problem which I actually now think is partly the infection and partly me not liking to wee on demand! Anyhow he thinks it’s a chronic uti now. I think the prof will give you the best advice, I note from somewhere he thinks urodynamics and cystoscopies aren’t always helpful for diagnosing chronic UTI and might make things worse? Mine also has no rhyme or reason behind it and I can’t see any pattern. Sorry for the long winded story.....I agree I too never know what the next day will bring, but I know I’ll get through it and fingers crossed for our appointments!!!

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Kirsty 
Sophs50522

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Posts: 92
Reply with quote  #22 
Ah that's really strange isn't it, I've only ever had 2 uti's in my lifetime so i find it very odd that I could possibly have a chronic one. All I can think of is that I've been under alot of stress lately and that's just lowered my immunity, who knows ?! How did yours start ?
I had an ultrasound which declared that I was emptying properly and gave the all clear.
I agree though I definatly won't be getting a cysto done until I've trialed every method going first.
How long have you been on the antibiotics for now ?how long do you have to take them for ? Sorry for all the questions lol
I know the prof would do the same thing but a higher dose I think ?
Such a long winded process to get to the bottom of it isn't it.
I'd much rather have a sore back or something other than a sore bladder [frown].


Annabel1979

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Posts: 44
Reply with quote  #23 
Hey there
Not an antibiotics, am on Hiprex (a urinary antiseptic)... have been taking it for nearly three weeks and it's pretty much eradicated my symptoms.

I have had a lot of UTIs over thee years BUT all the tests for the pain over the past 8 months were coming back negative. The prof reckons a previous infection got buried and stress makes the cells wiggle around and the bacteria come out.

Anyway good luck with your appoint!

Annabel

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Annabel fox
KJW

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Posts: 22
Reply with quote  #24 
Hi Annabel and Sophs,

Ive had cystitis on and off over the years but managed to get rid of it by short course antibiotics or flushing it out with loads of water, but this one has stuck! It started after I had a smear test, the nurse said I had vaginal atrophy which is more usual in post menopausal women (I was 42) so she sent me to the GP, who did an internal exam which set the cystitis off again and it hasn't gone since.  I then got a bit anxious about the whole thing and didn't sleep so that made it worse too, but I've got over that now and have come to terms with the fact it is something that I'm not going to get rid of quickly.

I'm on a low dose six month course of antibiotics, but maybe this will change when I see the prof, I'll let you know.  I think they might be helping a little, as the good days in between the bad days seem a bit easier.  However the Bladder Health UK has been really really great, I'm so glad I found it. and I am definitely going to sell all my raffle tickets!

Good luck with everything!

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Kirsty 
Sophs50522

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Posts: 92
Reply with quote  #25 
Hey Annabel, that's really good news, I was really worrying about the thought of needing antibiotics long term but knowing that hiprex worked for you maybe it could for me too ( if there is an infection ). I Really wish i could just have a glass of wine again one day.
I will update you once I have seen the prof and let you know how I got on :).

Hey KJW. I can't believe just one bout of cystitis can just set off a chronic uti. Must be so frustrating. Did you test positive for infection with that infection too?
I've had two uti's in my lifetime and they have both felt much worse than this. Burning during urination etc mine just feels really mild with the odd day of strong urges. I never tested positive to begin with,the doctor just told me it's prob interstitial cystitis or oab but highly unlikely IC as it's usually common in patients with chronic bladder infections most of their life. Suppose doctors don't really know much about the bladder though do they.
Let me know how you get on in May.
Speak soon.

Annabel1979

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Posts: 44
Reply with quote  #26 
Yes good luck with the prof. He thinks the cystitis diet is rubbish so at least you can eat amd drink what you want. Makes everything a little less miserable. Good luck! Xxx
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Annabel fox
Sophs50522

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Posts: 92
Reply with quote  #27 
Oh really, that's good as i agree with him there, it is rubbish. I can have a hot curry, load of chocolate and sweets and I can have a good 3 days after doing so.
Thank you. Will Speak soon xx
Annabel1979

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Posts: 44
Reply with quote  #28 
I feel better after LOADS of wine.. think its all stress and hidden bacteria xx
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Annabel fox
L8tti_x

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Posts: 33
Reply with quote  #29 
One random UTI set mine off too.

I had never had one before in my life then all of a sudden I had a permanent one.

I'm not an advocate of the diet either... I did it strictly for 3 months and there was no change what so ever. Bad days, really bad days and unbearable days. The nature of this infection is that symptoms seem to peak and trough so I think people link their painful days to what they ate yesterday when in fact it was going to be a painful day anyway, no matter what you ate!

The prof has got me symptom free but it has taken time and I'm still not clear of white cells.

I've just got to hold the faith.

Good luck everyone x


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Lotti
Sophs50522

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Posts: 92
Reply with quote  #30 
Oh that's really strange isn't it, how just one UTI can lead to a chronic one. I think it must be down to a weakened immune system.
I am really liking all these symptoms free stories. Really perking me up, I don't care if i have to take medication for rest of my life as long as it clears my symptoms and I can lead a normal life then that's good enough. I can't socialize at all on nights out with just water. I think alcohol being a diuretic makes my symptoms worse. I haven't tried still wine yet only carbonated wine and beers and cider. I'm fine with orange juice funny enough and all other juices. My symptoms today have completely gone and I know it's tmi but first time I had sexual intercourse last night with no pain in the uretha. Felt absolutely normal.
Roll on June.
Thanks for all your advice everyone. I'm really grateful for such a supportive forum xx
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