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Jane_B

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Reply with quote  #31 
I’m so grateful too, it has really been cheering me up reading this as I had a bit of a stress related flare recently. I don’t think diet makes a difference either apart from Americanos. The prof as the others have said doesn’t think it plays a part. Does anyone find that theirs is massively affected by stress? When I’m on holiday I always feel good but sometimes with a stressful situation I can feel my bladder start to ache immediately. At other times it’s delayed. L8tti can I ask how long you’ve been seeing the prof? I have been seeing him since Oct 2016 and hopeful to start stripping antib’s back in summer he says. Thanks everyone. Jane x
L8tti_x

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Reply with quote  #32 
Hi Jane

I have been seeing prof since July 2016. He has supported me through a pregnancy too.

I'm hopeful to come off the abs soon but every couple of months I get a little reminder that the infection is still there (thankfully the pain is nowhere near the level it was). My white cell count is very low but it is being persistent.

Personally for me I don't feel stress is a trigger; I can't make any link to why some days are more painful than others. It's so random!


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Lotti
Annabel1979

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Reply with quote  #33 
Stress is a major cause.. think everyone agrees with that. But the prof reckons that stress causes the hidden bacteria to shake up and come out again. And im the same.. can eat and drink whatever i want but coffees are a iffy as they cause spasms. Honestly cant rave about hiprex enough. Still have a bit of uncomfortable symptoms and slight irritation after i pee sometimes but its def on the way out. It used to really hurt when i pressed on my bladder but no longer. Also i go to the toilet like a normal person rather than every 20 mins. Do you do yoga etc? Found that was the only thing that helped befoee this treatment x
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Annabel fox
Annabel1979

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Reply with quote  #34 
The other thing is worth looking at is pelvic floor dysfunction.. hard to know which the pain is stemming from but i had an ultra sound that identified i had a tense pelvic floor and when i feel pain i can kidn of feel what side it os now. Some excercises with a physio helped. PFD can cause bladder pelvis and vaginal pain and docs have no idea. I had a vagina massage. That was a new one! There is a great place in Barnes you can google
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Annabel fox
L8tti_x

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Posts: 33
Reply with quote  #35 
I can honestly say stress is not a factor for me. My baby son was investigated for a brain tumour last month and my bladder didn't twinge at all even though it was one of the most distressing times of my life.

Just goes to show we are all different. Our bladder our rules. I don't think there is a one size fits all cure unfortunately.


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Lotti
Annabel1979

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Reply with quote  #36 
Yes you are right. Baffling and horrible condition. Hope all ok with your son x
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Annabel fox
Sophs50522

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Reply with quote  #37 
I don't find stress a factor either to be honest .. But could be the tension of your pelvic floor rather than the bladder may be ?
I cant believe you have all be on antibiotics for that long [redface]. This clearly isn't a quick fix is it.
I thought 6 months would be enough. Arrhh. Scary stuff.
Xx
Sophs50522

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Reply with quote  #38 
L8tti.. it's nice to hear you've had a pregnancy amongst all of this. That just shows that you can lead a normal life now with the right treatment. I have a 4 year old and a 1 year old and I couldn't think of anything worse having another baby with this problem [frown]
L8tti_x

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Reply with quote  #39 
It is scary to be on antibiotics that long; I try not to think about it too much. Prof always says it takes dogged persistence.

I'm choosing quality of life right now. I was housebound with pain before I started treatment so I don't feel I really have a choice.

Ho hum x

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Lotti
Annabel1979

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Posts: 44
Reply with quote  #40 
I agree. Im not at the antibiotics stage yet but my friend was horrified when i told her his treatments. But what ya gonna do? Until you have lives throigh this pain you dont understand
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Annabel fox
Jane_B

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Reply with quote  #41 
Yes the stress thing goes to show everyone’s different as you say. I’m sorry to hear about your son L8tti and I hope everything is ok.
It is hard when you explain about the antibiotics to some people but it’s impossible to communicate how debilitating you feel with this. I remember saying to my mum when it was at its worst that I’d lose a finger or just eat apples forever if it could go away! Now I’m much better than that since seeing the prof. Soph it could just be 6 months for you - I think you’ll feel reassured when you see him. He’s so experienced and kind. Yes I do yoga and Pilates Annabel and find it really helps. I was seeing a pelvic floor physio M.E. In town but I might try the Barnes place. Thank you for the info x
Annabel1979

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Posts: 44
Reply with quote  #42 
Did anyone try hiprex first out of interest or were you too far gone for that?
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Annabel fox
Jane_B

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Reply with quote  #43 
I’m on hiprex as well as the antibiotics but am coming off it next month as we are trying for a baby no 2 x
Annabel1979

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Posts: 44
Reply with quote  #44 
Good luck!!! :)
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Annabel fox
Jane_B

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Posts: 21
Reply with quote  #45 
Thank you! My best friend who’s got the same and is seeing the prof just told me about a Twitter moment this morning where women (and a few men) were calling out their docs for not listening to them in the early stages - seems it’s v common. If you are on twitter search “uti” and the first post by Mira Gonzales is the beginning of the thread
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