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Karen60

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Posts: 29
Reply with quote  #1 
Hi
I saw the urologist on thurs and he has said he can't see there's anything wrong with me!! Everything has come back ok,he said there was a growth on my left kidney but it was nothing to worry about.i have to go back in 6 months but howcan I go on like this for 6 months???
I feel all the time I am getting a uti,I'm sore down below and have pressure on my bladder all the time,I don't want to go out and do anything and my husband is getting fed up with it!! I have already eliminated all the bad things from my diet and am taking D mannose(which has helped)
All I want to do is cry as I don't want to go on like this.
Thanks
Karen

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K.reynolds
Loobyloo

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Posts: 40
Reply with quote  #2 

I would pay for a private urine test (available online, travel and drop off at London lab)  and ask for a longer culture and reporting of WBCs and bacterial counts under the normal 'guidelines'.  Eliminate any infection with a longer course of antibiotics.  Go privately if necessary.  Hiprex and Ovestin with daily antibiotic will help thereafter, although some people feel that low doses are detrimental.  It always worked for me.  UK GPs are very governed by prescribing guidelines and this is not the case in some other European countries where a doctor can prescribe other antibiotics/longer courses.  You cannot live like this.

Karen60

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Reply with quote  #3 
Thanks loppylou
I live in Dover Kent so bit unsure how I would get a urine test done privately.
Would I need to stop the D mannose before I do a test if so how long would I need to stop taking it?
Today I'm so bad just can't stop going to the toilet but am so sore during and after!! My life is ruined by this and can't see light at the end of the tunnel.
Karen

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Loobyloo

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Posts: 40
Reply with quote  #4 
D-mannose will not affect the test.  It also only helps with E-coli with limited evidence or one or two other strains.  It is much publicised but there is not enough emphasis on how limited its use is with complicated cystitis and other pathogens.  As you become older, UTIs are often caused by other bugs, Klebsiella, Enterobacter, Enteroccocus, Pseudomonas. It may be a low level infection.
You say your life is ruined but if you cannot go to London then I guess you have no choice but to stick with your local medical care. Thats your simple answer. I also do not know if this would solve your problem but its a start.  I have sometimes had to do several tests.
I know its hard, but you have to decide how much it is worth to you to get on a train and go to the lab in London. You order the test online, make your special requests re. culture time etc, print off the order/receipt and go to the reception of the lab.  Do a pee, hand it in, get results online. If necessary go to a private urogynae with the results.
I travel to Europe to purchase my own antibiotics and see a doctor now and again.  I am not very young and have another major health condition.  I am not advocating this for you, but tell you so that you can understand the extent to which we have to be our own doctor and take our fate into our own hands at times.  
I once had a female GP who told me I would be better off getting wider antibiotic choice abroad as they have less stringent guidelines.  
There is much doom and gloom about resistance but if there is an infection, it must be treated.  Properly.  It has been documented that short courses are no good.  Resistance is apparently created by this, and using antibiotics unnecessarily for viruses.   However, I am not a doctor and you must verify your own research.  
I do not like to give too much help online but I can only give you benefit of my own experience, some 45 years.  Personally, I am not sure the alternative remedies help, having tried them all, but good diet is important and there is some evidence that anti-histamines or ranitidine (zantac) will damp down the inflammatory response.  Even paracetamol.   I reiterate that Ovestin for urogenital health is a good choice but there can be implications (check with your GP).  
Good luck.
Karen60

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Posts: 29
Reply with quote  #5 
Thanks looplou
Do you have antibiotics all the time? Are the ones you have available here? All the antibiotics I've had are for 3-5 days and seem to work for a while,I was told at my Drs they wouldn't give me anymore antibiotics but the urologist said if no improvement in 6 months then he would think about long term antibiotics!!! I just don't know what to do,we are members of a health insurance and was seeing if my dr would refer me.can I ask where do you go to see your urologist and get antibiotics?
I'm hoping to see my go on tues and ask for a better urine test but I don't really know what to ask for.i was thinking I could have an imbedded infection!!
I'm lucky enough to be retired but don't have a lot of money so need to do things cheaply!!! Mind you I have spent out on d mannose and various other things!!

It seems with me that it could be related to bowel probs!!! I only eveer empty my bowels every 4 days then when I do I often think it's not properly empty and often then I feel I have an infection!!!
Do you live a normal life now or do you still get problems?i find it very hard to do anything and with grandchildren I look after makes me very nervous and anxious in case I'm ill.
Thanks for any advice I really do appreciate it
Karen

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Loobyloo

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Posts: 40
Reply with quote  #6 
I think the office may have some good advice for you re. bowels, probiotics, doctors and where to do tests.
Refer via insurance if possible.
Find the money if possible, small economies.  Health costs money.  Its Number 1 over all else.  In the Uk we are lucky, but I see the NHS as a safety net.


Karen60

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Posts: 29
Reply with quote  #7 
Do I need to join before I can get advice? I'm going to speak to the doc on tues and ask for further testing on my urine and tell him I want to be referred to benneden,I know they have urologists there and hopefully one that can help.thanks for your advice loobyloo.
Are you free from ic with being on antibiotics? There's so much to take in and everyone's different,sometimes it's overwhelming.
Karen

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K.reynolds
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