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[jessieblue]

Hi ladies.  I have had a really bad few days with a uti and my anxiety.  I have severe health anxiety which started 10years ago with what I thought was a uti but turned out not to be...well as far as I know.  I then had an actual uti 2 years ago which sent me into freefall.  I ended up having tests and cystoscopy because I was so scared I had cancer or something.  This weekend I started feeling a bit odd down there, I get a lot of urinary symptoms anyway so tried to ignore it.  I had used some ovestin cream last week for a few days and noticed a burning after applying and then the uti symptoms started the next day.  I took a sample to the doctor today and asked for her to send to the lab but she refused.  Said I have to try a weeks antibiotic first,  So she gave me 5 days of trimethoprim and told me to take 3 if i felt better then.  I have taken the two tablets today and thought I felt better earlier with less urgency frequency and discomfort but tonight its stepped right up.  I am feeling the need to go all the time and getting more and more scared.  My anxiety is sky high and I am scared its not going to work and wont clear the infection.  I knw many people get utis so I was just hoping for some advice or reassurance.  I have been using d mannose YES moisturiser and being really careful with jygeine.  I drink a lot of water and I even had mona lisa touch laser.  So this is really bad for me as I know nothing has stopped me from getting the uti.  I feel at the mercy of it and that maybe its antibiotic resistant.  How do you cope with uti?  I mean how do you manage to keep going?  I literally am panicking, this triggers my anxiety so badly that today I actually feel like I dont want to go on any more.  I had struggled so hard to beat my anxiety and was doing so well........ I have been literally housebound for many months in the recent past.  So Im back to square 1 with nowhere to go and this sensation is building.  I dont know what to do my doctors are so unhelpful. xx

[jessieblue]

Hello Sparkle, yes my practice nurse dip tested the urine and there were leukocytes and nitrites in it so there is definitely an infection.  I have been given ovestin but cannot use it as it causes thrush.  They told me vagifem isnt easily available so I couldnt have it. So nothing else I can do but sit and suffer this.

[Jemp]

What rubbish! Vagifem is available and has made a great difference to me. Also avoid foods which make urine acidic especially soft drinks, white wines and coffee. A vegetarian diet is supposed to help too but haven't tried it yet. A year ago I was where you are and needed anti depressants before I could cope with the situation. Get the Vagifem!😠

[CLKD]

Your GP is very wrong  .   A UTI can ONLY be diagnosed with a sample sent to a Lab. to be grown.  Giving ABs is causing resistance all over the World.  I would be changing GPs.

Speak with a Pharmacist in your area, I take it you are in the UK?   Go to another Surgery and ask for Vagifem.  Send a PM to Dr Currie on here too so that you have advice from a Consultant in the know to take to the Surgery.

Also read the Mona Lisa thread on here?

[CLKD]

Let us know what you decide to do?

In the meantime, continue with the 'yes' etc. and do ask your Practice Nurse for help if you can't change Surgeries for advice.  Some Nurses know a lot more than the GPs they work with!! You can also look for a menopause clinic in your area or ask for referral to an appropriate dept. at the Hospital.

[CLKD]

   Jeaniewigs

[jessieblue]

Thank you all for your replies.  I heard today from the private gp service where I took my urine sample.  The doctor was wonderful, I have seen her before and she knew all about my history so had obviously read back my notes.  She said the sample grew no bugs.  There was a lot of pus but no specific bacteria.  She said there was many orgnisms but all within normal range but that that does not rule out UTI.  She agreed 3 days of trimeth was a nonsense for someone with my complicated history and is sending me a script for more trimeth and for vagifem.  She was stunned at how obstructive my surgery had been.  Hopefully I might be able to get on top of this with a bit of support from her.  She also said to run another test in a weeks time to see what it shows then.  This doctor also suffers herself with IC and has a history of complex utis.  Its good to speak with someone who gets it. I hope this helps keep infections at bay. Thank you all xx

[Maryjane]

Just for interest on new research coming through ,  pus equals bacteria equals a UTI regardless of results.

It is know known that labs Miss 50% of all infections in the lab , IC is an embedded infection called a bio-film in the bladder wall , being embedded therefore means it can't be detected on any cultures.

The only way to see what's going on properly , is a p sample and an immediate look down a microscope, the testing we do which is a very old system which was / is not fit for purpose and never was as it was for pregnant women and kidney infections not bladder , and the criteria of >10 which means anything under >10 is seen as “ normal “ anything from >11 is infection , well it doesn't take a genius to realise that >10 is actually infection and very often these low grade ones are the ones that become embedded and called “ IC”.

Having said all that , we need local oestrogen to keep the bladde as healthy as possible to try and keep the microbiome in our bladders in well balanced harmony , too try and keep infection at bay.

This is all such new evidence re UTIs / biofilms that it will take generations of mindset to be changed , but science keeps moving forward and I never will never trust a p sample again , have learnt and researched too much .

[CLKD]

   Maryjane.

Thanks for the update jessieblue - let us know how you get on.

[jessieblue]

Maryjane, thank you for posting the above.  It has frightened me a lot though because does this mean I will never get rid of the infection?  Does it respond to antibiotics at all?  I have such a fear of having a condition that isnt treatable and everything i read about IC and even chronic UTIs has terrified me because I never realised this condition couuld be so dangerous.  I assume that if it doesnt respond to antibiotics that it could lead to kidney infection sepsis etc??  And how do you go about getting a sample looked at immediately|?  I dont think there is anywhere that currently does that.  Does that mean I will  be denied treatment?  My private gp did say that the absence of bacteria didnt rule out infection and that if I have symptoms then she would treat me but i dont know about NHS.  I cannot afford to use private services all the time due to costs. I saw a urologist 2 years ago who didnt really do anything but say I could have an urethral dilation which might help.....but that wont help if the infection is already buried in there.  How can I find out what I need to be done?

[CLKD]

Did your private GP not explain completely what she meant?  I would go back and ask the question! although 1 should be able to see your GP.  A sample will not, under our current system, be tested the same day as it takes several days to 'grow' anything which is why there is a wait for results when a sample is sent to a Lab., that way the correct anti-biotic can be prescribed IF required.

[Maryjane]

Jessieblie this will help explain how an infection becomes undectable and why IC is just an umbrella term for we don't have a clue.

ATM their is one team who treats such infections on the NHS. Whittington hospital ( Professor James Malone -Lees team ) with thebhope one day of more clinics around the U.K..

We have to get past the “ gold standard “ for UTI testing it's pointless and a waste of money with hownitnis done currently , a negative test does NOT mean a neagative result .

I have seen this with my own Grand daughter, who after being admitted with a few hours from urinary sepsis had EVERY symptom of a UTI yet tests where negative, I let's say got persistent as she was extremely ill , within 24 hours of IV antibiotics ( would not respond to oral ) ALL symptoms went , she had cloudy P , very smelly P , screamed when Ping, held her kidneys , temperature of 40. This is a story repeated day in day out around the country, UTI testing as it stands is pointless.

Also a number of breakthrough discoveries are emerging that conditions such as chrons and other dieseases including cancer,  is that bacteria is linked .

I will add a really interesting video also . 😊

Problem is the medical “ establishment “ is very set in its ways , and they are not very good a putting there toes in the water .

http://www.chronicutiinfo.com/intro-key-info/a-picture-guide-to-the-evolution-of-a-chronic-uti/



https://youtu.be/aXFl_GGW7x8

[CLKD]

   Maryjane.

NHS won't try anything if it's going to cost money!  Also NICE 'guidelines' often come into play ..........

[Maryjane]

As a medical professional said too me the NHS is reactive not proactive regards health.

Which in the long run costs far more.

[jessieblue]

Im confused though....how do I know if I have this?  Surely we shouldnt be taking antibiotics longterm unless we really need them.  I dont know whether my problem is uti chronic embedded IC VA or anxiety.  I have bladder symptoms all the time and have only had 3 UTIs that were positive on tests.  I only had antibiotics 3 times too so how would it have gone away in between times without treatment?  Today I am out of my mind with panic.  I have the urgency feeling and I dont know if its real or in my head.  This is so hard.  Health anxiety makes everything worse and I was worried when I thought it was a normal easily treated UTI.  I had no idea of the horrors that surround this condition.  My doctors know nothing of this new protocol I can assure you and I tried to contact professor malone lee but the email just bounced back.  I think he may be retired.........where do I go from here because I feel a growing sense of urgency before I totally lose my mind.   Antibiotics make me so ill and I have emetophobia....thge thought of ongoing antibiotics is unbearable tbh. xx