Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: jessieblue on July 10, 2018, 11:08:02 PM

Title: UTI scared and dont think antibiotics are working.
Post by: jessieblue on July 10, 2018, 11:08:02 PM
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
Title: Re: UTI scared and dont think antibiotics are working.
Post by: jessieblue on July 11, 2018, 08:23:03 AM
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.
Title: Re: UTI scared and dont think antibiotics are working.
Post by: Jemp on July 11, 2018, 08:31:34 AM
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!😠
Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 11, 2018, 10:05:52 AM
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?

Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 11, 2018, 12:40:34 PM
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.
Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 11, 2018, 01:19:59 PM
 :thankyou:  Jeaniewigs
Title: Re: UTI scared and dont think antibiotics are working.
Post by: jessieblue on July 12, 2018, 07:56:51 PM
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
Title: Re: UTI scared and dont think antibiotics are working.
Post by: Maryjane on July 13, 2018, 05:25:57 AM
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 .
Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 13, 2018, 10:31:48 AM
 :thankyou:  Maryjane.

Thanks for the update jessieblue - let us know how you get on.
Title: Re: UTI scared and dont think antibiotics are working.
Post by: jessieblue on July 16, 2018, 11:42:55 AM
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?
Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 16, 2018, 09:26:10 PM
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.

Title: Re: UTI scared and dont think antibiotics are working.
Post by: Maryjane on July 17, 2018, 04:33:22 AM
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
Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 17, 2018, 09:27:35 AM
 :thankyou:  Maryjane.

NHS won't try anything if it's going to cost money!  Also NICE 'guidelines' often come into play ..........
Title: Re: UTI scared and dont think antibiotics are working.
Post by: Maryjane on July 17, 2018, 09:58:14 AM
As a medical professional said too me the NHS is reactive not proactive regards health.

Which in the long run costs far more.

Title: Re: UTI scared and dont think antibiotics are working.
Post by: jessieblue on July 17, 2018, 11:07:27 AM
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
Title: Re: UTI scared and dont think antibiotics are working.
Post by: Maryjane on July 17, 2018, 12:06:10 PM
I have an embedded UTI and manage it with HRT and vagifem helps a lot .

It's all very new technology and on the horizon , no long term antibiotics aren't good either .

Profs team are in a research programme which will involve treatment via a direct route into the bladder .

Prof has retired but has come back for a bit .

He can be seen privately.
Title: Re: UTI scared and dont think antibiotics are working.
Post by: jessieblue on July 17, 2018, 01:04:33 PM
Thank you so much jeaniewings and Maryjane.  I will read the book for sure.  You are right and I know my anxiety is sky high but today I have symptoms again of urgency and frequency.  A low backache too.  Im getting so panicky because I dont know if I should go back to the doctor or wait it out for a while.  I only finished the trimethoprim last night at 10pm, how could it have come back so quickly orr maybe its resistant to trimeth?  As nothing showed up on the MSU I have no clue as to what antibiotic would be effective.  I am taking d mannose probiotics and drinking lots of water.  I also ordered AZO from amazon which should come today.  I so worried I cannot cope with this.  I have beenfeeling suicidal with my anxiety and depression in the last year and I know it sounds like I am overreacting but I can feel the ground slipping from underneath me right now.  I still havent even received the prescription for vagifem yet, so still waiting on the post.
Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 17, 2018, 01:09:30 PM
Then you need to discuss your anxiety and depression with your GP or find out where your walk-in MIND drop in centre is, I found them very useful 2 years ago when a friend died suddenly and it impacted on m y mental health.

The AB you have been given is I believe one that covers many conditions?  You may be tense due to worry so try taking a pain relief medication, I find that helps me if I have aches and pains due to tension. 

Don't drink too much water!  The first P of the day may whiff and should be darker than the rest as the bladder hasn't been emptied as often.  Urine should remain straw coloured, any lighter and the body is over-hydrated.  There should be no smell during the day though mine often smells of sulphur or is simply smelly.  I have to keep an eye on it as I know that I don't drink enough. 

In the mean time keep the vagina as moist as possible, I use KY Jelly around the outer lips.  Some find 'yes' products or 'sylc' useful, if you put the products into the search box you may find something that will suit you.
Title: Re: UTI scared and dont think antibiotics are working.
Post by: jessieblue on July 17, 2018, 01:53:59 PM
Thank you CLKD.  I dont think we have a MIND drop in centre around here.  I did email them a while ago but never got a reply.  I have called the samaritans once too but they werent helpful, very nice and compassionate but of course, had no answers.  I have seen my GP and practice nurses on many occasions about my mental health bladder hormones nausea acid reflux etc.  Last week when I took my sample in I sat crying and shaking because I was in such an anxious state.  The nurse just told me it was a simple UTI and would clear up with the antibiotics.  I walked out with no mention of any help for my anxiety again.  I had counselling before and hypno and accupuncture and so many things but nothing has helped.  I get better but then another health issue raises its head and off I go again.  Its torturous to be honest and I feel so hooeless at the moment. I think the only thing left is for me to be admitted to a psychiatric unit and as you can imagine I would rather be dead than do that with all my fears.  I do use the YES products daily and they have been great at keeping things comfortable.  I dont have any vaginal discomfort these days its purely bladder symptoms currently.  To say I feel desperate is an understatement. xx
Title: Re: UTI scared and dont think antibiotics are working.
Post by: jessieblue on July 17, 2018, 03:20:46 PM
No I havent got the prescription for vagifem yet.  The private gp was posting it first class on Thusday but still havent received it. I will definitely give it a go when I finally get it.
Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 17, 2018, 10:17:11 PM
That would be my suggestion, give them a ring in case!

You were there for the bladder issues the mental health is a separate issue.  Maybe look on the surgery web-site to see if there is a mental health team attached to the Surgery?
Title: Re: UTI scared and dont think antibiotics are working.
Post by: greenECLECtus28 on July 18, 2018, 10:02:18 PM
I have been reading through your posts, I myself had constant issues with UTI last year and ended up in hospital because all GP did was just constantly prescribe various antibiotics. If you have very strong smelling urine or  have a temp and other symptoms of a UTI then you're GP should be sending off a sample to be cultured which will show whatever bugs may be present,  in my case it was an E-coli which is the most common but mine was resistant to all antibiotics except Nitrofurantion and Ciprofloaxin. I was eventually referred to a Urologist who after cultures put me on antibiotics for 6 months 3 months of Cipro and 3 months of Nitro he also prescribed Vagifem as well. The NICE guidelines are quite clear that if you have more than say 3 infections in a 2 month period then you should be refered  to a Urologist most GP,s do not have the experience or are aware of these guidelines experience has taught  me that you have to be pro
active in these times 😀 It's your health, you know your body I cannot believe if I'm reading your posts correctly that you have had to go to a private GP to get the help you need you need of that is the case you need to go back to your GP and demand a referral to a Urologist it's quite within your rights these people are specialists and will be able to help you further

Take care
Title: Re: UTI scared and dont think antibiotics are working.
Post by: CLKD on July 19, 2018, 09:25:09 AM
Tnx green ...........  :thankyou: