I thought many would be interested in this article about persistent symptoms of UTIs that may NOT be UTIS
Recurrent cystitis is not necessarily bacterial -... - PMRGCAuk
Recurrent cystitis is not necessarily bacterial - if recurrent abx fail there may be something else going on!
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I had definitely figured this out, the trouble is my GP surgery do not explore further once they have ruled out infection. Thank you for the post.
I thought the article might be helpful to brandish at such GPs!!!
Have you seen I PM'd you? I still don't get any notifications of PMs ...
Me nether. I’ll have a look and will brandish!
Nor me...
I have replied to your PM. ✔️
Your surgery is not the only one not to explore further on anything… believe me… They practice Box ticking medicine… easy for them, job done, forget it, move on… but patients do not get the much needed help. . .
I got a surprise from my GP on Monday, she requested to see me because my blood pressure had gone up. She noticed when walking I was losing my balance.....she took my blood pressure, it was 190/95......she took it with me standing up as well....no different. I asked if Fibro that I'm supposed to have would cause all this, dizziness as well, no.........she said I will refer you to Neurology, but first I want you to have an MRI brain scan!!....that came through two days later, it's booked for March 11th.....never had things move so quick.....don't know what to think, but I'm a great believer in ruling things out, to rule things in.......Fingers crossed....
Ooooh - something moved the mountain!!!!
Well that is definitely not how I and many people I know have experienced a GP’s care. Not the run of the mill … That’s very lucky indeed and I am pleased for you in the hope you can be helped very soon in feeling better. I wish I had such an efficient and caring GP. We need more of them, acting this way, doing a proper job of investigating and ruling out issues while treating existing problems. May I ask where this wonderful doctor works, which are, not specific surgery.? This points out the importance of seeing a GP face to face rather than their preferred method of a phone consultation. Having said that some GPs still would not be that concerned on seeing what a patient looks like… sadly. Wishing you the best.
I live in Norwich, my GP is a partner with another female in the surgery. ...have to say my GP hasn't always been so proactive. She has said over the years many times that steroids are poison......as I was leaving her surgery she said we must get you off pred!....to which I replied I feel so ill some days, I cannot face feeling worse when I lower.....she gave me a presciption for BP tablets, and a form to take my blood pressure at home....Thank You.....
Indeed anything for an easy life for them… box ticking… You were lucky she didn’t try to prescribe antidepressants… ! One of their to go remedy when they can’t be bothered to investigate…
They have it on screen I react badly to meds, she is starting me on half doses of BP meds because of it......have tried numerous drugs for Fibro, couldn't tolerate any, some were antidepressants to help me sleep......only meds for pain I take is two paracetamol before bed because they make me dizzier than I am now so dosen't matter if lyi ng down......room spins for ages before I stand up. I 'm such a delicate little flower.....not!
Try not to worry about the brain scan too much, my attitude is accept these mega expensive tests gratefully as a kind of insurance. I have something minor in my ascending proximal Aorta. I am now under regular monitoring. They would never have found it normally. I hope these latest tests lead to something that improves things for you all round. I am getting pretty relaxed about these investigations now. Mine have mostly been short lived drama, then back to the bottom of the pile. Let us know how you go. Xx
Thank you Jane for that, I have pretty much the same attitude as you, let’s get on with it! I am grateful for the tests available, my parents died at 51 and 66 no tests available to them. I will post how it goes and results. Hope things are easing for you xx
This reminded me of when I was in my 30’s, had this problem many times so GP got me an appointment at hospital and I was later admitted ( for the day I think) I had my bladder “stretched “ when consultant came round the ward after, he said you will never have the problem again, he was right! When he got to next bed he said to her, Hello again, hope this is the last time I see you. I said to her later so it doesn’t work then? She said, not in my line of business it doesn’t, the whole ward laughed…..Will never forget that….
Blimey - don't admit you for "stretches" here, not even sedation offered!! But for me it lasts about 10 years before it starts to build up again. Had one a couple of years ago - have to see if I need it at over 80!
I'm getting tests at the moment ( unfortunately still need to go for a dreaded cystoscopy to as my Consultant said " prove a negative"!!!! despite having a bladder and kidney scan).
The interesting thing he did say in my appointment last week was that if you have a UTI or Cystitis you can also get false negative results for bacterial infection.
The tests aren't high sensitivity so apparently a low, trace, or negligible bacterial concentration in the sample can cause a negative result for infection , although you can still have an infection and symptoms.
If you have recurring issues you can have worse symptoms at the start of an infection than general because your system is weaker and the brain and nerve messaging recognises infections quicker than in a system that has not been infected before. So you can find that you will get a negative test in week1 but a positive one if you weren't treated by the end of Week2 , then it can mean first line ABX wont work for some people which can maje some GPs assume it must not have been bacterial in the first place , and some bacterial infections are trace combinations which may require a more broad spectrum treatment, so my Consultant does not agree with GPs delaying antibiotics based on urine tests if symptoms are obvious.
He also pointed out that two of my UTis, and the kidney infections which came after, which triggered the cystitis were probably fungal and bacterial which is why I required antibiotics and antifungals to clear them.
That's right - and the dip tests are inaccurate for ladies of our age range!! But many GPs think they are gospel ...
For my 14 UTIs in 2023, I kept being told by the surgery "we don't dip test over 65s. We have to send the sample away and we will prescribe if it comes back positive. Have 3 days of antibiotics". Well, 3 days are useless and the results take a week to come back. I was put on a prophyllactic to be followed by a urine test. What did they do? A dip test only. 2 weeks later and another UTI followed by a 12 week prophyllactic.I had my "urgent" urogynaecology appointment last Monday. That was booked last July. Very thorough, but I have come to expect that from that particular hospital. I am now taking Hiprex. He booked me in for a cystoscopy in 8 weeks and for an MRI in 6 days. Yes, 6 days. I have just returned home from that. An MRI on a Sunday evening.
Do GCA treatments let UTIs in?
Immunosuppressants of any sort do make it more likely that you will develop infections and less likely that your immune system will fight them off successfully. We should be told to be scrupulous about hygiene "down there" because most UTIs in older ladies are due to bacteria transferring from the gut to the bladder. Once they are there, they are awful to get rid of.
The weekend and evening appointments are in an attempt to catch up on waiting lists.
thanks. Very interesting. I am currently in hospital for intravenous AB’s. I have had continuing UTI for 6 months and tried several different antibiotics. The urologist is now suggesting further investigation - at last! For the past 4 years I have had to self catheterise - bladder not functioning.
I had overactive and painful bladder problems for many years, was sometimes told it was UTIs even thogh bacterial tests always negative, other times unexplained. To cut a long story short a few years ago thanks to my research and persistence I got a dx of Painful bladder syndrome, also known as Interstitial Cystitis in the USA. The wonderful Uro-gynae consultant said its fairly common with 'myalgia' things like PMR And fibromyalgia and possibly autoimmune. Anyway, mine is now pretty much under control thanks to Cimetidine a histamine blocker and trying to keep to a low histamine diet, which sadly means there are many things I can't eat and drink even with the Cimetidine and the Pred supressing reactions.
Nice to hear an expert say it is common with myalgias - been saying it for years!!!
It does mention in the article that Painful Bladder Syndrome ought to be excluded when diagnosing UTIs and other bladder problems. But I was surprised when a friend of mine who has been a GP for over 30 years said she had never heard of it. Obviously none of the GPs I saw over the years had either.
It does sometimes make me wonder about some GPs fitness to practice!!! I watch a lot of GPs Behind Closed Doors and some of the series have teaching moments when a patient has something interesting, the thought process is explained. I sometimes wonder why, if they can do it and I have heard of the problem, other GPs look utterly clueless about the same diagnosis!
I think it's a problem of keeping up to date on developments on so many things, especially as things are evolving ever more quickly now with research adn technology innovations. They do CPD and read the Lancet, well the ones I know anyway, but their workloads really are horrendous too. I personally think AI will eventually help diagnoses, computer algorithms will know more than the average doctor and be able to put 2 and 2 together easier.
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