UTI symptoms but no infection

[Lovemusic33]

Earlier in the week I suddenly had severe symptoms of a uti, I went to the gp and was given strong antibiotics and my sample sent off for testing, been taking antibiotics for 5 days and although symptoms are not as bad they have not cleared up completely, my test resaults have come back with no sign of infection. So it’s not a UTI?

When I google my symptoms (I know, I shouldn’t) my symptoms are similar to those of a comon STI.

Has anyone had what they thought was a UTI and turned out to be something else such as a STI? Is there anything else it could be?

[Tanfastic]

Yes me.

About 18 months ago I had a uTI for the best part of three months but nothing ever really showed up on a dipstick apart from microscopic blood. The cultures also didn't show much. I had several lots of antibiotics prescribed but although they worked, after a few days the symptoms came back.

I ended up getting referred to a urologist who booked me in for bladder and kidney scans and a cystoscopy. All these tests came back normal. In the end the "infection" just went on it's own.

However, I have for the last few days been having symptoms again 😩. I've been free of this for over a year so not sure why it's come back. I've ordered antibiotics over the internet to see if they help.

[Lovemusic33]

Thanks Tan that’s exactly what has been happening with me, I had all the same tests 2 years ago after bouts of UTI symptoms, everything came back clear, I apparently have something which means I have traces of blood in my weeall the time but no real cause was found.

This time it came on very suddenly and I was passing a lot of blood (maybe from straining), I’m coming to the end of my antibiotics and although the symptoms are a lot better they are still there.

I have ordered a home test kit for clhmidia (to rule it out) and will then go back to my gp if I’m no better.

Sorry you are going through this too x

[MujosMama]

This has been happening to me for years - 5-6 UTIs a year according to my symptoms but about 75% of the time nothing showed up on culture and only + blood and sometimes + leukocytes on dipstick

After a lot of back and forth I finally have a diagnosis of interstitial cystitis. I have an oversensitive bladder lining that flares up and irritates even in the absence of any infection.

The diagnosis was pretty unpleasant and I eventually had to go private and get a diagnostic cystoscopy for a definitive answer but the treatment has been awesome, a tablet called solifenacin which controlled my symptoms brilliantly for about 4 years. I was just starting to get flare ups again and was on the waiting list for hyaluronic flushing when I found out I was pregnant and had to stop all treatment. However, I have weirdly not had any bladder problems at all pretty much since I gave birth 8 months ago.

Please don't order antibiotics off the Internet, it's dangerous for you (you have no idea what you are buying) and dangerous for the population as it's increasing antibiotic resistance. Push for a referral to a urologist or ask about IC!

[Tanfastic]

We sound very similar - I’m the same with the microscopic blood in my wee. It’s always there and just one of those things according to the urologist.

I also had sti tests and a pelvic exam but all was clear.

I’m putting mine down to perimenopause and a slight bladder prolapse. I really don’t see any point in going back to the go. I’m just praying these antibiotics work. I’ve no pain when I’ wee g though just a heavy feeling down below and a constant need to wee but then only a dribble 🙈.

Fun eh?!

[Mycarsmellsoflavender]

I had something similar last week. Kept needing to wee all the time and then when I went it was hard to go. Next day, I developed a fever (possibly unrelated) but I went to the doctor with a urine sample which turned out to be clear. Was given some antibiotics (trimethoprim) anyway but it didn't clear up so went back to doctor. Second doctor thought it was a prolapsed uterus pressing on my bladder. I'm now waiting for an ultrasound scan to see what's going on.

[Tanfastic]

I’ve ordered antibiotics through Lloyd’s pharmacy. Not dangerous at all. I know my symptoms and I know what I’ve taken before. I’ve seen a urologist thank you.

[MujosMama]

Sorry @Tanfastic i though this was about sharing our experiences and helping the OP. You said you'd bought antibiotics online not that you'd been prescribed them by an online clinic such as Lloyd's run. Very different. Your comment might be misconstrued. You said you'd seen a urologist, the OP didn't. My advice to her was to get a referral

[Tanfastic]

No worries. I just wrongly assumed by me saying I’d ordered them online people would realise it wasn’t off a dodgy website!

I agree a possibility for the op is that it’s IC and only a cystoscopy will rule that out.

How old are you op?

[Lovemusic33]

I had a cystoscopy 2 years ag when I had similar symptoms (UTI symptoms and blood traces in my wee) all came back clear as did scans on my kidneys and urinary tract.

At the moment I feel tired all the time, not sure if that’s just the antibiotics? I’m not in pain when I pee but I am still going a lot and when I need to go I need to go pretty quickly. I will see how I am Monday and decide if I need to go back to gp.

[Iceskatingsnake]

This (and some of the other posts) sounds very familiar to me. Infection symptoms every few weeks, dipstick at surgery positive for blood, leukocytes and occasionally nitrates. Antibiotics given, sample sent to lab which comes back clear every time. But antibiotics do clear up the symptoms for a bit in my case. I’ve had ultrasounds, 2 flexible cystoscopies, a nuclear medicine X-ray of bladder and kidney. Nothing explained what was going on and after over 2 years of this I was starting to feel I was going crazy and imagining it all.

The consultant then said they’d do a rigid cystoscopy under GA to rule out interstitial cystitis (that’s what he thought it was). This showed up a condition called cystitis cystica which is usually caused by untreated or undertreated uti. After years of prophylactic antibiotics, tablets to calm the bladder (none of which worked), I’ve just started a course of bladder installations to try repel bacteria and heal the damage to the bladder wall. The surgeon said cysts are covering virtually the entire bladder wall and bladder neck and this is an ideal environment for infection to stick to. So the urine samples come back clear because the infection is in the bladder lining and only rarely shows up in the urine he said.

The rigid cystoscopy was the game changer in terms of getting a definite diagnosis and if anyone suggests a flexible cystoscopy to see inside your bladder I’d ask if they can do the rigid one that would show up inflammation, cell structure changes. I wish someone had thought to do this years ago as it might have saved years of misery.

My advice is to not get fobbed off with ‘you don’t have an infection’. I’m a good case of absolutely having infections despite lab results. I’ve lost count of the times I’ve been told I don’t have one though and I was feeling like a total fraud. Interstitial cystitis causes similar symptoms to uti and these bladder installations are offered for this too. The ones I’ve just started are called Cystistsat but the nurse said there are 3 alternative drugs and that it can be trial and error till you find one that helps. I don’t want anyone else to go through what I’ve been through so please don’t let GPs or consultants fob you off. If you feel something isn’t right and that you do have uti symptoms regardless of lab findings, ask for a referral and be as assertive as you can with them. Women of peri and menopausal age often get dismissed when it comes to bladder problems. It’s either our hormones (which can make things worse for sure) or the consequence of childbirth or other reasons that may just be a red herring and nothing to do with the actual problem.

[Tanfastic]

What's the difference between a rigid cystoscopy and a flexible cystoscopy then? I assumed it was just the instrument they used, the flexible ones being the more modern approach. I thought that both were just a way to see inside your bladder, but using a different type of instrument if that makes sense. I didn't think they offered rigid cystoscopies any longer.

Op, it sounds like you are one of the small percentage of people like myself that just naturally carries a minuscule amount of blood in your urine. My consultant told me that some people just do and there was not always a sinister reason for it. The gold standard tests we have both had so it's difficult to know where to turn next. I've also been fine for just over a year, not a sniff of a problem until now.

I'm suffering today, I feel very uncomfortable down below and feeling the need to pee a lot more than normal. I've started on Nitrofurantoin today so hoping that sorts it out. I've also got a raging sore throat, chills and aches and a sore ear so I'm wondering if it's all connected and some kind of hideous virus 😩

[Iceskatingsnake]

Tanfastic I haven’t really got an idea what the difference is between a flexible and a rigid cystoscopy is. It’s sometning I’m going to ask next time I go for a treatment. The flexible ones were done with a bit of local anaesthetic but the rigid one was done under GA. they fill the bladder to capacity with water so it’s blown up like a water balloon. I think that would be too painful to do without being asleep. But I can’t understand why the rigid one was able to show what 2 flexible ones didn’t show? My friend (who goes to the same hospital) had her IC diagnosed by a rigid cystoscopy too. She was told the flexible ones don’t pick up inflammation. Whether that’s the case or not I don’t know.

[Cookie4u]

Hi , I'm going through the same sort of thing , sudden UTI ,
That's comes and goes I had antibiotics last September and it helped but then returned .

My go said to me the other day that Blood and urine don't always show .

Look up interstitial cystitis .

I had a blood test and sent off more urine and I'm having an ultrasound on my bladder .

[Chrisinthemorning]

Looking for some advice. I had a health check at my GP recently and I have had 2 urine tests come back with microscopic blood and they said it did grow mixed bacteria. I must have a UTI but have been symptom free. I have been prescribed nitrofuratonin for a week, then I have to wait a week then re test. Should I be concerned?
I do have a history of recurrent UTIs and had 6 months of antibiotics when I was younger.

[Tanfastic]

Chrisinthemorning I wouldn't worry too much and do not Google! It might be that you've got a mild infection but no symptoms. The Nitrofurantoin should sort it out. If you have blood in your wee next time they may want to run a few further tests just to rule out a few other things but the chances are you are just one of those people (like me) that always seems to have microscopic blood in their urine for no reason.

[Chrisinthemorning]

Thank you I haven’t googled but I am a worrier so am trying to convince myself I don’t have anything scary. I need to remember common things occur commonly and for a non smoking 40 year old woman a UTI is by far the most common reason for microscopic haematuria.
I am a dentist so have just enough medical knowledge to havehealth anxiety without actually knowing anything about bladders!

[Tanfastic]

Well I've been where you are a year ago, saw a urologist privately and had a battery of tests which showed nothing. The urologist told me it's just one of those things with me. I'm a similar age to you, mom smoker etc. All will be fine

[alfielove1]

Hello, I know you wrote this a couple of years ago but this is really interesting to me as i’ve struggled with the same thing the past two years and i’m only 19 :( . Months and months of going to my go with uti pain but countless negative results back off those stupid dip tests and lab tests which show nothing. i’ve been referred to a urologist and had a ridged cystoscopy under GA in March and a biopsy was taken but due to coronavirus nobody has talked about the results of it with me. I have this deep feeling it’s not interstitial cystitis but an untreated or under treated uti like your own as this all started after a recurrent uti.

[alfielove1]

@Iceskatingsnake

This (and some of the other posts) sounds very familiar to me. Infection symptoms every few weeks, dipstick at surgery positive for blood, leukocytes and occasionally nitrates. Antibiotics given, sample sent to lab which comes back clear every time. But antibiotics do clear up the symptoms for a bit in my case. I’ve had ultrasounds, 2 flexible cystoscopies, a nuclear medicine X-ray of bladder and kidney. Nothing explained what was going on and after over 2 years of this I was starting to feel I was going crazy and imagining it all.

The consultant then said they’d do a rigid cystoscopy under GA to rule out interstitial cystitis (that’s what he thought it was). This showed up a condition called cystitis cystica which is usually caused by untreated or undertreated uti. After years of prophylactic antibiotics, tablets to calm the bladder (none of which worked), I’ve just started a course of bladder installations to try repel bacteria and heal the damage to the bladder wall. The surgeon said cysts are covering virtually the entire bladder wall and bladder neck and this is an ideal environment for infection to stick to. So the urine samples come back clear because the infection is in the bladder lining and only rarely shows up in the urine he said.

The rigid cystoscopy was the game changer in terms of getting a definite diagnosis and if anyone suggests a flexible cystoscopy to see inside your bladder I’d ask if they can do the rigid one that would show up inflammation, cell structure changes. I wish someone had thought to do this years ago as it might have saved years of misery.

My advice is to not get fobbed off with ‘you don’t have an infection’. I’m a good case of absolutely having infections despite lab results. I’ve lost count of the times I’ve been told I don’t have one though and I was feeling like a total fraud. Interstitial cystitis causes similar symptoms to uti and these bladder installations are offered for this too. The ones I’ve just started are called Cystistsat but the nurse said there are 3 alternative drugs and that it can be trial and error till you find one that helps. I don’t want anyone else to go through what I’ve been through so please don’t let GPs or consultants fob you off. If you feel something isn’t right and that you do have uti symptoms regardless of lab findings, ask for a referral and be as assertive as you can with them. Women of peri and menopausal age often get dismissed when it comes to bladder problems. It’s either our hormones (which can make things worse for sure) or the consequence of childbirth or other reasons that may just be a red herring and nothing to do with the actual problem.

Hello, I know you wrote this a couple of years ago but this is really interesting to me as i’ve struggled with the same thing the past two years and i’m only 19 sad . Months and months of going to my go with uti pain but countless negative results back off those stupid dip tests and lab tests which show nothing. i’ve been referred to a urologist and had a ridged cystoscopy under GA in March and a biopsy was taken but due to coronavirus nobody has talked about the results of it with me. I have this deep feeling it’s not interstitial cystitis but an untreated or under treated uti like your own as this all started after a recurrent uti.

[m0ntybojangley]

@alfielove1

hello! i know you wrote this a couple of months ago but I am also young and going through the same thing. Had a really bad UTI, and then another, antibiotics never really cleared up the burning feeling (i had 4 courses over two months) and then tests started coming back negative yet the burning feeling was so persistent. I have finally managed to speak to a consultant who sent my urine off to test for fastidious bacteria (as she thinks it could be bacteria that doesn’t show up on normal GP tests) and also i am having a rigid cystoscopy in a few days but I am going out of my mind with worry and anxiety that this may never be discovered and fixed.

What ended up happening with you? Did you ever find out what it was?

[Wireless77]

Please look up Professor James Lee Malone, and also www.cutic.co.uk/. You may find it helpful.