Help please... Uti that's not?!

[Glitterybelle]

I will try keep this brief but would like to hear if anyone has been through similar and can give me some positive stories pls.

At start of May I got typical uti symptoms (used to suffer lots with them). Dipstick clear but doc gave 3 days trimethoprim as dipstick used to be clear some of the times previously but antibiotics always worked.

This mainly worked but left with residual irritation in bladder and urethra. Thought this would settle but ramped up again 2 weeks later on hols. Given a sachet of monurol and this cleared it completely but only for a day.

Doc took bloods, sent culture and did swabs (swabs not back yet) but said could have thrush as discharge (sorry if tmi) so I took a thrush tablet.

Doc then said if symptoms still there likely infection as tests don't work all the time. Gave nitrofurantoin but 24 hrs into this Symptoms ramped up again with really awful urethral pain that I couldn't even sit still with, was just pacing the floors. Had a temperature and browny discharge. Rang OOO to get some proper pain relief and they said don't know why doc proscribed this antibiotic as not strong/only targeted one bacteria and gave me co amoxiclav instead and said to switch.

Trying to get a urogynecologist appointment, haven't much money but will pay if I have too but just feel so lost/confused as to what is wrong with me :(

I had a UTI that took months to clear up. Back and forth to doctors that wouldn't listen. Finally got 2 weeks worth of antibiotics and I bought more so 18days worth.
Cleared it up but was left with symptoms- no sign of infection. I think my bladder was badly scarred from how long the infection lasted. I took cystitis sachets to ease the symptoms. Avoided spicy food and citrus food. I had to go low alcohol and researched lots of other foods that aggravated the bladder. I drank lots of water. It took 6 months for my symptoms to ease. 3 years later and it hasn't returned.

@cherrybonbons thanks for replying. It's awful isn't it. How did you know the infection cleared if you still had symptoms, just since my tests are negative anyway?

Well when I gave my sample to the doctor after 3 years back and forth to doctors - it was the first time it came back with no infection in my wee.

If you google Intersistital cystitis - it is a thing. Mine did clear up. But it took a while and I had to manage it with sachets etc.
my bladder was damaged and needed time to heal

Ah OK thank you... It's just this urethra pain I'm left with, driving me absolutely nuts!!

Don't be fobbed off with a diagnosis of interstitial cystitis. If symptoms don't clear up consider contacting Prof Lee-Malones team at Harley Street. 3 day courses of antibiotics are causing an increase in the number of embedded uti's. The sooner you seek treatment the better.

Recommend the Facebook group called ‘BV/Yeast/UTI Support Group’, I’ve been battling trying to get a referral to a gyne specialist for an ongoing issue, and the advice on here has been really helpful to help me advocate for myself.

Hi - I really feel for you. I've been suffering with the most painful uti symptoms I've ever had since before Christmas. The GPs I've seen seem in disagreement over whether it's a uti or not - most say not because the urine tests keep coming back showing no infection. My symptoms have been painful frequent need to urinate, terrible urethral pain almost constantly (no painkillers seem to touch it), bloating etc. It's like a stabbing stinging pain. Often I feel like I need to urinate (painfully so) but just can't. I would say hundred percent continue to seek medical help obviously (I have no medical training whatsoever) and I'm also waiting to see urologist/gynaecologist and have had ultrasounds - they actually found a small polyp in my womb and one doc suggested this could be causing the pain, most disagreed. But the things that seem to be helping me so far are garlic and also probiotics specifically designed to reach your intimate areas. I have been crushing with the side of a knife (apparently leave for a minute of two to let the active ingredients develop?) and then chopping up 2-3 cloves of garlic per day into tablet sized pieces and swallowing them as I would tablets. I've also been taking vitamin c and cranberry supplements. Maybe it's just coincidence and it's clearing itself up but I've been having relief for the first time in months. Some amounts of garlic are too much (toxic?) apparently and can cause tummy troubles so please do your own research, ask your doc etc but might be worth looking into. Definitely worth pushing for more tests, consultation for your peace of mind too - just my account of what (hopefully) is helping me. Get well wishes!

@flowerexpress Ah thank you so much, its so nice to hear from someone who can relate (although so sorry you're going through it) . Did you get put on lots of antibiotics. I got an app with a urologist who said it could be residual infection though tests are negative. He has put me on 2 weeks of ciprofloxacin and then 6 months low dose antibiotic plus arranging for ultrasound and cystoscopy.

I'm on day 3 of antibiotics and they're not working so far.

@Firstsitdowntoday thanks I tend to agree and have looked into this. I know people seem to say IC... But I don't think that could be the case. At the end of the day I'd no bladder issues there and it just started with a normal uti so seems like that's what it is. Ugh it's really starting to have a big impact on my mental health. Thanks all for the advice xx

There is an embedded/chronic uti support group on Facebook which you could join. Loads of people in the same situation. It's really helped my mental health to have the support on there of people going through the same thing. It is also a hive of information.

Ah thank you @Firstsitdowntoday

I had a look but it seemed scary, noone seemed to be getting better despite years of antibiotics 😮

What age are you? I had this before starting HRT, but it’s much better now. The changes in your tissues down there when the oestrogen runs low can feel a lot like a uti.

No problem - thank you :) I've had mixed responses from GPs re. antibiotics - I don't know what's going on with my surgery but I speak to a different one each time and feel I've been fobbed off a lot to be honest. I was given a 3 day course and then a week's worth. I'm not sure if they made any difference (it's been going on a while now) but it certainly didn't solve the problem and the pain was still terrible. Some GPs thought that I could still have a Uti not picked up by the test (there are a few articles around on whether the standard testing in fact misses lots of utis) and others said categorically you cannot have a uti if the test is negative. Very difficult. I've been to a and e with the pain and all sorts and it was also really impacting my mental health because it was just so constant and no painkillers seemed to help.

This website might be useful - cutic.co.uk/

And here's a link to the article about garlic (there's a few around) www.sciencedaily.com/releases/2015/07/150710101332.htm

I've been throwing everything I can at it out of sheer desperation to be honest but I still want to follow through with the appts with gynae/urologist etc so I can be sure it's nothing else just in case as most docs do seem to be convinced it couldn't be a uti.

Still feeling much better after my attempts at self treatment with vitamin c, cranberry supplements, garlic cloves and probiotics but, like I say, best to get all avenues checked out obviously so you can be sure everything's OK and rule out/prevent any other possible issues. Just what seems to be helping me at the moment - I'll update on how it goes as the symptoms aren't fully gone yet but the relief of not feeling in pain all the time is amazing. It just wears you down so badly and makes it so hard to function.

Really sorry you're going through this too! Hope you get some relief and the doctors and quick and helpful x

These are the probiotics I've been taking alongside everything else - I guess unfortunately I won't know which thing helped etc because I started it all at once pretty much but frankly was desperate. They're also pretty pricey but, again, I was at the I'll try anything stage. Get well wishes!

www.optibacprobiotics.com/uk/product/probiotics-for-women?src=google&medium=paid&location=uk&campaign=generic&term=98141308530&content=bau&gclid=Cj0KCQjw-pCVBhCFARIsAGMxhAfavc0TW4fIGITEVa0dkBCbqSt8FNtJft0zVK--kiVkmFfFI9U8S7oaAiEEEALw_wcB&gclsrc=aw.ds

Ah thanks @RoyKentsChestHair I'm only 30 :( so I'm not sure if it could be that

Ohh thank you @flowerexpress funny I bought the optibac about 2 weeks ago but will add in the other things you said. Yes it does get you down doesn't it, so glad you're finding some form of relief though. Please do keep me updated.

I think you're wise to still follow through with appts too :)

I know it's hard when you get conflicting advice. It is 100% confirmed that NHS testing for this isn't accurate so I wouldn't listen to the gp that said that. There is a Dr who does a more advanced test (focus laborities) and I'm thinking of trying that. It's 75 pounds. They test in a different way and also say what any bugs they find are susceptible to. Might try that to rule a uti in or out.

My niece was told she had a uti and it was endometriosis

I had this for ages. It seems sorted now though, fingers crossed.
My doctor started off with vagifem pessaries to help relieve discomfort. Also really strong antibiotics followed by massive doses of anti thrush treatment (pessaries and cream). She sent me for an ultrasound to check bladder and kidney function. That's quicker where I live than waiting on urogynaecologist.
Also saw a woman's health physio who gave me exercises to relax an over active pelvic floor, which helped.
I also take a daily anti hisimine (loratidine based) because histimines can cause irritation. Also take marshmallow root and slippery elm supplements. I don't know what was the magic thing but I feel tons better now. It took ages though.

Hi op, I had recurrent UTI's since childhood.
At least 3 a year.
Finally at the age of 39 my new GP sent my urine off for culture and it came back as a not usual bacterial infection.

Because of my history he put me on a 2 week course of a strong antibiotic, then a 3 month course at a lower dose.
I've only had a few in the 11 years since, but instead of the 3day treatment I get 10 day anti and a urine culture .

How old are you op?
persistant UTI is a symptom of peri and menopause…GPs don’t take seriously in that context…even urologist piss about treating women properly ( pun intended)
if you are peri or menopausal look are interstitial cystitis…I have this. 2 years on very low dose antibiotics has eventually controlled it…nothing else worked despite 3 consultants and various invasive protocols ( instillation, distensions etc) god knows why the cheap antibiotic treatment still seems to be last port of call as the dinosaur urologist don’t know latest research on the condition 🤦‍♀️
Even the nhs helpsite talks about bladder removal surgery before it talks about long term very low dose antibiotic courses 😱

I have wrote this on another thread but I will pop it here as well.
I have had a terrible bladder since having my son 18 years ago. Got little to no help from the specialists etc.

same as u. UTI symptoms. Also had urgency and frequency. After years of testing I have helped myself.

one of the biggest things that has helped me with this is looking at my food and drink. I loved with cystitis symptoms for years till I realised it was food and drink making it feel like that. I now only drink water. As anything else makes it come back. Also look at ur food. Acidic food , certain ingredients in food , most fruit etc etc.

also. Be careful how many times u go to the loo. The bladder has the capability to learn. And unlearning constant weeing is very very hard.

I use something called Azo. Which I get from Amazon. When I have a flare up that helps work the symptoms. Feel free to pm me for any questions. I have been doing this for 18 years and have learnt alot.

All those wrong words!!! I’m sorry I didn’t pre check my post before posting. Basically lots of food and drinks containing stuff irritates ur bladder. One thing I used to do when it bad was to drink milk ( before I became dairy free ) that helped someone. But the good old water water flushing it out does it as well.

Thanks@clpsmum I did see people saying that could be the problem though I don't have any bad period pain etc.

@ImAvingOops thank you so much. I'm thinking of trying an antihistamine to see. Vagifem not sure if it'd help me because I'm 30? Yes I've noted down marshmallow root and slippery elm to get from Holland and Barrett. Glad you're feeling better 😊

@Pollydonia thats the course of action my urologist has taken, 2 weeks strong antibiotic then 3 months low dose. I'm 4 days into the antibiotics and don't feel it's working so not sure if it's too early to tell.

@EmilyBolton I'm 30 so too young for peri (I think?) but so glad low dose worked for you. That's what I'm trying. Seems crazy they wouldn't try that less invasive option first doesn't it.

@Paranoidandroidmarvin thank you I might pm you for info. Really hoping it's not that to be honest, have cut spicy and tomato based foods etc but I don't want to never have wine again, at 30 I feel far too young to sign myself up for a lifetime without any booze at all 😢

Look.into D Mannose OP. My mother ended up with liver damage from repeated antibiotics in particular Amoxycillin/Clavulanic Acid. She has been taking D mannose over a year now and no UTIs.

There's a great interstitial cystitis support group on fb, with loads of advice . There can be about 4 different types so worth a look

Got the results back from my urine sample with the urologist. Turns out I'd two bacteria (whilst Dr surgery test kept saying I'd no infection)
Took 2 weeks of the cipro antibiotics but tbh it's still here. Waiting to see what urologist says to do next, initially he'd said to go on low dose antibiotics for months once I'd finished this course but I'm not sure if I need to clear the infection first as not sure low dose will do that
Just updating for anyone who is interested. X