I'm terrified of these urinary issues I'm having - what could this be?!

[lockost]

For nearly two weeks, I've had weird (what seemed like) UTI symptoms. I've never had a UTI before (early 20s).
This week these symptoms have gotten worse. UTI tests (all 3) have come back clear, 'just a few white blood cells, no infection'.

I feel like I need a wee 24/7. Pain in my abdomen. Pain in my back.
When I do go for a wee, it's usually a weak stream and not a lot.
I keep getting shooting pains in my urethra.
Feeling nauseous.
Feeling like I'm leaking urine when I'm walking.
(No pain when I'm actually weeing).

Getting the doctors to help with the 'all clear' tests is difficult. I've tried painkillers (don't make a difference), cystopurin, a thrush tablet (as advised by pharmacist).

I've got horrendous health anxiety so I've had panic attacks about this and that makes me worried that I could be psychologically making these symptoms worse by fixating on them.

Can anyone help if they have similar experience? I'm spending so much time crying because I just desperately want to feel normal again!

@lockost when my UTI came back negative x3 the GP still gave me AB in the end just in case (didn't solve anything as mine was pf issues)...but it didn't do me any harm (if that helpd ease your anxiety at all).

I’d go to the local walk in GUM clinic. They are truly the experts.

Also, the opinion of one GP doesn’t reflect the medical profession as a whole. There are other GPs who would happily prescribe antibiotics. I’ve often gotten a second or third opinion if I can’t get what I want from the first GP.

If you feel more confident trying other treatments then maybe do that first, and take the antibiotics as a last resort if the other stuff doesn’t work?

I think I'll just go for the antibiotics as I've already tried a thrush treatment (although I didn't have symptoms of thrush when I tried it and now I do 3 days later!!).

@TiberiusFlam do they also deal with urinary issues as well? I had no idea!

@TiberiusFlam now I'm looking at the actual name of the 'GUM' clinic and feeling stupid for asking.

I've also got myself into a frenzy that I've got ovarian cysts. Going down a spiral hole

If it helps I had a UTI which tested positive and so had 2 courses of antibiotics. Then a clear fortnight. Then the symptoms started again. The GP did a couple of tests which only showed raised protein. As a result I wad referred to the hospital under the 2WW for a bladder scan which showed nothing. Hospital asked for another sample and it was glaringly positive for a UTI. The urologist reassured me that UTIs don't always show up on the dipstick tests.

You could try a Urokey test from Regenerus labs. They test for about 50,000 different bacteria. The NHS tests are still the same ones that they used in the 1950s and don’t pick up all bacteria. The test is about £200. They send you the kit. You return your wee sample then they email you with the results and can refer you to their pharmacist who will ring you to discuss the findings and prescribe accordingly

I agree, Interstitial Cystitis definitely does exists. I was diagnosed via cystoscopy 10 years ago but mine came on 21 years ago after a very bad UTI. I’ve had numerous courses of antibiotics over the years, all possible types for a bladder infection plus very strong IV antibiotics for similar infections and I still have the symptoms. Symptoms which flare (or wane) with time of the month, pregnancy, breastfeeding and of course what I eat. An infection would not flare due to foods or hormones.

Op, chances are you have a UTI. Which antibiotics have you been prescribed? In my experience Trimethorprim is useless. Nitrofurantoin very good. If what you have does turn out to be Interstitial Cystitis (unlikely ) then please don’t stress about that possibility. It is usually very manageable with diet. You just have to find which foods are your triggers. There are just a few I avoid now and I have very manageable symptoms. Interestingly cranberry juice and tablets are often a flare food for IC sufferers although they soothe a bladder infection.

My IC is also better since pregnancy. I have just stopped breastfeeding my third and was expecting it to get worse again however so far I’m feeling the same.

Agree that this is almost certainly a UTI that is being missed. Interstitial cystitis usually has a trigger (eg a UTI!) so I wouldn't worry about that.

When they say that nothing grew in the lab, they don't mean that nothing grew as no-ones urine is sterile, what they mean is that it didn't grow a large enough colony of bacteria for them to consider it a UTI. (I believe NHS consider it a UTI then there is over 100,000/ml which doesn't help you if you only grew say 80,000/ml) Which in my opinion, is one of the reasons why so many women end up with chronic UTIs and/or an IC diagnosis. Even the NHS page on IC states that it can be a chronic UTI that has been missed by the usual tests.
Even worse is 'mixed growth' which is usually contamination, but they often tell you it means you don't have a UTI, which is beyond ridiculous.

If you've only been given a 3 day course from your pharmacy, consider getting another 3 days online (although don't tell them that your culture came back negative). 3 days of antibiotics has never got rid of a UTI for me. This is usually less than £20.

In future, when dropping a urine sample in, make sure it's your first pee of the day - super concentrated and has sat in your bladder for at least a few hours. You can buy sample pots from pharmacies or amazon.

I had a severe IC diagnosis for 10 years. Saw a private chronic uti specialist who picked up other bacteria and after a much longer, stronger course of antibiotics my symptoms have improved by 75%. I'm no longer taking opioids to manage my pain. IC isn't always a chronic UTI, but I strongly believe it plays a role in many cases.

Another one here to say that D Mannose changed my life with regard to urinary infections. doesn't matter what brand, it all works, but I just buy the pure powder on Amazon. Also a tip which my doctor friend said to always take the time to squeeze out the last drop of wee as there's often a tiny bit that sits around for ages, I know it sounds silly but I feel like it helps.

@Miiaaoow they actually gave me a sample pot. I may take my first wee of the day in tomorrow as it's starting to feel slightly burn-y now, and then take the antibiotics.

My ‘UTI that wasn’t a UTI’ turned out to pelvic floor hypertension - I had years of misdiagnosis and mistreatment until I found a private gynae specialising in pelvic pain. She referred me to a pelvic floor physio and as long as I keep up with my (very easy) exercises I’m fine 😊

constipation is another symptom too BTW

Go to a sexual health clinic and get tested for bv and thrush - if your GP won’t do it. At least you can rule them out. Chronic bladder issues can be caused by Ureaplasma/Mycoplasma infection which is not tested on NHS. Order an online STD test that includes these two.

Try antibiotics from the pharmacy. Nitrofurantion for UTI - worth a try. They are safe, and even prescribed during pregnancy.

D Mannose is recommended for BPS/IC. Also worth keeping a food diary to see if any link to certain foods - acidic in particular eg tomatoes can cause a flare up. You can then cut out any trigger foods but also have info you can give to a doctor towards a diagnosis.

After trying the above I’d go back to GP if symptoms persist and ask for a referral to urology.

Also worth trying a pelvic floor physio. Not sure how/if can access this on NHS?

I know you've had lots of good advice on here about plenty of things this could be but honestly I think it's not helping you as it's much, much more likely that you have a simple and treatable UTI than anything else. Your GP is useless unfortunately.

Either try another GP and just tell them that it burns when you wee and you want a full course or antibiotics, or take 2 of the 3 day courses from the pharmacy.

I have health anxiety and I really think that this thread is not helping you as while people are genuinely trying to help they are putting all sorts of ideas and worries into your head that you are panicking about and getting confused about. Your problem is not that there is anything serious wrong with you, the problem is that you have a UTI and the GP is going by outdated information and rules and not giving you proper treatment.

Just a FYI - once you start taking antibiotics your urine tests won’t be reliable. Some doctors are stupid enough to still test your urine after you’ve taken antibiotics, and if it tests negative they will say you don’t have an infection. In reality, even a single dose of antibiotics will skew the results and make you test clear even if you still have an infection.

Also a second FYI - I tested negative for thrush but my problem was later cured by thrush meds. Swab tests aren’t reliable either.

Likewise this changed my life. Turns out I have severe bladder irritation after years of UTIs as a kid / early 20s and I was taking antibiotics even when no infection. But last year dr recommended d-mannose and when I feel any pain coming on, I take it everyday for a week or so and it vanishes. It neutralises the urine so stops irritation. Highly recommend

How old are you? Is there a chance you could me menopausal? If there is, ask if there is a chance you could have vaginal atrophy, it can cause urinary symptoms, I use vagifem pessaries & take 1500mg of Dmannose every day, the pessaries get oestrogen where it is needed & help to protect everything down there from thinning & getting sore as well as helping reduce the chances of uti's & incontinence. I was having a uti every 6 weeks & was incontinent, wetting myself 6-8 times a day, after using vagifem for 3 months I'm nearly completely dry & can hold my urine, I'm no longer terrified of having a drink because I would wet myself.

Nitrofuarantin can cause neurological problems, I had repeated courses for chronic infection over the space of 9 months, I lost the feeling in my legs & feet, I'm now in a wheelchair. It causes neurotoxicity which damages peripheral nerves, mine is irreversible, my medical records now have do not prescribe Nitrofuarantin on them.

I'm the same as @Persianpuss.I've had many UTIs throughout my life and never had a temperature, not even as a child.

A fever with a UTI is rare. My best friend is diabetic so is prone to them, she only ever knows when her white blood cells are up.

You do know that the OP has health anxiety don't you? Honestly some of these responses are extremely unhelpful for the OP who is now getting confused and panicky.

I wish someone had told me about the risks of Nitrofuarantin, there are other antibiotics available, had I known, I would have asked to be prescribed something else. It's better to know & be able to question than to end up like me.

You are WRONG!!!!

The great work of one professor????

Like the professor who linked autism and the MMR

I have painful bladder syndrome

It is not a UTI

Bloods, scans, internal cameras catheters, and a painkiller inserted into the bladder 6 weekly tells me you are talking rubbish

I was you a long time ago. I saw a urologist who ruefully admitted they didn't know much about what caused because it didn't kill people. All my tests were clear and to make absolutely sure I had a bladder biopsy and I hadn't quite progressed to a interstitial cystitis. I found relief by following a very low acid diet -no coffee, no tea, no wine, no fruit juice and very limited fruit, no tomatoes etc and stopping the low dose antibiotics I had been taking for a long time for acne. (I took isotretinoin for the acne eventually.) It sounds very restrictive but it's easy to follow because if you break it you'll soon know.

Over time I was able to go back to a normal diet. I just have to be careful not to overdo the acid food and these days at the first sign of twinging I take antiacids - you could try ural sachets (which taste vile to me) or these days I pop a Prelief tablet which is specifically for interstitial cystitis and reduces acidity. I used to rush around to try to get things done before the attack really hit but now I know I should rest and let the antiacids work instead of dashing round. Plenty of bland fluids - think milk, or water or an Earl Grey teabag dunked once and plenty of milk. Nothing carbonated - I was felled by champagne in the early days and of all the wines this is the one that is most problematical for me.

I've had two children and I didn't have any problems during pregnancy - no wine and no coffee probably helped.

I recently consulted a urologist about something and he did say that most people in my situation make lifestyle changes to cope. This is the man who told me diet was totally irrelevant all those years but diet is nowadays recognised as being significant. I realise I will always have this weakness but 99.0% of the time I am absolutely fine. I hope this helps because I remember how desperate I felt all those years ago.

Oh, by the way I am sure I don't have an infection. If I did, I am sure it would have made its way to my kidneys by now and killed me since it started 30 something odd years ago. And the pain was very real. I have had orthopaedic surgery where they sawed by bones and rearranged and screwed them together with a metal screw and that was less painful than my uninfected bladder.