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

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?

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

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.

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.

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.

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.

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

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.

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

@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).

Sorry, forgot to add the link for the podcast:

podcasts.apple.com/gb/podcast/1-tests-misogyny-and-misconceptions/id1733889603?i=1000648438653

Hi Op,

Have a listen to this podcast, it will explain a lot about the mismanagement of uti currently and why your tests, both dipsticks and those sent away, can be misleading.

If they've only given you 3 days of tablets, you'd be better off with 7.

If you want a more advanced test, try Focus laboratories.

With this sort of pain it’s often a stab in the dark to find the right treatment, because the tests are unreliable.

The antibiotics won’t do you any harm if you don’t have a UTI, at least you’ll rule it out. If you do have a UTI then they’ll fix it.

Personally I tried thrush and BV treatment options first, then took antibiotics as a last resort. I still don’t know which one cured me! It’s up to you what order you want to try them in.

OP I don’t understand why you’ve been to the GP when the medication you need is available over the counter from the pharmacy? The three major causes of this sort of pain are UTI, thrush and BV, all of which can be treated with meds purchased from the pharmacy. If those options don’t work then you can talk to the GP.

If you can't afford a private GP, can you go to a walk in centre or similar to see someone else?
And if it's possible, could you take a family member/ friend with you to advocate if necessary?
Some doctors know about these problems with tests in my experience and will prescribe based on symptoms while others just dismiss you. Sadly you do sometimes have to be quite assertive.

Sounds like your trying really hard. Difficult to stick up for yourself when you’re in pain and want to feel better. I went back 3 times last time had a UTI! My tests came back similar to yours and once I got a 7 day course of nitrofuriton it went.

OP I've had similar symptoms the last few days. I can't be arsed with the palaver it tales to get a GPs appt so I just ordered nitrofurantoin from an online pharmacy, it's arrived within 24 hours and cost me 18 quid with delivery. If it doesn't help I'll go to the GP.

Got to be worth a try for you surely?

I really think GP care for this kind of problem is awful. Little knowledge and a system that’s trying hard to limit the use of antibiotics which are needed for this issue.