Any UTI experts?

[whatwouldyadoooo]

Every few months I get what presents as a UTI. Pressure, pain, burning wee, but randomly no urgency/frequency.
Most of the time it happens after stress.
Every single time I get my urine tested it comes back negative, but I'm in that much pain that they give me antibiotics which gets rid of the UTI symptoms.
I've tried not taking antibiotics for a week and it gets worse and worse and I end up in agony.
From the research I've done the dip tests we do are not particularly accurate.
I'm going insane as doctors keep telling me I don't have an infection, so I have to fight to get antibiotics each time which always cure the issue.
Any ideas?

I've even had to resort to using online pharmacies a couple of times to get some "just in case" antibiotics if the drs refuse to prescribe them.
It's so frustrating. I know my body and I know what a UTI feels like. And I know that antibiotics will cure it within 2 days.

How old are you?

There’s something called D-Mannose Waterfall which I’ve bought on Amazon. It cleared a long bout up for me last year

I've submitted urine samples which were pink from blood and still came back as no infection
Clearly there was
I wonder if we drink so much water when we've got them that this dilutes the sample too much
But I feel your pain

I was thinking it could be either vaginal atrophy which can present after the menopause or bacteria the NHS tests aren’t picking up. OP could try a Urokey test from a private lab. These tests are more sensitive. The NHS tests haven’t changed since the 1950s x

I suffered the same. Now I’m on long term trimethoprim. I take one tablet a night, this seems to have done the trick. Occasionally I get a breakthrough UTI but not very often.

Regenerus Labs do the Microgen tests x

Worth pointing out that the NICE guidelines have changed, you don't need a dip test in order to be diagnosed with UTI if you're female and under 65 if you have 2 key symptoms. Though helpfully the article doesn't mention what the key symptoms are, but I'd imagine burning, peeing frequently, cloudy urine and pain are probably among them.

https://www.nice.org.uk/news/article/new-nice-quality-standard-identifies-improvements-in-uti-diagnosis-for-women#:~:text=News-,New%20NICE%20quality%20standard%20identifies%20improvements%20in%20UTI%20diagnosis%20for,today%20(15%20February%202023).

Unfortunately D Mannose does nothing for me and I've been on topical oestrogen for about 18 months but I still get UTI like symptoms from time to time and have to get up some nights for a pee.

It really infuriates me that the dip tests aren't fit for purpose and haven't changed since the 1950s and the main treatment seems to be short term courses of antibiotics followed by long term antibiotics if the short course didn't work.

I've tried D Mannose and it didn't really do anything.
I'm also on Hiprex daily which has helped massively, but still get breakthrough UTI every few months.
I'm 40.

I'm wondering whether to stay on hiprex and take antibiotics every few months or to ask the doctor to go on long term antibiotics like PP above has.

It might be perimenopause or menopause related. I kept getting ITIs (and what felt like thrush) and the tests came back negative. Turns out it was menopause related (I was late 40s). Still got sporadic periods, my GP prescribed me cream and I've never had one since.

*UTI's not ITI's

Yep. Same x

OP dip tests are not very sensitive. I have ongoing UTI issues and mine only ever shows up when urine is sent away to grow cultures

Please do be careful with taking continuous antibiotics. I did this and my strain is now embedded in my bladder and resistant to several antibiotics (including amoxicillin)

My advice is get referred to urology and speak to your GP about some vaginal oestrogen cream. You are the same age as me and perimenopause was a factor

I would advise
-D mannose (don't stop taking and double your dose if no affect)
-cranberry capsules (juice does nothing)
-oestrogen cream
-drink lots and lots!
-Woman's probiotic capsules (the is 'good bacteria' that disappears with age which can help stop infections getting to the urinary tract)

Push your GP for a referral and perhaps ask for a cystoscopy. It's not painful and will often show what is going on (this helped with my diagnosis)

Good luck, it's horrible!!

Some good advice above. Just to add- I'm under investigations for recurrent UTIs and the consultant I saw advised not to take Hiprex and D-Mannose together (I think the D-Mannose reduces the efficacy of Hiprex- something to do with acidic urine from what I remember) and instead suggested taking the Hiprex with Vitamin C to help absorption.

Ask for a referral to a urologist. My issues were very quickly sorted out when I saw one.

Yes, i forgot to say my urologist said the same thing.

OP, ask for some vaginal oestrogen, you are in peri meno age group.

Ironically I've had dipsticks say I have an infection when I don't - this has happened 3 times! And then I've taken antibiotics unnecessarily. The sample eventually came back from the lab as no bacteria growth.

I have a chronic embedded urinary infection and I attend a specialist private clinic in Harley Street which has helped me greatly. (There is a NHS one at the Whittington (LUTS)). My understanding is that my condition has arisen through repeated short treatments with antibiotics in the past.
The reason the infection comes back is that a short course is not enough to clear the infection, so you feel better for a few days and then it comes back. Unfortunately, GPs mainly prescribe a 3-day course of antibiotics, whereas a 7 or 10 day course would be more effective and prevent these embedded infections taking hold.
My advice is to seek specialist help as few GPs and even urologists understand UTI as a chronic condition and may not believe you are infected unless the inadequate dip test says you are.

Thanks all. This has been going on for around 2 years now so not sure it's peri related as started when I was 38, but could be I guess.
I've asked for a referral to a urologist.

Mine has been nearly 2 years and I was 39 when it started

Peri might not be the cause of it but may be a contributing reason you cannot shake it off. Your usual defences for keeping it at bay (good bacteria growth, oestrogen levels etc) would usually stop it from returning m once the ABs have worked but as these defences reduce, the infection keeps coming back and becomes 'embedded' as PP said

I agree that short term bouts of antibiotics are what has now caused a chronic condition for me so be careful.

Do get a referral to a urologist if you can

Please please read this message OP.

I had the exact same issue in 2022, it ruled my life for months on end. I paid through the nose to visit a urogynacologist who couldn't help much but as my symptoms started over summer I also happened to take antihistamines which completely stopped my symptoms.

A visit back to the urogynacologist and he confirmed that it was likely a histamine response in the bladder from something I was allergic too that I was eating or encountering in the environment.

I took either Lortadine or Fexofenadine for months until I got pregnant and I'm now completely back to normal.

Lortadine can be bought in any Poundland in the UK. It shoud no you no harm as people take it every day for allergy relief. For the pound it takes to try it for a few weeks it's well worth giving a go. Ive shared this finding loads on Mumsnet and Reddit etc and its really helped others too.

Local oestrogen like vagifem, D Manose, 2grams 4x daily, 3 litres of warm water a day. Check you don't have thrush causing the burning and but Azo urinary pain relief tablets( available from amazon) and see if they help. Don't take antibiotics blindly as they are unlikely to help and may cause excess population of the bacteria present if you have one but knoweth out any good bacteria which are keeping them at bay. Get your doctor to send off a sample for testing regardless and ask them to do a vagunal swab. Hope it helps.

You might benefit from oestrogen pessaries.