Recurrent UTIs- taking over my life

[hairycabbage]

Since late last year I've had at least one UTI per month, often clearing up for a day or two then coming back.
I've tried every piece of advice I've found:
Showering before and after sex (rarely now because I always get one afterwards anyway)
Taking D-mannose and cranberry tablets
Lots and lots of water
General diet improvements and exercise
Vitamins
Little to no alcohol
Wiping 'properly'

I've seen my GP several times, they've prescribed solifenacin in case it's an overactive bladder rather than infection but the last few times I've had samples tested and they always come back positive for infection. Blood tests are all normal. They don't have anything else to suggest. I'm currently on what is possibly my 8th course of antibiotics in six months 😢 I always try to flush it out before starting antibiotics but that rarely works.
I'm at the end of my tether, worried about going away anywhere in case I get one and can't get to GP for antibiotics, losing sleep because I'm regularly up and down to the loo all night and it's just taking over in so many ways.
If anyone can suggest anything I haven't tried I would really love to hear.

Hopeful bump 👍
On day two of another course and no progress yet so any 'out there' advice would be so much appreciated

D-Mannose worked for me.

Have you given up caffeine? No. 1 culprit in bladder clinic according to my doctor is the rise in daily coffee drinking. I gave up coffee and mine went away and stayed away.

Yes, I used to suffer thrush and UTIs. I did a 6 month course of fluoxetine for the thrush and gave up caffeine entirely. It worked.

Omg this is me aswel, Uti even gave me flase positive pregnancy test.... I definitely know there was no chance of me getting pregnant since I hadn't had intercourse for a long while

*false

How old are you? Any chance this is the start of peri? In which case vaginal oestrogen would be perfect.

How old are you? Could you be peri menopausal? A doctor once told me that menopausal vaginal dryness can contribute to UTIs and he prescribed Vagifem.

I also started using FreshX toilet paper spray after every bowel movement. Even though I thought I was wiping properly it’s made a big difference.

Your gp should be doing more. What bacteria are causing the infection, do they know? If not they need to do they can target the antibiotics.

Go back and ask for more to be done. Sounds awful, you poor bloody thing.

When you say the test for UTI is positive - do you mean the urine dipstick, or microbiology results? I used to have recurring problems, which were dipstick positive (indicates infection) and so treated with antibiotics. After a while they started sending for microbiology, and there were no bacteria present...so actually there was no infection, just inflammation of the urinary tract.

It's been a bit of a balancing act trying to work out how to prevent this, but here are a couple of suggestions you might want to try: changing sexual position (e.g. spooning rather than missionary); switching toilet roll, shampoos etc to avoid irritation of the vulva and urethra; avoiding certain foods/drinks (as others have said caffeine, alcohol but also orange juice, chilli, tomatoes etc); drinking lots of water; cranberry juice.

OP -I just to suffer dreadfully from UTI's. I had scans on my kidneys, dilation of the urethra, radioactive scans, still carried on.

I am not on a long term dose of antibiotics. I have to take one after sex, and touchwood they have worked for the last 7 years.

Are the GPs checking that you have been prescribed the right ABs for the infection - they should be sending samples to the lab to grow a culture to check.
Have you been sent for any scans etc to see if there is anything physically wrong?
Maybe ask for a long course of low dose ABs to really clear out any infection?
Some GPs will prescribe ABs to be taken immediately after sex on an on-going basis for a while.

If you are going on holiday, ask the GP for a prescription 'just in case'. Most will do that if you are known for frequent infections.

Uralix capsules have helped me,,,,

I would suggest trying hiprex it is a antiseptic rather than a antibiotic. I have been on it twice a day for a year and it has been a game changer.

Showering after sex won't really be doing a lot, if bacteria from sex is causing the UTIs then you need to be having a wee after sex. Almost straight away, every single time, it's what will flush the bacteria out. Ever since I started doing this, no UTIs.

However, I have recently been diagnosed with endometriosis and when I was reading about it, there can link between bladder and kidney infections and endo, so if you suffer with any other symptoms that could possibly be endo, it might be worth looking into?

Thank you all for your replies.
I'll try not to miss any responses!
I don't have any caffeine and very rarely any alcohol- I'm vegetarian and eat well.
My GP tested my blood and said I'm not peri menopause (early 40s) I did have endometriosis years ago but had surgery and it seems to all be ok- I don't have periods now after an ablation.
It almost always happens after sex but it happens regularly with no apparent trigger or lead up.
Samples are sent off to microbiology regularly and they just respond that I'm on the right antibiotic.
I don't have any signs of thrush (even after countless ABs!)
I am going to try and speak to my GP again but at the moment my surgery won't give any routine or telephone appointments at all (their words were the NHS is broken and there's nothing they can do). All I can do is an urgent on the day appointment and I don't think this would qualify.
Really appreciate the responses, off to look for the few that I didn't know of.

Ask your GP to refer you to a urologist. I saw one last year, as like you, I've been experiencing utis regularly with no obvious reason. It was helpful, my main takeaway was that some women are unfortunately prone to them, and advice was to not wait too long before emptying bladder and that probiotics may help.

I asked him about d-mannose which I was taking at the time, and his response was it can't hurt. I stopped taking them because they didn't seem to make any difference, same with cranberry extract. I occasionally get twinges (hard to describe but it usually means that a uti is about to occur) and so far, I've found that drinking lots of water has helped keep them at bay.

I do hope you can find a resolution, it is utterly miserable to be constantly having them :(

Vaginal oestrogen, you can now buy it over the counter from a pharmacy.
Blood tests aren’t accurate for hormones due to their fluctuating nature.

As per pp you need a urologist referral. My younger sister (20s) had this and is bow having regular outpatient treatment for it - it’s something to do with strengthening the bladder wall?

Dont be fobbed off, make sure you get a referral. You shouldn’t have to keep suffering

I’d suggest it’s peri, you are the right age for it starting.

Sadly I have a lot of experience of this. I used to be under Prof Malone-Lee for the same, before he sadly died and he was considered an expert. He too,d me I did not have recurrent UTIs, but I had a chronic uti which has never cleared (had it years).

before I saw Prof my gp had me on prophylactic low dose trimethoprim which kept symptoms at bay while I was taking it but if I ever stopped taking it the symptoms would come back.

Prof put me on higher dose cephalexin…..I know this has worked for a lot of people but sadly I’m not having much luck . However what has helped me is definitely vaginal oestrogen. I’d push for longer term antibiotics and a urologist referral, ideally the LUTS clinic in London.

I've had this since I was about 18 so 13 years now, it's miserable. Mine is always triggered by sex but like you said happens with apparantly no trigger too. Stress is a massive trigger for me. In the past I've had bladder distensions under general anaesthetic, bladder instillations, long term antibiotics, d manoose, everything.

It massively affects my life. I hugely sympathise op.

You need to be seen by a urologist now as nothing else is working.

What everyone else has said but I also wonder if you’re not fully resolving the original infection each time, even if you are on the correct antibiotics (possible peri aside).

I suspect something related to this This in my case and think seeing a urologist could be helpful.

Sympathy for you as it’s an awful quality of life impacting condition.

After suffering for 12 months ending in a kidney infection, I finally sorted it out. I went to an acupuncturist. My belief with these things is there is underlying chronic inflammation in the area. This destabilises the dynamic of biota leading to infections and flare ups. Other helpful things are a good daily probiotic and a real hard core attempt to remove all potential irritants from the diet for at least 3 months - no coffee, alcohol, reduced sugar and salt, UPFs. And a hydration regime that you measure to keep on track. 6 months ideally.