Chronic uti

[Babysleep1302]

Posting to see if anyone has similar. I have had chronic UTIs for years I’ve been for investigations at the hospital and had a cystocopy but this was about 8 years ago. Everything came back clear and consultant said to ask for antibiotics every time I got symptoms. Sometimes my UTI shows up in a dipstick test and sometimes It doesn’t. I’m so fed up as I’ve had three in the last month I haven’t had a test for these but I know I have one as it starts with frequent urination and my back and groin aching, sometimes it turns to burning when I wee but not always. I also feel ill in myself- weak aching and tired. Last week I had a a full course of nitrofurantoin and now my back is throbbing in pain and I feel ill again. I don’t know what to do as with COVID aswell the gp are rarely seeing anyone. I feel like I could have urinary retention by looking online as I really struggle to start a stream and hve to push to urinate and can’t fully empty my bladder. Has anyone got any advice of what I should do or what to ask the go to do? It’s so hard to look after my toddler when I feel this ill every couple of weeks.

I also have chronic cystitis though its been a matter of months not years. I'm also nitrofuratoin at the moment (7 day course) and it's not helped. Has it helped yours?

I spoke to my GP today and he has referred me to a recurrent UTI clinic but I don't know long that will take.

Prof Malone Lee's clinic in London has got very good reviews from women who suffered for years with this. He takes patients privately.

@MamaMary It does help but then a week later it comes back. That sounds hopeful for you. I’m going to ring my gp I guess they’ll just try more antibiotics I don’t feel like it’s getting to the underlying issue though.

I think you need to push to see a urologist.

I agree that multiple short courses of antibiotics won't solve this. I'm worried myself because nitrofuratoin is no longer working. I'm changing my diet to see if it helps.

My symptoms are a constant pain and a constant urge to pee, but I don't have trouble peeing like you do - that sounds very uncomfortable.

Have you had blood tests or been referred for an ultrasound?

@Babysleep1302 I've also suffered with chronic UTIs.

I've had blood tests, STI tests and an ultrasound of my kidneys.

My Dr kept helpfully kept telling me to pee before and after sex, use lube, etc. but it made no difference and I wasn't necessarily getting the infections when I had sex (one partner).

I thought maybe I was allergic to something, but no idea what.

I have switched to using baby shampoo/body wash and I hardly ever get UTIs anymore. I would seriously recommend trying it. I couldn't tell you why it works, but it has for me.

I have up with my Dr as I felt like she just kept fobbing me off. It was a different Dr who did all the tests.

I had this about 9 years ago. At least 10 UTIs in 6 months. My GP put me on 1 cefalexin every day as a prophylactic and I’ve maybe only had 1/2 since. I still take the cefalexin every day

I am hopeful because my doctor is sympathetic and has pushed things through quickly.

I'm getting my copper coil taken out in case it has helped cause this (it's been in for 7 plus years).

OP sounds like interstitial cystitis?

www.nhs.uk/conditions/interstitial-cystitis/

I'ld give 111 a call as it could have gone to a kidney infection, that's what I have at the moment and after 2 courses of 3 day antibiotics I'm on a 10 day one.

A couple of years ago I had 9 months of constant utis and really ill with them, half the time I'ld be given antibiotics, half just left getting more and more ill / delirious. Eventually went when I ended up in hospital and was given double antibiotics for 14 days. They should be sending it off to hospital for testing not just a dipstick test, that's how mine started and when I eventually went private in desperation it showed a rare uti on hospital tests and they gave me 14 days antibiotics then but said to take when got - that helped but think original one was embedded by then.

I know to people who kept getting utis and in both cases they managed to stop them recurring by taking cranberry supplements everyday.
Obviously this will not get rid of the current uti, but may help prevent subsequent ones. The name of the supplement is cistitus, but we're not in the UK, so not sure if that brand is available there.

*two, not 2.

🤦‍♀️ I made it worse...

Have you tried D Mannose? That helped me massively - I took two daily for a few months and now I hardly ever get them.

I had this a couple of years ago. Mayne slightly different to you as it always occured after sex. I had a cystoscopy and ultrasound and all NAD. Urinated before and after sex, was scrupulous with hygiene etc.
Nothing helped until I was prescribed one nitrofurantoin to be taken after sex. Haven't had a single uti since, touch wood.
I hope you can find some resolve OP, it really is a miserable situation. Can you pinpoint any triggers? Also has your urine been cultured? Some bacteria are resistant to the most commonly used antibiotics.

My Consultant thought there was maybe one uti that wasn't properly clearing and then rearing its head each time. He put me on a low dose antibiotic.. 1 a night for 6 months.
I also never get baths, don't wear things, always wipe with unscented baby wipes after bm (only use the baby wipe at the back).
This really sorted mine and I now take a supplement called d mannose 1 a night and a few more if I feel a twinge. Seems to ward it off. Good luck, it's the pits xx

I had this 4 years ago. Had scans, urologist but nothing was found. The uti went away after a 6 month course of antibiotics. Still urinated so much all this time and haven’t felt right. It’s recently started again and kicked off with a huge infection. I’m wondering if it’s low iron that causes it. Iv recently looked over all my blood tests and folate is so low no wonder if feel like crap.

How are you now @Babysleep1302?

Sorry to revive a zombie but I think it’s important as it destroys lives. I’ve been left to deal with it by the NHS and bought long term courses of antibiotics illegally, following the Dr Malone-Lee protocol. You can google him, he’s curing women of ‘incurable’ Interstitial Cystitis with long term antibiotics. There are a few others but not many.

Dipsticks have been known for decades to miss 50% of infections, same as cultures.

www.google.co.uk/amp/s/inews.co.uk/news/chronic-uti-crisis-treament-diagnosis-symptoms-failures-women-pain-years-1231089/amp

inews.co.uk/opinion/uti-common-condition-treatment-testing-inadequate-women-suffer-decades-1188843?ico=in-line_link&_gl=11epbjzf_ga*b1lIMlhiY29BOTBhR1Qxdmc4RXgtWGFfM0NPQ1B0RmtLd0pDdExhRWdGamRIQzBVbGVkRG1WdEFVbTl1Rk1sSQ..

www.google.co.uk/amp/s/amp.theguardian.com/society/2019/feb/20/in-pain-all-the-time-will-there-ever-be-relief-for-women-with-chronic-life-changing-utis

liveutifree.com/
This website has lots of resources about chronic embedded UTIs.

Oh and Professor Malone-Lee is on Twitter, I believe he’s retired but has trained a doctors with his methods, he just looks at a fresh urine sample under the microscope, nothing high tech.