Reoccurring utis/kidney infection

[mothermirabelle]

Hello all
Looking for advice on utis/kidney infections. Sorry it’s a bit of a long post but I wanted to give you some background.
I started with a uti at Xmas. It came completely out of the blue, during my period. I’ve never had one before. Was prescribed 7 days of macrobid and it seemed to go. Fast forward to mid- Feb and I travelled to the US on a business trip. I was on my period and started again with a uti. A visit to a local urgent care showed there was infection and I was given a 7 day course of antibiotics whilst I was out there (Ciprofloxacin). After the 7 days (by which time I was back in the U.K.) I still didn’t feel the infection had cleared - I felt as though I had urinary retention issues, pressure in my tummy and tender kidneys.
I saw my GP in the U.K. and they asked for another urine sample. A day after this visit I ended up with a really nasty kidney infection - gosh what a horrible thing. Never experienced anything so unpleasant and painful. I was given another 7 day course of antibiotics (cefalexin) and my GP has now booked me blood tests and an ultrasound on my kidneys (appointments are next week).
Throughout all of this I’ve been giving urine samples which have either been lost or they’ve been unable to determine the type of bacteria. I finished the cefalexin just over a week ago now. Still have symptoms and GP has confirmed that the last urine sample I gave - just after I’d finished the cefalexin - is still showing bacteria growth (so there is infection still there) and this time they’ve been able to identify what it is. On Friday they prescribed me a single dose of fosfomycin which I took Friday evening. Unfortunately the symptoms still seem to be there. I don’t have the urgency, burning when I wee or feeling of urine retention anymore but the kidney pain itself is returning.
I’m going to call my GP in the morning as I don’t want to just leave it and have it develop into a full blown kidney infection again but I just wondered if anyone else has experienced this - antiobiotics not working etc - and what you eventually did or were prescribed to get over it?
I’ve never had anything like this before so I’m so worried about what it is and why it won’t go away.
I’m 49 years old, probably peri-menopausal although I’ve not had lots of unpleasant symptoms up to this point, so not sure if that’s got something to do with it.
Any advice gratefully received!

Hi @mothermirabelle I've had this issue since last summer! I've lost count of the number of antibiotics I've taken. Initially, my samples kept coming back as mixed growth, but eventually one did show a strain of E. coli which was resistant to a lot of antibiotics. I was put on ciprofloxacin for this (which I found awful. Felt so poorly on it). Anyway, that work, but it came back. Went to see a urologist (NHS, so there was a bit of a wait, but not as long as I thought) and got put on a low dose course of antibiotics for 4 weeks. Have just had a cystoscopy which showed no inflammation, but debris in my bladder which he said was left over from infection. He said this needed to clear in order for me to be fully rid of infections, so just about to start cefalexin for a few weeks. I'm praying it works! Have been taking D Mannose too, as have heard good things about it. Definitely ask for referral to a urologist if you haven't already seen one.

I used to get these a lot. Luckily just the once the antibiotics didn't work and I got the full blown kidney infection but I've never felt so poorly. I got to the point where I had 3 infections within 2 months and my GP suggested a longer course of antibiotics to give me a break. They had been suggesting it for a while but I was quite resistant at first. Wish I'd done it sooner though because it really did the trick. I had 6 weeks at first then extended to 6 months. Worth asking for a referral as PP said but I got mine through the GP. Some are better than others though so maybe try a few different doctors in your practice?

Thanks so much both for your responses. I’m sorry to hear you’ve also been going through this. It’s not fun!
I’ve been referred to urology by my GP but it’s likely to be a good few months before I get an appt. In the mean time, I’ve got blood tests and an ultrasound booked for next week.
I’ve read quite a bit about D Mannose so might also give that a go. I’m taking a cranberry supplement but I’ve read that whilst it may be a good preventative it’s not helpful once you actually have a uti.

@Covidwoes do you mind me asking how the cystoscopy procedure is? I’ve got a feeling that if I’m referred to urology they might recommend I have one. Was it really unpleasant?
Interesting to see you’ve also been put on extended courses of antibiotics.

Sorry the antibiotics aren’t working. Urine infections are such a horrible pain. For a few years in my 20s I had them all the time. I must have had one every 4 months or so and I had many threatened utis where I’d feel the familiar burning start but managing to drown myself in enough water to flush it out before it got right in. I was on the pill through all of them and always wondered if that contributed to them as I’d seen people’s accounts saying they did. The worst one came when we went on holiday with friends. I had been drinking so much water the whole holiday as I knew there was a risk of it happening. I think being in the sun all day had obviously cancelled that out though and I ended up with one of the worst ones I’d ever had. The worst of it was, when I have one I just want to sit in a bath and drink litres of water until I feel like it’s improving at all or wait for the antibiotics or those awful sachets to kick in. I spent two full nights just standing in the shower in the shared bathroom of the apartment running water over myself to try to help the pain. I couldn’t go out for dinner and couldn’t even sit in the sun as I just felt so uncomfortable, it really is the worst type of pain! I had to go to the doctors and eventually managed to get antibiotics. I attempted going out for dinner with everyone and was sitting at the table after ordering in so much discomfort. I went to the toilet twice then had to say I was going to have to give dinner a miss as I was in so much pain 🤦🏼‍♀️ I just desperately wanted to go home!

Sending so much sympathy that you’re dealing with this. Weirdly since having a baby I haven’t had any but I really don’t know why they have suddenly vanished. I’m so glad they have though. Really hope yours clears up. Lesley garret (I think her name is?) gets them really badly and drinks 4L per day to avoid them. I remember discovering that in my pit of loneliness deep in the internet on that holiday 🙈

@mothermirabelle the cystoscopy did hurt, but only for a tiny bit, and it was over so quickly! I'm so glad I had it done, as until
I had it the reason behind the repeated infections (and frequent mixed growth findings!) was a mystery. I'd definitely request one if you can.

Have you had IV antibiotics yet?

Friend had UTI for 6 weeks and none of the tablets worked; however she had high dose IV antibiotics over 3 days (30 mins per day) and it cleared it

At your age my UTIs stopped when I started topical oestrogen - i had vaginal atrophy (ah the glamour). Even if you dont want full on HRT local oestrogen is a miniscule dose that makes a massive difference. Worth considering/asking about in tandem with your antibiotics.

@jackstini I think this is what I may need, but nobody will do it. I was sent to hospital by my GP for this once, but the hospital refused to do 3 days worth, as I'm otherwise healthy. They did one dose and that was it. Here I am, 6 months later, still getting UTIs. Infuriating.

Oh that is a pain @Covidwoes - it's a real lottery

I have one at the moment - got an appointment at 3pm today (ended up going in to GP after 63 phone calls!)

@LadyGardenersQuestionTime - that's interesting - I also picked up my first dose of oestrogen gel today!

Thanks all.
@jackstini Not had IV antibiotics suggested to me. Even when I had the kidney infection - which really was awful - I went to the hospital and they encouraged me to keep going with the oral antibiotics. It took 4 days for the pain to subside. I’ve had less painful labours!
I’m now on a 10 day course of trimethoprim (this must be the 5th antibiotic now) but at the moment I’m still not convinced it will go, probably because nothing so far has completely worked.
They’ve identified the bacteria which is Citrobacter. Weirdly it’s most commonly found in hospitalised ICU patients, which isn’t me.
@Covidwoes Sorry to hear you’re no further forward. You’ve been suffering longer than I have so that worries me. Feel that I may go down the same route!
@LadyGardenersQuestionTime Thanks for the info on the oestrogen. The GP I spoke to yesterday said it could be linked to my hormones/peri menopause but he didn’t offer up any solution. We have a specific female GP who deals with all things meno so I’m going to try and contact her and ask for advice based on what you’ve said.

You definitely need an ultrasound to get more clarity on the issue. I had a PUJ obstruction which caused recurring kidney infections. It was a long-standing thing that was OK until it wasn't, I was diagnosed at 34 and had almost constant antibiotics until I had it operated on a few months later. Didn't have a clue until I ended up in A&E with the worst kidney infection never felt so ill in my life! Your GP doing all the right things though referring you for bloods and ultrasound, hopefully you will have clarity soon - wishing you better xx

It may not be relevant to you, but all my long-term repeated UTI and kidney problems disappeared once the chronic constipation (due to a prolapsed bowel / rectum) was sorted out. If I still get the occasional UTI or kidney twinge I quickly sort out any slow bowel motility issues and the bladder symptoms soon go.

At 49 I'd get myself some topical oestrogen, either from my GP or just buying it from a chemist.

Even if you don't go for full HRT, definitely the vaginal oestrogen will be worth it.

@Lolacat1234 yes bloods and scan next week.
@balconylife that sounds like it was tough for you but glad it seems to be resolving. I don’t have any bowel issues. Never had any uti issues though up until this point. It was one of those things I read about women having but had never experienced myself.
@AnnaMagnani thank, yes I’m going to enquire about this.

Sorry to resurrect old thread but wondering if it resolved op?

Thanks for checking. Yes it has! Kidney scan was clear. Had 6 rounds of antibiotics in the end - the last 2 lots were of trimethoprim which specifically targeted the bacteria they found (something called Citrobacter apparently which is an uncommon one hence most of the other antibiotics not working). I was booked in for a cystoscope, which I really didn’t want after reading up on it. I spoke to the consultant at the hospital beforehand and they said to not have it for now as my issue was better (and the procedure does run the risk of causing more Utis) and see how I go. He suggested I take D mannose for 3 months which I bought but have yet to take (mainly because I’ve heard there can be side effects - upset stomachs etc - and after not feeling great for a while I didn’t want to risk anything). I probably should give it a go though.
I am still getting resistance from my doctor about taking any form of HRT, mainly because I have an elevated breast cancer risk (due to family history) and my peri symptoms are minor.
I am hoping the cause of the uti was just a stubborn and slightly difficult to treat bacteria (in the end the right antibiotics did clear it) and that I don’t have a reoccurrence.

Pleased your results came back clear.

I really suffer with UTI, d-mannose has worked brilliantly for me, never had any side effects from taking it, it’s a fruit sugar basically.

The other thing I do that really, really helps calm my bladder when I can feel a UTI brewing is drinking Robinsons Lemon Barley Water (has to be this specific one, not fruit & barley type) it calms and soothes the urinary track down, works wonders for me. Not always easy to buy, only big supermarkets seem to stock it now. If you Google lemon barley water, you will see they are lots of other benefits to drinking it. DO NOT a drink cranberry juice, everyone seems to think this helps UTI, it’s probably the worse thing you can do. As it makes the urine more acidic, the lemon barley will make it alkaline.

i was on antibiotics all the time before, trimethoprim was the only one that seemed to work for me. I haven’t had a UTI for about 3 years, so this regime is working for me. I did have cystoscopy in December last year, as blood was being found in by urine, all was ok. Cystoscopy was ok at the time, but I did feel pain for three days or so afterwards.

I hope you feel better soon OP, UTI is really miserable.