Struggling with uti symptoms

[Peaches9125]

Hello, I was wondering if anyone could offer any advice? I started with a UTI 4 weeks ago today. Usual symptoms of burning, passing small amounts of urine and feeling generally rubbish. GP prescribed three days of nitro which did nothing apart from take away the stinging. I was still struggling with pain inside my vagina and feeling like I need to wee all the time so the Gp prescribed three days of trimethroprin (probably spelt wrong) this did nothing. I was in that much pain over Christmas I called 111 who did a prescription for pivmacillin, this did not help. After Christmas culture came back showing ecoli so the Gp prescribed 7 days of nitro and sent off another culture. After completing the course the discomfort inside my urethra and frequency was still there so I went back to the Gp. The latest culture was now showing enterococcus so I was then given 7 days of amoxicillin. Basically two out of the 5 antibiotics I have been given the bugs are resistant to however I am still symptomatic. It feels like a tightness and spasm inside constantly and like I need to wee all the time. I have paid privately for a scan of my bladder. Kidneys, ovaries and inside my pelvis. All clear apart from a small intramural fibroid. I am at a loss of what to do. This is really interfering with my life and to feel uncomfortable all the time is draining me. Any advice much appreciated!

I won’t be able to have that because I had my sex hormones tested and I’m not menopausal. I’m 34 and still have a regular cycle. I did think of this though which is why I requested the blood tests xxx

I had years of recurrent UTIs and treated it with antibiotics, usually successfully but it’s a thing that makes you feel horrendous.

However, I went on the ketogenic diet 7-8 years ago and an unexpected outcome was that I’ve never had them since. The ketogenic diet reduces inflammation in the whole body and I can only assume I had a certain level of inflammation in my bladder and it was making me susceptible to UTIs

I really recommend paying for the digital microbiology private urine culture and then taking the result to the GP. NHS testing is not very accurate and many women are being fobbed off with the diagnosis of IC when in fact they have an embedded chronic UTI and only long course, high strength antibiotics will cure it.

I would second this. I would also recommend scraping the money together for urine and vaginal testing. I think for years my problem has actually been my vagina giving me uti symptoms. The first thing you need to do is get proper testing.

Get your samples sent off to Digital Microbiology for urine and vagina. At least then you will have an idea what you're dealing with.

Would this show urethritis as well? Because that is the other thing that I’m thinking of

I’ve had recurrent UTIs which affect another disease I have so I asked my GP if I could try long term low dose antibiotics , I’ve had 6 months of trimethoprim and I’ve now swopped to low dose nitro for the next 6 months . I’ve had no symptoms now for 6 months ,even after sex which was a big trigger so it may be something people could try .

I used to suffer back to back UTIs. No idea what caused them but when I started taking probiotics for women regularly the frequency of my UTIs dropped significantly and now I very rarely get them.

There was a post on here the other day about probiotics for persistent UTIs. I've tried this too and it's worked wonders. I think mine was a constant low level of E. coli that tests weren't picking up and the probiotics have increased the good bacteria while fighting the bad bacteria. It's worth a shot. There's also d mannose and hiprex you can try (which is a bladder antiseptic)

I think so. Urethritis is just inflammation of the urethra without a known cause. It's usually bacteria. So any bacteria in the bladder / urethra would show in the test. Also, the same pathogenic bacteria in the vagina will make their way into the urethra and bladder. They are all so close together.

My advice would be to get properly tested first and take it from there. They are very good and give you treatment suggestions - or at least some hard evidence you can show your Dr.

There are lots of things to try once you know if it's your vagina or bladder or both. As PPs said: Hipprex, D mannose, probiotics...but the first step is testing.

Which probiotics do you use?

Free soul intimate flora... but I have used others which worked just as well.

Thank you so much. This is all really helpful x

I've suffered recurrent UTIs since I was 16. I've come to realise recently that I think the root of the problem is in my vagina and it's causing inflammation in my urethra and also stinging etc. This is why I'd highly recommend a vaginal swab in addition to bladder. My vaginal tests showed that I have zero Lactobacillus bacteria ( the good bacteria that helps prevent infection) and an overgrowth of pathogenic bacteria. So I'm now focusing on trying to address the imbalance in my vagina (with estrogen cream and probiotics) but I also bought some Fluomizin as I think my problem is actually AV (aerobic vaginitis).

I went through persistent UTIs during menopause which ended up with a referral to a consultant. They said they wouldn't do anything as I didn't get them frequently enough for treatment and that I should just accept it.

Eventually I had a long chat with a really helpful female GP who suggested that washing with shower gel removes the protective bacteria and that I should try only washing my vulva area with water. I tried it and it has worked.

This is what I have now done for the past 5 years or so and have not had a single UTI since. I also ensure DH washes before sex and we use a water based lubricant as well.

I had constant UTIs in my very early 30s (sex was the only trigger). I was prescribed some estrogen cream to use for a few weeks. I never had a uti again for 10 years - and there was a lot of baby making during that time! So it could be worth a try. I am now in my 40s and use it constantly as now peri and started having issues again (but not since restarting the cream)

Hi OP - I have struggled with similar since a nasty uti last year that didn't resolve. Thought I was going mad. Age 40 so possibly peri (estrogen cream hasn't helped much) but the main thing I urge you to try is a visit to a (good!) pelvic floor physio. She diagnosed me with a hypertonic pelvic floor (common after a nasty uti) that mimics uti symptoms. Stretches have really helped. I'm not totally symtpom free but much better than before.

OP even if tests show you are not in peri you can still have a hormonal imbalance which can cause vaginal soreness and in some cases atrophy. Do ask your GP for topical estrogen cream and see if that helps. It's totally safe and worth a try.

Thank you all so much for this advice. I will definitely look into the pelvic floor stretches and the cream xx

Hi, just an update. I had my urology appointment and I’m going to be having a cystoscopy, I’m terrified! One of the nurses suggested IC, I really hope it’s not that either as I’m aware there is no cure 😩 has anyone on here had a cystoscopy so I can maybe try and prepare myself.

Name changed but I've had a cystoscopy. It was honestly absolutely fine. I was so worried but barely felt it. It wasn't painful at all. I'd say very very slightly uncomfortable. A 2/10. Id rather have that again than a smear test!
My cystoscopy showed absolutely nothing of any interest. They were going to try bladder instillations until I started probiotics and all my symptoms suddenly stopped!

Ahh, that’s relieving to hear. Do they let you have gas and air in case it hurts? She also mentioned bladder instillations to me as well which also sound awful. I’ve been sent away with 14 days nitro ( even though my latest culture is negative yet I have symptoms) and hisprex. This is such a journey and it’s sending my anxiety through the roof! I’m glad things have cleared up for you, I bet you were over the moon! X

I was so so happy that the probiotics worked as I had literally tried everything. Even stupid things like using a new flannel each time in the shower and then drying my bits with a new single use flannel after my shower.
Hiprex worked for a while for me but not for long.
I tried ironing the gusset of my pants and washing my pants in a single load with no one else's washing. Plus d mannose and cranberry etc.
Have you tried probiotics yet?
No they didn't give me the option of gas and air and I'm an absolute wimp and can honestly say it didn't hurt. I think they put a bit of numbing jelly on beforehand?

Also tried cutting out caffeine, cutting out fizzy drinks, stopping gluten and dairy. Stopped eating Chinese food as I thought it may be MSG, and spicy food and blackcurrant as wasn't sure if it was the food colouring etc!
Sent myself down the biggest rabbit hole!

Oh and even impractical things like a full shower after every bowel movement. I sent myself potty!!!