6 rounds of antibiotics and UTI symptoms not going away

[Hope24]

Hey all,

Could really use any advice please.

In January this year, I woke up one morning to really bad UTI symptoms. Sharp burning pain when peeing, urgency and pelvic pain and some blood in urine. I contacted GP, who prescribed 3 days of nitrofurantoin. This took the severe symptoms away, but some milder symptoms came back.

I was then prescribed 2 rounds of Cephalexin. This helped a lot, but again symptoms came back after a few days I finished the course.

I was then referred to urologist, who did an extension urine culture and ultrasound. Ultrasound was normal, but urine culture showed e coli and enterococcus bacteria. I was then put on 2 months of nitrofurantoin and hiprex. Hiprex made by symptoms a lot worse and around 2 weeks into nitrofurantoin, my symptoms had not eased at all. I was then switched to 7 days of ciprofloxacin. I had really bad side effects on this and again it didn't help with my symptoms.

I then went private to a urologist, who did another culture test and it showed no infection growth, but did show white blood cells.

He prescribed Co-amoxiclav for 7 days in case infection is still there. Ive just finished this course and again the symptoms are still there. The symptoms I have are burning during urination (but not as severe as January) and the burning continues for around an hour after, pain when bladder fills, urgency and pelvic pain.

I'm at a loss on what to do. Nothing seems to be working. Ive got a follow up appointment with the Urologist in a few days, and I don't know what else he could suggest.

Ive also tried D Mannose, and this has not really helped me.

Has anyone been through anything similar and managed to get rid of their symptoms?

It might be worth trying to find out what the cultures actually tested for and whether it was as extensive as the testing done by (for example) Digital Microbiology. And if not, and you can afford it, get DM or similar to test. I've used them and they were very quick and very helpful although nothing sinister showed up on mine.

It doesn't seem to make sense that, if the Cephalexin helped they didn't give a longer course but instead flung another different antibiotic at it.

Have they done a bladder ultrasound to check the bladder is emptying fully when you pee?

How old are you, could vaginal atrophy be a factor?

@faialthe culture test was quite extensive. It also tested for STIs (which was negative) and the bacteria that was found was tested for sensitivity against several antibiotics. It was sensitive to all the antibiotics that I have had, it just showed resistance to ampicillin. I don't think it was a digital microbome test however, ive not hear of this before. I'll have a look online to see what it covers.

@MayaLuiI'm 35, so not sure if that's too early for this?

Also, I have had an ultrasound which showed normal bladder emptying and no kidney stones seen in the scan.

I was wondering if ureaplasma could be a possibility. Or perhaps post uti bladder inflammation. Whatever it is, it just would be good to know as its really affecting me mentally.

Overactive bladder after loads of uti had years they perscribe toltate tartrate

The best treatment and tests a woman will get in my NHS area is, frankly, via the well-funded and expertly staffed GUM clinic service, so please consider making an appointment at yours.

Its details will be available online. Best of luck, it sounds awful for you

Before this instance did you have any other UTI's or has this been a one off? 35 is not too young to start getting menopausal symptoms such as a drying vagina which irritates the bladder so that even when infection is no longer present the symptoms remain, often for months. I used to have at least one UTI a year and the symptoms of several lasted up to six months after no infection was present. I had to do a load of things in combination to get rid of them. No alcohol, no fizzy drinks even sparkling water, no fruit juices except cranberry, no spicy foods, no citric or acidic fruit, no tomatoes or other acidic food. Vagifem used every other day (per Gynae advice). Not too much liquid as it just irritated the bladder to be emptying too often, occasional cysteme when it just got too much. I think when you have had a bad infection the bladder becomes so irritated and ultra sensitive that the slightest thing sets it off. I do feel for you. Maybe keep pursuing the testing to make sure but in the meantime start other measures to try and calm everything down. Don't expect quick results I'm afraid.

Edited to add absolutely no caffeine either. I now only drink decaf stuff.

Could be Interstitial Cystitis which is inflammation and irritation of the bladder wall without an infection present (I know you did have an infection to start with but the antibiotics may have cleared that up).

I think it is where the bladder lining is reduced and the urine causes the pain because the lining isn't working to protect the bladder wall.

Usually a cystoscopy is done so the docs can have a good look at your bladder.

I know someone who has this and had red, angry patches on the inside of the bladder and is now taking Amitriptyline for nerve pain and Mirabegron to relax the bladder. They help a lot with the pain and frequent urination.

Hope you find some answers and start to feel better.

I had this. Had every test. And they found nothing. Things that helped me over the last twenty years.

1. look at what ur drinking. I only drink water or sometimes milk which helps calms a flare. Ur bladder reacts to everything.
2. as the previous poster says. Look at the IC diet. Food massively affects the bladder. And I mean down ti certain herbs and additives and preservatives. Try eating really clean for a week and drink water for a week to see if it helps.
3. the bladder remembers things. So don’t go to often as that is a hard path to return from.

i have been in ur position. I have cried and swore and got so upset. I got no help and had to figure it all out on my own.

but the biggest things they helped me were the food and drink. I have been doing this for over 20 years. And only last week I figured out my bladder didn’t like corn starch.

edited to add. Ur bladder is in such a high state of reaction right now. It needs time to calm right down. So really think about the food. But be careful. For over 19 years I couldn’t even eat bananas or strawberries or grapes.

Firstly op how are you?
I just came
across this thread and needed to post
i would love some advice! i’m at my wits end!

UTI 15th may just bladder pain and no other symptoms i was given 3 days nitro
may 16th - period (normal)
cultures inbetween normal, mixed growth, red cells i think was 46uL
after the 3 days nitro i was given 7 days cefalexin
then i did an a&e visit, Blood test said high crp neutrophils was up slightly and white cells if i remember correctly. They said infection
7 days co-amoxiclav which i finished last wednesday!
by friday i had nitrites in my urine again.

the same Friday morning i started to bleed upon wiping firstly, then it got a little heavier, few clots in the toilet, little specs of clots on tissue with bright red blood this happened like this for around 48hrs which has now tapered down to just a bit upon wiping.
speculum in today said vaginal bleeding not coming from
urethra. Microscopy showed 19700 red blood cells and 125 white blood cells! Awaiting culture to come back but i’d love to hear any other experiences i have health anxiety and i am spiralling so badly x

My sister had years of this and oestrogen cream sorted it in the end. She was early 40s at the time. Probably less likely as you're a bit younger, but maybe something to consider/rule out.

I had something similar a number of years ago! I eneded up needing an operation to lengthen my urethra. I was also given a diagnosis of chronic cystitis and need medication to keep it at bay.
Before the diagnosis i was on multiple antibiotics for months. Really takes it toll on your body!

I use mine every day now following advice on MN - never had a UTI since. (I’m post hysterectomy.)