Son UTI for over a year -help

[cosietea]

I do have another thread in chat which tells the whole saga but I'm really after some quick advice from anyone medical please

Son 16 years old
Ecoli infection in urine since August 2023 ( yes over a year!)
8 course of antibiotics ( all sensitive to the infection)
Still infected
One ultrasound 10 months ago which showed debris in bladder but nothing concerning with bladder or kidneys

What would be causing this persistent or reoccurring infection please? Already had a referral to paediatric but they sent him home with more antibiotics back in September and we are back to square one

Help please! Anyone have experience, knowledge of what would cause this and how to resolve? Not getting much help from NHS

Male UTIs can be a lot more complex than females due to a longer urinary tract. Definitely needs referral to Urology, and not necessarily peads. Is he sexually active? When I was initially reading your older posts, and saw the list of abx he's had, I was surprised cipro wasn't tried. It's a pretty well used one in males.

I used to work at a private mens health clinic. What is his personal hygiene like? Does he shower daily, wash hands after the loo etc? Is he sexually active?
The mixed perineal flora means the urine was somehow contaminated with flora/microorganisms found in the area of skin between the anus and testicles!

They should be giving him instructions when collecting a urine sample too. Generally- its mid stream, meaning he starts urinating into the toilet, then catches some (the middle bit of urine) in the sterile urine pot they give him.
In some cases (generally for STI checks) they'd ask to collect the first bit of urine that comes out.
Sorry if TMI, but he should also be instructed to pull back his foreskin (if applicable) before providing a sample. Some places also provide cleansing wipes to use beforehand, so its just the urine they are testing, and not all the bacteria around the foreskin too.

Has he been referred to urology as yet?

If you can't afford Harley Street try and see if you can get a referral to LUTS which is NHS but uses the same protocol. GP's can't refer it needs to be a hospital I.e urologist referral.

Many thanks to everyone replying it's really useful

He's not sexually active and does have very good hygiene and drinks plenty of water but we have never been told how to provide the sample ( not advised to pull foreskin back or use mid stream etc)

He has started taking the antibiotics already today ( Cipro) and so far no side effects but I guess they could start at any point ( or not al all) he's never actually had any side effects form any of the medication so far

He's been referred to paediatric again but appointment isn't until March!

I've made a complaint through PALs and stated that I think he should been seen by urology at this point

Dear cosietea, I'm very sorry to hear about your son. He needs assessment to see if he has an embedded or chronic UTI. This has to be done at LUTS (NHS), or privately at the Malone Lee clinic at 10 Harley Street or at the clinic at The Portland Hospital. Normal urologists do not know about this condition. Short courses of antibiotics may make the situation worse.
I'm going to post the link to the Artemis Cystitis website which has been recently set up by the Malone Lee clinic.
Your son is 16 and you need to find out if he can be seen at the clinics I have mentioned as he is not an adult. Go straight to the experts. Few GPs and urologists understand the condition.

https://artemiscystitis.co.uk/

I believe 16 is the earliest age they can be seen. Hopefully one day they will resume paediatric patients again

Thank you for the links, I will look at them all.

Has anyone had success treating a UTI successfully either via cipro or one of the private clinics?

I'd try to go for adult urology referral. If this is an ongoing problem he'll soon be too old (if not already) for paediatric urologist and might fall through the system getting passed from paediatrics to adult services.

Any anatomical issues, with flow etc? My son kept getting UTIs for a number of years, and having problems with the flow and urinary retention. Before he could have a first physical examination of his penis we had to do an emergency dash to A& E late at night as he was unable to wee at all, had to have an emergency op, it was a very traumatic experience.

He had an ultrasound back in January which showed debris in the bladder and a small retention of urine but nothing was followed up and they weren't that concerned

Flow is normal ( I think) he says it is

I used to get a lot of UTIs. I have modified my diet to exclude everything with high or moderate oxalate in it as it was irritating my bladder and tract and predisposing me to bacterial infections. I haven't had a UTI in almost 18 months. It's been like a miracle.

Hi OP - I have the exact same issue.

It’s so frustrating - can’t function at work. Always worried about peeing! The pain on top of it!

I’ve been prescribed more antibiotics today.

Trimoethoprim.

After that my GP has prescribed me Estradiol Vaginal tablets.

I have no idea what the vaginal tablets are going to do?

This thread has been so helpful.

I suffered for 2 years but Harley street sorted me out thankfully

@Teisen1990 what treatment worked please? Did you have an E. coli infection?

Has he been checked for kidney reflux?

@AlwaysGardening yes initially I'm the ultrasound in January. Consultant said there was no reflux and kidneys looked fine

E.coli and enterococcus
I took 20 months of full dose antibiotics then hiprex

@Teisen1990

Thanks, what antibiotics did you take please? And what is Hipex? Was it expensive ( if you don't mind sharing)

What did they do?

I will be booking them too, after the recommendation on here.

I took amoxicillin, trimethroprim and cefalexin. Hiprex is an antiseptic rather than an antibiotic.
I didn't consider the medications too expensive- about £60 for 3 months supply. Harley street is expensive for the consultations but you only go every 4 months or so

Thanks, he has actually taken all of those antibiotics but unfortunately still has the infection

Interesting about hiprex though, do you know if this prescription only?

The treatment at Harley Street is taken for months and months, that is why the previous antibiotics have not worked, they were probably not taken for long enough time, you need to be killing the bacteria in all its shedding stages which takes time

To be clear, I took these medications for 20 months continuously.
The theory behind it is that short courses don't work for embedded infection. Please read the work of professor Malone-Lee or CUTIC

Does the NHS not prescribe these medications long term then? I have always wondered why he has had only 5-7 day courses as max. He has had 9 different courses of antibiotics in the last 15 months

no NHS will not prescribe