Daughters mysterious bladder issue

[Kay1111]

My wonderful 4 year old daughter has recently started having bladder issues. 3 weeks ago I noticed she started running back to the toilet after having just finished a toilet trip to do another wee, I thought it was odd and I’d keep an eye on it. The next day full UTI symptoms came, burning when she wees and felt like she needed to wee all the time, so off to the doctors we went and the nurse dipped her urine but couldn’t find anything so gave us a 3 day course of trimethoprim. It seemed to help a little but didn’t cure her so we went back to the doctors and they sent off her urine to be cultured. Nothing could be found in her urine so they agreed to prescribe a broad spectrum antibiotic (amoxicillin) for 7 days. Unfortunately hasn’t helped at all.

So now we’re 3 weeks down the line and we have no answers, the doctors don’t know what to try. Her vagina isn’t red or sore looking, I’ve tried worming her and she’s on probiotics. We don’t use bubble bath or soap on delicate parts. She drinks mainly water and a good diet.

When she does a wee she feels like dragon fire (her words) and like she needs to do a wee straight away again. This feeling of uncomfort can last between 30 mins and 2 hours. She does sleep with no issues thankfully. I am worried she’s now holding in going for a wee as she doesn’t want to feel horrible again 🥺

I am desperate to help her, I hate seeing her like this, it’s really affecting her and I just want this all to stop for her! I have sent off a sample of her urine to a lab that does a longer slower culture to see if they can find any bacteria and we’re waiting on a referral to a specialist

Does anyone have any experience of this or any ideas of what could be going on??

Thank you for your reply, I think my daughter is the same as yours, I think she’s having bladder spasms after weeing so that medication should help her if it’s proven she’s got no further infection that’s upsetting her body.

Did she find that medication helped her or did she have to wait it out to find real relief?

The medication definitely helped. It works by relaxing the muscles in the bladder, and when that happens the constant sensation to pee goes away, and so does the pain.

I was told it can take about 2 weeks for the medication to start working but I saw results within days. We started on the lowest dosage for her weight and I was taught how to gradually increase it to find a dosage where the bladder pain went away and where DD would stop waking up at night.

I’m glad to hear that it helped your daughter, thank you for sharing your experience, it’s so helpful!

@Kay1111 you're most welcome. I remember being woken up by the sounds of my DD sobbing in the toilet because she was so tired but unable to sleep and it was heartbreaking. I was so relieved when we finally got a diagnosis and medication that worked. All the best!

Oh your poor daughter. It’s just awful when they’re in pain and you can’t fix it for them. Many tears have been shed in this house by her and myself! Hopefully we can see someone soon

That’s interesting, thank you for letting me know. How long would you say it lasted for your daughter?

I do tell her it’s ok to wee in the bath and I think it helps, or it at least makes her laugh as she’s doing something she isn’t allowed to usually lol

How are your daughters bowels ? Does she have any issues with constipation or could she be constipated ?
I get this when I am very constipated. I still poo small amounts every day but then I can quickly become constipated even within two days and then the bladder pain, burning sensations and constant weeing starts and the only thing that resolves it is laxatives for a few days until my bowels properly get moving again.

She’s usually very regular, we call 3pm poo o’clock in our house lol

The antibiotics has upset her rhythm but she’s still having a bowel movement every day

I don't know if this will help - its helped me alot with my painful bladder/IC, to avoid ALL acidic foods & drinks, citric acid etc.
This has stopped me from writhing around, irritation, feeling like I'm constantly 'busting', losing sleep, burning sensations when peeing and eyes streaming.
The main culprits for me are - Tomato Ketchup, tomatoes and all tomato related foods. Most condiments, anything pickled, milk chocolate, coleslaw, fruit juices either fresh or diluted, sometimes things with chilli's in, definitely avoid cranberry juice. Avoiding these things has helped me so much I couldn't believe it at first.

I would recommend this to anyone with bladder issues.
Also have a look at bladder health UK.

I hope you find some relief for your daughter.

I should just add that my flare ups from any of these foods are usually within 30 minutes of having any of them. Just something to keep an eye on incase it is any of these for your daughter x

So I used to get UTIs a lot and it got to the stage where my urethra was inflamed because of everything going on and i would get the pain symptoms even when there was no infection.

What I had to do was dilute my wee to the point where it didn't irritate me to give everything a chance to calm down. I used a product to alter the ph of my wee to make it less acidic (in the US - can't remember the name of it but probably would be something different here) Used that for about 6 weeks and have had no problems since - could be something similar?

Hope you find some answers x

That's what the Hiprex I've been prescribed does. I'm amazed with it.

I’ve been paying attention to her diet and drink but I can’t tie it down to anything unfortunately.

Thank you for your help though x

I do think this is probably what’s going on, everything needs to settle down and I think I remember reading years ago that the bladder is slow to heal.

That medicine you mention sounds really good, probably not licensed for 4 year olds though but I’ll ask when we got an appointment if there’s anything like that for children

Please check the latest NHS pages on UTI and so called ‘interstitial cystitis’, finally the NHS admits that the tests (dipstick and culture) can miss A LOT of infections, chronic embedded ones. Or it could be hormonal, like prolactin related. But most likely infection. Please look up online Professor Malone-Lee, he was curing people with long term high strength antibiotics (nhs tried to shit down his clinic but ppl were suicidal)

Get referral to the LUTS clinic Whittington, iirk. Or get privately DNA bacterial test from USA, it’s around £150. But Malone-Lee was only using fresh urine microscopy, very simple way to diagnose but it seems beyond the nhs (now this is the only clinic in the UK follows his protocols) he usually prescribed Nitrofurantoin, Cephalexin and Trimethoprim. Maybe you can find private GP willing to use his chronic UTI protocol.

You cam read online that dipstick tests and simple cultures are inaccurate. Dipstick was never meant for UTI diagnosis, and they have very low accuracy. I suffered since 29, I’m now 39, and you can get better healthcare in developing countries, from my experience. This chronic UTI has destroyed my life. As a child I had frequent UTIs and was too scared to tell anyone until I was hysterical from pain. I have bought my own antibiotics as I can’t afford to go to the LUTS clinic, I’ve lost my job due to this illness and its effect on my mental health and have no income and will have to resort to survival sex work. I hope you can help your daughter so she never has to suffer long term. There’s more info at cutic.co.uk and liveutifree

Oh and HIPREX. It’s a bladder antiseptic you can take long term. It raises the bladder ph to acidic.