Daughter's mystery "pee problem"

[Whatthewhatnl]

Has anyone experienced this before?

My 9 year old daughter has what we are calling a pee problem. After peeing she has a funny feeling that really irritates her. She says it's not a pain, more of a feeling. It's not a urine infection and she's also been tested for candida and other bacterial infections - both negative. She's also had to drink and pee on a timetable to make sure her urine wasn't too strong and irritating the bladder, that didn't make any difference.

She is extremely sensitive and has some sensory processing difficulties so that is making the problem more intense. The "feeling" doesn't go away for between 30 minutes to 2 hours and she will be sitting on the toilet all that time. When she does eventually get off the toilet she freaks out, screaming and crying and frantically wiping.

We're going through the diagnostic process which is taking time and in the meantime she's been off school for weeks. The doctor's think it could be psychological but I don't think we've ruled out enough physical causes yet.

If anyone has any experience of anything like this, I'd be really grateful to hear about it. We're feeling a bit desperate!

Have you checked for worms?
I know it sounds weird but years ago a little girl I knew had a weird problem and after lots of tests it turned out to be worms.

Why say it’s not a bacterial infection? Standard hospital cultures and routine dipsticks miss 80% of infections according to my consultant who’s an expert on infections. I would push for a course of broad spectrum antibiotics.

If that sorts it you know it was an infection. If it doesn’t sort it you won’t have done any harm.

Does she feel like her bladders not quite empty? Can she change position after peeing? Lean forwards slowly, or backwards if she tends to lean forward.

Another one here wondering if it is worms - my niece had these symptoms and it turned out to be worms - very easily treated by stuff from the GP.

I've suffered with this my whole life and nobody knows what it is! Currently in hospital now and they're only taking notice because I'm pregnant, when I was 13 my doctor wouldn't even dream of referring me to any kind of specialist until they carried out a full STI test, at 13 I was so embarrassed and distraught, I've had cameras in my bladder, scans on my kidneys, everything you can think of and there's no end result as of yet. I'm 20 now, so I've learnt to manage when to go to the toilet and how much I need to drink etc..

Thoughts are with her I can really say I know exactly how she feels xxxxxx

She did have worms a couple of months ago but she was treated. Perhaps it's worth doing another treatment.

Is she on any medication that could be causing the problem? Is it like a tingling nerve endings feeling?
Not the same thing but DD had some issues and was advised to not drink squash particularly blackcurrant as it irritates the bladder.

I think worms is possible too. Maybe bladder stones?
Has she had a cystoscopy? I would want them to do that to do that to rule out any other physical causes before they decided it could by physchological

MrsJoshDun I didn't know that and I will ask them to do it again as it was a while ago and ask for antibiotics. Docs are reluctant to give prescribe them these days though.

WhiteDiamondX Thank you. I'm sorry to hear about your experience it sounds awful. I hope they finally find out what the problem is while you're in hospital.

teabag20048 No she isn't on any medication. I'm not sure if it's a tingling nerve problem as she finds it very hard to explain. That's partly what is making it so difficult.

upsideup no cystoscopy, not even a scan. I dont really feel they've done enough tests yet to suspect it's pyschological which is really frustrating

I can understand drs being reluctant to prescribe if they don’t have a positive result but when there’s a child sat on the loo for two hours a day screaming and crying they need to consider the individual rather than blanket rules from the CCG and others. One course of abx is not going to make that individual resistant to abx.

I would definately be requesting and pushing for some kind of scan, what possible pyschological causes and treatments are they suggesting?
Is the feeling external or internal? And does it not hurt while shes actually peeing or just after when she is finshed and stands up?
I hope you get to the bottom of it and she can feel better soon.

A cystoscopy? In a 9 year old with the problems described above? Dear god, I've heard it all. The reason for not diving into antibiotics blindly is partly because UTIs are the place we're seeing the highest number of resistant bugs in kids, but largely because the last thing you want in a child with irritated undercarriage is thrush.

From your description, she spending ages sitting on the loo, because she it doesn't feel right? Yes, worms is a likely idea. But failing that, if you sit on the toilet for ages, you start squeezing out extra drops. Without wiping. So urine sits on some very delicate tissues for ages, before wiping. Which irritates the area. Vicious cycle ensues.

Check for worms. If not worms, suggest next step is a decent barrier cream. Make sure she isn't at all constipated, as that can also majorly screw up sensation.

Thank you for all your suggestions, I've got a few things I can suggest to the pediatrician.
upsideup I will definitely be pushing for a scan. The feeling is internal and it's after she's finished peeing. I think the doctors think it could be some kind of anxiety
nocoolnamesleft Yes she spends ages sitting on the toilet until "the feeling" goes so you're right there could be extra drops that are irritating. I do try getting her off the toilet as soon as possible but she freaks out

It’s probably not the same thing I had, but all throughout my childhood to my late teens I would suffer from something very similar to this. It wasn’t painful, just annoying so I never went to the doctors or told anyone about it and just thought it was “normal” UNTIL I watched an episode of embarrassing bodies, where a little girl kept getting UTIs and they basically said to cut blackcurrent squash out of her diet, I tried it and haven’t had one since.

No clue if this will help you or not but thought I would share anyway lol

Is she trying to get 'every last drop' of wee out before she gets off the loo ? which she wont be able to because we are producing /collecting urine all the time , she may be irritating her bladder or urethra which sends signals making her think she still needs to wee
more drinking and less time sitting on the loo may help

I could have written your post word for word last year.
Turned out dd DID have an infection and that combined with sensory issues and being incredibly highly strung lead to some horrendous issues with the toilet. It completely ruled our lives for a while.

Once she’d had the ABs it calmed down but she’s still very anxious around the toilet and the slightest strange sensation worries her.
She’s currently saying that it hurts to move her legs after she’s had a wee but thank goodness she seems slightly more resilient than she was before and is ‘getting on with it’ rather than sitting on the loo crying.

Good luck-hope you get it resolved

Have you tried thrush treatment just to be sure to rule it out?

Thank you for your messages, sorry I haven't been on for a while. Onemorecornetto my daughter has sensory issues too and we were already going through a pyschological diagnostic process. Because of that and the fact that this problem has made her tactile defensiveness worse so she won't tolerate wearing any clothes at the moment, the doctors are convinced it's part of that. We have a meeting tomorrow to hopefully get the results of their evaluation. The whole thing is beyond frustrating.

Would love to get updates as currently going through this

My daughters going through this too, how’s your daughter doing?

we’re waiting on a referral for a specialist now

@Kay1111 Sadly No update. Urologist appointment showed no issues. At a loss right now. Who have you been referred to ?