Unknown reasons for urinary incontinence?

[Piper2017]

My daughter had urodymamics done last week and got the results that she had NO overactivity.we all thought that it would show overactivity so it was a shock as she has 10+ accidents a day.Doctors had said we would either proceed with Botox or PTNS after the urodymamics but now that her bladder didn't show overactivity neither of those options are open to her so now she has to go in for a cystoscopy under general anaesthetic to see if they can see something that they have missed.

I just feel we are over 4 years trying to get her help for her urinary incontinence yet we are still none the wiser as to what is even wrong with her,it's so frustrating

[SallyandPaul]

I was waiting to see if anyone had any pearls of wisdom. I haven't really but just wanted you to have a reply. I'm so sorry that its all so frustrating and seemingly hopeless. I do hope that you get some joy soon. I presume that you have tried no soaps bubble bath etc. Our daughter baths in antiseptic oilatum but that's really to prevent utis from encopresis. Also maybe check your washing powder but I'm sure that you know all this,sorry. Do wish you well though. Good luck X

[Piper2017 in reply to SallyandPaul]

Sally and Paul, I appreciate the kindness of your reply not wanting me to be without a response.my daughter doesn't suffer with UTI's but I do use as many unfragranced unperfumed products with her and her clothes.Good Luck to your daughter too x

[bugs_bunny]

Piper2017 I too can't help any but don't want you to feel alone. My DS is 10 and has been on and off daytime incontinent for ever. He has been tested for overactive bladder and that doesn't fit and his kidneys etc are all fine. I am more and more convinced it is linked to his hypermobility, growth spurts and anxiety, but the incontinence doctor says that these are not valid reasons. So I've given up trying to fix him. We make no deal of the fact he wets his clothes and on occasion his bed. Fortunately the school he is at now are great (although we had to move schools as we were made to feel like he was an inconvenient child at the first). I look forward to the day I don't have to carry a change of clothes round with me and have to abandon shopping to run and find a loo, but whilst I have to, I will.

I hope you get the support you need :o)

[Piper2017 in reply to bugs_bunny]

Bugs Bunny thank you for your reply.i too like you look forward to not having to carry spare clothes everywhere we go,I think it would be better than winning the lotto-completely life changing to not have to think constantly where's the nearest loo.good luck with your son

[Heidi_hi78]

Hi piper2017 as you can read on my story's the pain if it all .we now 3 years forward this Friday bladder assessment again on my daughter she had a ultra sound scan 3 weeks ago we see where we go from Friday .was talks of urodymanics studies .see what gets said Friday .3 years of fighting complaints had to go in .have you asked for a m.r.i scan ? Keep me posted please with your story .x

[Piper2017]

Hi Heidi, it seems like a very long and hard road we are all on with incontinence,there never seems to be a quick fix.i personally think that there are not enough specialists in this field.she has not had a MRI.i will let you know how the cystoscopy goes.i hope your appointments go well.

[MrsSquirrel]

We are just awaiting results from urodynamics, but initial feedback is its not overactive. Retains quite a lot - 100ml. Lots of accidents - 15 ish a day.

And the constant thinking of toilets when out, pads, wet clothes and bedding.... Wonder if we will go via cystoscopy next? We have been asking for help since our son was 5, he will be 10 very soon.

[Piper2017 in reply to MrsSquirrel]

My daughters consultant said cystoscopy is what they do as the last thing,when nothing else works and from what I heard from other people you always get a definitive reason for the incontinence from cystoscopy so maybe if they are not offering it to you could ask for it?.as I well know 5 years is a long time to not know why it's happening.

Cystoscopy gave us answers but unfortunately my daughter doesn't have a solvable problem.