Supra pubic catheter option as my 12 year old not managing intermittent catherisation

[Charlie5angel]

Hi I was on here a a couple of months ago, my 12yr old daughter was trying to self catheterise herself but unfortunately it's caused her so much pain, anxiety and she was just not coping with it at all, we are on a waiting list to have a supra pubic catheter fitted for a couple of months to help her empty her bladder as she suffers from bladder retention, just wondered if anyone has had any experience with dealing with these, she had one before but that was for one day for urodynamics testing, this one will have a tube with a open/shut valve, we are really hoping it works for her as In between her not being able to go, she has gushes without warning so obviously she is wearing bladder weakness pads and when in bed she wears tena lady extra small pants but it's like the heavens opens when she lays down which is quite distressing for her but never gets any warning, we were told she has a rubbish emptying bladder which does not want to work, but it's crazy because if she actually wants to go it's just stop start tiny trickles and she is in pain but some days her first wee of the day isn't until about 6pm which is just awful, I feel so helpless for her, if this does work then at least they move on with a more permanent solution for her. Thanks for reading xx

[ERIC-Charity Partner]

Hi Charlie5angel, we're sorry to hear that self catheterisation has been so traumatic for your daughter. The supra pubic catheter will give her a rest from having to do this. From your description of what happens when she lies down it sounds like she might have a bladder muscle weakness. Has anyone mentioned Biofeedback as a possible treatment to help strengthen her bladder muscles and help them work together again? Normally before you have a supra pubic catheter fitted you will have an appointment at the hospital to go through what will happen on the day and explain how to take care of the site of the catheter. The supra pubic catheter will help you daughter empty her bladder but unfortunately it won't stop accidents happening. However, if you're daughter knows she gushes we when she lies down she can use the catheter to empty her bladder before she does this to lessen the amount of wee she passes. Natalie@ERIC

[Charlie5angel in reply to ERIC-Charity]

Thank you very much for your reply, it's so difficult as there aren't many support groups near me at all that deals with anything like this so your support is so very much appreciated.

My daughter had urodynamics in September with the cystoscopy and they offered us biofeedback training, she has an unusual shaped uretha but we are not sure if that was down to her surgery she had 3 years ago, she has a uteretocele which resulted in her having a hemi nephrectomy (half kidney removed) as she had duplex kidneys on right side but it had very poor draining.

Unfortunately the biofeedback training was unsuccessful so that was why they suggested the self catherisation but after several months, it's just been so very stressful for her, she really has tried her best with lots of support from everyone at the hospital and me at home. The consultant hopes this help her and like you said it will definately give her a welcome rest from the constant leaking and pain she is suffering at the moment.

Some days it just doesn't make sense, the school are constantly calling me as she struggles to walk to far without her leaking loads but she can't physically push out a wee till gone 6pm some days, I feel so sorry for her, I can't even imagine how it feels as rest of us take it for granted how easy it is just to go for a wee and not think about it.

Just wish the hospital would hurry along now with a date so we can get things sorted for her.

Thanks again, hopefully we will hear back soon xx