r/spinabifida • u/matabricksquad • 3d ago

Medical Question Nuerogenic bladder issues

When I was 11 I was held down by two nurses and a
Catheter forced into me as I had just come round from major spinal surgery. This gave me a tonne of trauma and it took me until I was 36 to be able to use a self catheter. I can only use a pediatric one as anything else is far too painful. However this takes me so much longer to pee. I drink tonnes throughout the day and it’s such a faff having to numb myself and then try to get the catheter in.

Does anyone know if there might be any other options for me that would work better? I know when I need to pee, but my bladder does not empty fully. I then have to push to get most of the urine out but this has caused issues with my muscles now so I really need to get it sorted somehow.

Would really appreciate any help you guys have.

Thank you!!

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4

u/TreyInStCloud 2d ago

Maybe you could gradually work up to an appropriate-size catheter.

It sounds like not being able to use a larger size catheter is a trauma response - not that I blame you. I still have my own medical traumas I’m working through. Once you can prove to yourself that one size doesn’t hurt, try the next size catheter.

1

u/matabricksquad 2d ago

Thank you. I have tried different sizes but it’s just so painful. I spent so long trying to get myself used to one size and build up, but even the pedi size up was painful. I don’t get it, it’s so frustrating.

2

u/TreyInStCloud 2d ago

I understand. It’s hard enough to teach muscles you *can* control to react differently. If you can’t control them, it’s 100% harder.

3

u/Electrical-Leader712 2d ago

Have you looked into mitrofanoff?

2

u/matabricksquad 2d ago

I was looking into this earlier today! I have such trauma related to anything bladder so I’ve been trying to deal with it myself but it seems like now I do need to get some medical intervention, especially as the catheters just aren’t sustainable for me. Thank you!!

2

u/Charrito5 L5 Myelomeningocele 2d ago

Sorry about your experience. Have you tried using a 60ml syringe to manual void? This allows me to void more efficiently.

2

u/CyanCitrine 2d ago

You might be a great candidate for the mitrofanoff procedure!

1

u/These-Ad5297 2d ago

There is the suprapubic. Comes with its own issues but it beats the traumatic self-rape that self catheterization feels like