new diagnosis

[Katycodfish]

After having experienced passing slightly pink urine I visited my GP who ordered a CT scan. This identified several large staghorn stones in both kidneys. The Urologist who was carrying out a cystoscopy to check all was ok in my bladder told me he would need to refer me to have the stones removed. He led me to believe this was a simple keyhole/laser operation. I thought the stones would be blasted and all would be ok. The more I have researched the procedure the more I understand it is not simple and carries high risks. I am on an 18 week referral so a long time to be worried. Since listening to a podcast and reading information I think I may have Cystinuria, hence I have joined this site.

[MomofCyskid]

Hello. Sorry to hear about your diagnosis. You must request a 24 hour urine test for them to test your cysteine levels to confirm Cystinuria, that's the quickest way. A genetic test takes way longer. I hope all works out for you.