Best Advice: What is the advice you wish... - Cystinuria Support

Cystinuria Support

Best Advice

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What is the advice you wish you had been given when you first experienced symptoms/were diagnosed?

For me it would have been to ensure that I was being looked after by real specialists (rather than general urologists)....and also to drink!

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Neil, certainly agree with you about being seen by specialists. Something I was strongly advised was checking for any blood in my urine. I don't suffer any symptoms of pain, so can't use that as an indicator of any new development. Therefore, I have to regularly check for other evidence. Good discussion.


I been diagnosed beet late to be honest,because I have stones removed from 2003,and been diagnosed with cestyrian in 2012 and in 2017 been transferred to specilist urologist in gyes hospital now they taking good care of me I born with this by my parented both of them haven’t any symptoms of stone but I haved. Is not easy to deal with the symptoms but I don’t have chose only to pray.


I just wish I’d been told by my so called dr that I actually had this disease instead of a radiologist letting slip with “well with cystinuria there’s no cure!” To which I replied “whoa, what’s it called?”....... I learnt more from Cystinuria support network in 15mins online than in the previous 20yrs of going to Guys including 6 open surgeries cut from front to back! I don’t have a lot of faith in the UKs so called health system,