At what age is/was your stone formation... - Cystinuria Support
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Middle to late teens were the very worst while waiting for a diagnosis and then on into early 20’s, but I have always had an awful amount of pain. Now at nearly 60, i feel like its as bad as ever and I drink gallons of fluids every day. Atm I have a lump goin through (feels like a housebrick🤬😥) and its driving me insane...been going on and on but I can feel it moving thru the system. It’s impossible to get comfortable and cant even bear anything touching my L side, not even the slight pressure of the elasticated waist of trousers. Just pray it goes thru quicker than some others as its harder to get up and down on the floor🙄🥴💊💊🤤🤔
Interesting survey as to number of stones in the age range. Would say may be we either get more sensible as to what /how much to drink when older or there have been no surveys carried out over cystinuria patients entire life. It is thought I was born with a stone and at 66 had one blasted this year so it’s life long management in whatever way suits the individual.
End of 2017 was the worst stone formation at 2.5cm which I had to have radiology to break it and the procedure didn’t go well. This followed another two surgery after to remove the rest of the stone and to have a stent put in.
I would regard myself as atypical, as I never had any symptoms that caused me distress. My condition was identified more by luck
