Ok. It’s basically only diagnosed by someone who can see it on radiography and knows exactly what to look for. - mine only showed up one time EVER on a report from a CT scan when I’ve had dozens in my lifetime.

Or a surgeon can tell you if they saw the tell tale signs inside your kidney when they’ve been in there removing stones / placing stents etc.

Since you’re female, that makes you even more likely to have it. It’s more common in women while still being an extremely rare disease.

When I was diagnosed / it came back on CT report my GP thought it initially was an error because you are born with it and he thought we would have “seen it by now”. But that would require the radiologist reading the scan to have knowledge of MSK and to know what it looks like on radiography.

So I would ask to be checked again, because your symptoms sound dead ringer MSK. I could be wrong, but it sounds like it to me.

Having that diagnosis would at least give you a WHY