Patient journeyONGOING

Not sure what to do next...

Stone Fighter #267B42Jun 13, 2026👁️ 2.0k❤️ 142

Strategy: Patient journey

Hey everyone, long-time stone former here. My journey started with primary hyperparathyroidism. Since then I've dealt with stones on and off. Had ESWL done, ran into complications, and now I've got a damaged kidney that's kind of baggy. Two years ago my last scan showed 3 stones in the kidney, one being 7mm sitting in the renal pelvis, and I haven't seen the urologist since. That's because the NHS keeps cancelling my appointments since doctors aren't available. I've been getting this dull achy pain and blood in my urine for a few weeks now. Should I try reaching out to the urologist's secretary or just wait it out? I really don't want to waste anyone's time but I also don't want this turning into something serious. Thanks in advance

Comments (5)

Stone Fighter #666C70May 5, 2026

Maybe try having a conversation with your GP first? They can at least check your urine, hopefully rule out any infection, and put in a request for imaging.

Stone Fighter #2EEB2FMay 5, 2026

Have you had your parathyroid removed?

Stone Fighter #761060May 5, 2026

Wow, our journeys sound really similar. My stones were also from hyperparathyroidism and I've got kidney damage from past surgeries too (not ESWL though) and I still have 3 stones left. I'd definitely call your urologist's office and let them know what's happening. You're showing signs that one might be moving, so getting on some Flomax and getting a fresh scan to see where things stand could help you stay ahead of an emergency.

Stone Fighter #28C522May 5, 2026

Yes

Stone Fighter #72299FMay 5, 2026

Ugh, two years without a follow-up and now you're seeing blood... that's exactly when you should be contacting your urologist, not when you're feeling okay. A 7mm stone sitting in the renal pelvis is in a risky spot, and dull aching pain with blood in your urine means something is probably shifting around. Don't wait for them to reschedule you — call and tell them you're having active symptoms. NHS backlogs are real but they tend to move quicker when there's active bleeding. The bigger pictu...

Stone Fighter #28C522May 5, 2026

Thanks for the detailed reply. Yeah I do watch what I eat, and I'm also diabetic so I have to be extra careful with my diet. Sometimes it's really frustrating but you just gotta do it.

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