This patient support community is for discussions relating to urology issues, benign prostate disease, penis curvature, cystisis, pediatric urology, prostate, sexual dysfunction and urological cancers.
Do you, as a urologist, believe the medical community is getting any closer to recognizing the pain that some patients with Medullary Sponge Kidney suffer from even when/if they don't detect a "stone in the ureter"?
I just had 15 stones removed from my left kidney after having an additional 2 stones over 10mm stuck in ureter. I still have the same dull aching pain that feels as if someone has hit me in the flank with a baseball bat.
My left kidney has at least 10 more stones and my right about 20. Years ago the pain was intermittent and I could tough it out, this last year I am taking ibuprofin, aspirin, or a prescribed pain med daily.
Not sure if you are still on this site or not but I too have MSK and I have it in both kidneys, although the right one gives me more pain. I just had a follow up with my urologist yesterday and there is no explanation for the pain. I have been over and over this, to took me 10 years to get someone to even diagnois me with this condition and from what i have read on different forums almost everyone that has this and Nephrocalcinosis have "unexplained pain" and there is nothing that can be done except removal of the kidney and function has to be below 30% or a spinal blocker, I am going this week to have test ran for actual function, i have NEVER had this test done before but have been dealing with stones and kidney infections and other problems since I was 16 and I am now 32. Good luck and I hope you are doing well
I found out that I had MSK when I was 16yr old and I am 40 now. I have pain all the time in both kidneys and I have it even when there is no stone, blockage, or infection. Most Dr's think that I am at the ER to get narcotics but I'm not. I just want to be able to function and be active for my family but most if not all Dr's just cant grasp how painful this can be at times. I cant take a long ride in a car for long, cant stand and wait, and I always need to be near a restroom. I'm not asking much, I just want a better quality of life while my grandchildren can remember me. It is definitely a misunderstood and misdiagnosed most of the time. So all I can say is keep up with a good urologist and make them listen and understand that just because you cant see it, doesn't mean it doesn't cause great pain.
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