Suggest Treatment For Tenderness, Flank Pain And Swelling Due To Kidney Infection

I was diagnosed in March of 2010 with medulary sponge kidney disease since then I have undergone 8 surgeries, multiple UTI s, several kidney infections, multiple stents in place. During one basket extraction procedure the tube to my kidney to my bladder was damaged therefore I am on able to pass the stones and require surgery every time. I m trying to find new information in dealing with this disease, most doctors will tell me I m not in pain unless the stone is moving, well I ve been dealing with this for the last 5 years and I can tell you I am in a lot of pain regardless if the stone moves, there s tenderness, flank pain and swelling. I guess my real question is how do you get the appropriate care when the doctors don t believe you re in pain?