Undiagnosed Chronic Kidney Stones Flare-ups

I'm 16 years old and suffering from what I've been told is medullary sponge kidney disease. I have been to countless doctors, including the mayo clinic in Jacksonville, Florida, Children's hospital in St. Louis, and many local hospitals. Every doctor that I've seen has thrown around many ideas of what my disease "could" be, but none of them have ever actually diagnosed me. It started out as a kidney stone two years ago, had gotten better on and off for the past two years. I had always had at least one kidney stone every six months or so. We call my kidney stone's "flare-ups" because when I get them, it is impossible for me to control the pain without being hospitalized. Also, the doctors have said they are not entirely sure that my pain is kidney stones. The pain is a burning, stabbing pain that goes down my right backside and to my lower stomach on the right side. The stones are calcium-oxalate and are usually small. In the past six months, I have been passing a steady amount of "gravel" in my urine, which is basically small stones. Therefore, I am in pain all of the time. I have been put on countless medicines such as potassium citrate and hydrochlorothiazide. Not to mention the pain medicines, I have found that only Percocet and Norco can even touch the pain. And Phenergan helps with the nausea sometimes. I throw up from the pain almost every other day; Some days I am unable to get out of the bed, eat, walk, and keep anything down. On top of all of that, I am unable to urinate on my own. I have to use a straight catheter 4-5 times a day. I have been unable to go to school, and have been put on homebound through my school. All of this has been very frustrating and we basically have no answers. I have recently had a cystoscopy to look at my bladder and ureter. The doctor said it was completely normal, other than that my ureter tube is smaller than normal. I need some way to cope with my pain and get a better quality of life.