My life with medullary sponge kidney

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Hello my name is Cecilia. I was diagnosed about 2 years ago with medullary sponge kidney...
when I was 9 years old I passed my first kidney stone and I remember it like it was yesterday... my parents didn't believe me when it was happening as I was one of them kids that liked to cry wolf a lot... they did take me to get an ultrasound the next day tho and we were not told anything was wrong so I have gone threw my life without knowing about this disease... I didn't pass another stone till I was about 15 and the silly thing was that I only passed one when it was that time of the month each month so I knocked it down to really bad periods each month the pain was so bad I would be puking and crying really bad but I never even thought it was my kidneys... I had UTI's all the time and never knew why.... so when my first child was 3 it hit me really hard I was in the hospital every 2 or 3 days if they didn't keep me ... no one could tell me why I was passing so many stones and I went threw doctor to doctor to doctor for a few more years my son is now 9yo and I had my baby girl just over 2 years ago... with the new doctor I have now he was so shocked at the amount of stones I was passing and all my hospital visits he wanted to look in to it more and see if there was anything we were missing... well he went back to when I was 9 in my medical files after me telling him about the first stone I can remember passing.... he found my diagnosis of msk and asked me if I had known about it... I had never even heard about this disease till that day... I was dumbfounded we both couldn't believe I have gone 20years without knowing they found my msk and that they never told me or my parents about it at all... so for the past 2 years I have been seeing specialist after specialist and all they can ever tell me to do is drink more water... unless the stone is stuck... I have had so many surgeries to remove stuck stones I can remember them all but I do know it’s been more then 20 surgeries at the local hospital in my town...but I have only had lithotripsy once and pray I never have to get it again ... lithotripsy is a surgery where they use ultrasound waves strong enough to shader the stuck ston. I have changed my diet over the years a few times and nothing seems to help at all... the only thing that has made my life any easier is pain medication... I take a daily dose of dilaudid slow release twice a day not including my breakthrew painkillers for when I'm passing a stone... most people with msk have no idea what or how terrifying life will get as your disease progresses with age. Plus the depression and feeling of being almost compleatly useless when you live with such bad chronic pain that no doctor can explain as to why you hurt all the time and then the carelessness of doctors and kidney specialist that don’t seem to care or the lack of helping you understand what you are really dealing with and how it will only get worse as you age. Having an amazing support system is vital to living a somewhat normal life with a disease that only seems to be a horrible joke of extreme torture That no doctor cares to look in to... and then having the only people that are supposed to help you keep turning you away saying your lying and there should not be any pain unless there is an active stone passing and discharges you only to go home still in the same pain if not worse that sent you to the ER to begin with and over the years of being treated like a drug seeker and not getting the help and support from doctors the only people that should be the largest support system you can have treats you like your stupid and don’t know what your talking about at all.... I truly hate bad pain days where I really feel I should be going to the emergency for help and possible pain control and they tell you your wrong and your not in pain and that they are not going to help you or even look in to any other reason for the pain.... I hate hospitals