My Medullary Sponge Kidney Story

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A couple of times as a child I got a few urinary tract infections and it was never a very big deal, when I was a teenager, I got a couple of kidney stones.  When I was pregnant I got kidney stones with each pregnancy, each pregnancy seemed to come with more stones and more pain and more hospitalization.  My family would tell me that I was harming my unborn child and just wanted the attention.  The pain was unbearable and nobody ever knew why I would get these kidney stones, then while pregnant with my daughter I got severe kidney stones and kidney infections and had to live on morphine and vicodin my entire pregnancy.  I was so afraid she was going to be born addicted to pain medicine.  She was born small but very healthy and not addicted to pain pill but child services came to my house to try and find out if I was a drug addict, by this time, my stones and infections were gone, I was no longer on any medications and everyone was healthy but it was humiliated, especially knowing that my family constantly thought that I just wanted the attention and there was nothing wrong with me.  Come to find out, one of my family members had called child services on me, my husband and our then three children who had struggled to survive my pregnancy with no help from them while I was in the hospital for over half of the pregnancy.  A little over a year later, I had another small kidney stone and had to go to the emergency room, this was my first one without pregnancy.  The next morning, the radiologist called me and said he thought I had Medullary Sponge Kidney and that I needed to call my doctor and have a follow up.  He also said I had a large stone forming in my other kidney but it was in the kidney and safe.  I started to get answers that day and little did I know, started my long journey of lithotripsies and pain.  That large stone stayed in my kidney for 4 more years until it tried to move on it's own at 13mm and got stuck, requiring 5 lithotripsies to break up.  That was a nightmare.  I now have a great Nephrologist, good Pcp, am still looking for a good urologist and a pain management doctor who doesn't believe that organs have nerves, despite mounds and years of research of proof otherwise.