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Chronic Kidney Stones starting when I was 19 years old, need help/advice!

Posted , 5 users are following.

violet29718
violet29718

My name is Violet and I am a 21 yr old female. I've been passing kidney stones on a daily basis for two, going on, three years now. I live near Fresno, CA and I have been to numerous doctors (primary care, urologists, pain mgmt, etc.) and I haven't received any solid answers as to what is causing my stones, how to treat them, nor have I found a pain mgmt doctor to take me on. I am at a place where I can barely function due to the unbearable pain I am in daily. This has taken over my life and literally destroyed all of my dreams. The internist who took me on recently has discovered that my condition is genetic and not based on dietary issues. His answer is that there seems to be little that can be done for me. I've been to several urologists in town, including the doctor who is considered the most talented urologist in town. He told me it's genetic and I'm screwed. Nothing can be done. For a time, I believed this. I thought my kidneys would fail and I had zero chance of ever having a normal life again. Then I did some research and found that research is rare on this condition but it is out there and there are treatments and things that can be done to help. I still can't manage to find the right doctors though. And the pain is so bad I spent the first year and a half going to the ER every month when I had gotten so run down and my heart had gotten so amped out that I was in very bad condition. Now going to the ER has no use for me. Nothing they can give me there for pain will help. I am in misery. Does anyone here have a similar situation going on (if so, I'm sorry for you!) or do you know someone who does? Do you have any answers about what could be causing this, if anything can be done to help other than drinking cranberry juice or pure lemon juice or all those remedies that haven't ever helped me. Or Flomax. Which made it more unbearable for me cause my kidneys are so constantly full of stones that it made me pass them at a faster rate but that meant I never had a break in between them. So the pain was more constant. I need something concrete. I'll take any advice or information anyone has. I am desperate. I'm young. All I really want is to be able to go to school and work. RIght now I'm barely holding down a part-time job and going to school online. I spend my days puking and shaking in pain. Please. Any help is so greatly appreciated. 

0 likes, 3 replies

3 Replies

  • tempestwolf
    tempestwolf violet29718

    Posted

    im shocked they have not been able to find a reason.  I  Have genetic issues as well. a few people in my family had stones when they were younger.. i wont ever stop making them. I usaualy get them once every few years... first time in my life i made more than one at a time.. I  Just passed a 7 mm and a 3 mm a week later. and i still have a few in me.  They calcium based.  im going  to get a ct scan monday to see how many i have and get them removed and see if they can give me a answer whats causing them. I think it was the prepaired foods i was eating. frozen meals and such and not drinking enough water. im not fully sure thou Im not a dooctor sad  The uroligists in my area are supposivly top rated. so if i get any answers ill definatly share them with you. though my  doc said it coudl be bladder cancer i said yeah right. makes me wonder if hes a numbnut i said one step at a time lets find the stones first
    • simonthethird
      simonthethird tempestwolf

      Posted

      "Yeah right" ... I agree with your assessment - I doubt if there's any direct link between stones and bladder cancer.

      If s/he was relly in the slightest worried I am sure s/he would have taken a peek inside with a scope - that's a pretty simple quick proceedure

    • violet29718
      violet29718 tempestwolf

      Posted

      Hello! Thank you for taking the time to respond. I'm endlessly sorry to hear you've had repetitive stones. It very well could be linked to what you're eating. In terms of water consumption, not enough doesnt cause them but let me put it this way, for some ppl if you drink a ton of water it forces the stones to pass quickly and if you're lucky they might even break up and be less painful. For myself, I've drank A LOT of water. It doesnt seem to help much. Anyways, I would be very grateful if you learn anything and you would share with me. I'll do the same. I'm contemplating traveling to San Francisco, CA. UC San Fran has one of the best medical centers. Also there is Berkeley and others. My family has had luck there with other conditions. Theres a doc there that specializes in chronic, recurrent kidney stones. He's done a ton of research too. If I get there and get answers, I'll share immediately. Hang in there hun. Its rough. We all know that.
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