hello. I just happened upon this site. I have Loin Pain Hematuria Syndrome, a very rare kidney disease that causes severe pain in the kidneys. I have pain in both and I have had this for fourteen years. I read someone saying that they have had it for eight. In 1999, I had a renal biopsy done and that is how it was discovered. It is very frustrating! Some of you may notice that there are doctors out there who do not believe in kidney pain! DO NOT LISTEN TO THEM! The kidney pain is caused from nerve damage around the kidneys. We have nerves everywhere in our bodies, including our organs. Mine was brought on by a history of infections since I was eighteen years old. I am now 41. The excruciating pain began when I was 27. It took over seven years to find a doctor willing to help me. My husband and I are still unsure it is Loin Pain Hematuria because I have had blockages, called Eschemia. I have passed many stones, but, the chemical makeup is blood, so, they are blood clots that look like stones. I have constant pain. I take some very strong pain meds now and that does help. I used to go to ER a lot, but, the longer I have had this, the more tolerant I have become to the pain. The best thing about all of this is that my kidneys are functioning well and I know that many of you on this site, that is not the case, and I feel so bad for all of you! The other thing, someone mentioned that they are tired all the time. Me too. I sleep about 10-20 hours a day! Pain makes you very tired! Hope this helps some of you who are new at this disease! Prayer helps the most!
I have Loin Pain Hematuria Syndrome 
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