Hi, my name is Julie I have been dealing with this for 8 years now. I couldn't tell you how many specialists I have seen over the years without any answers. My brother-in-law, who is a family Doctor just called me to tell me that with all of the medical reports he has received on me, he found, what he thinks is the name for what I have. Gross Hematuria Loin Pain Syndrome. I have not had clear urine for literally 8 years now. It has goten worse over the years and now I receive iron infusions for the loss of blood. I don't have one moment without pain, and at times it is so unbearable that I wish I were not here. Noone has taken the time to find the answers for me. Like others I have read about, they give me pain meds that NEVER totally eleviate the pain. Tordol helps, but the doctors have been very reluctant to allow me to have it. I have described my pain as worse than labor pains, and have never heard anyone other than myself describe it that way, until coming on this site. I have gone through jobs due to the "sick" times. I feel like I should be excited about this discovery, but am so tired of trying to explain my symptoms. Please, someone give me some answers on this.
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I two was told in march 2008 that I have loin pain hematuria syndrome. I was also diagnosed with Chronic fatigue syndrome in 2003. I have done much reading on both and I think maybe it could be autoimmune related. On my most recent visit to the urologist he mentioned that maybe my flank pain was due to an inflammatory response. He mentioned it but did'nt do anything about it. Anyway gotta go I will respond later.
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My daugter was diagnosed at the Mayo Clinic three years ago, but has had the disease for 4 years. It has changed our lives completely, she cannot work any longer because of the severe pain, she is now on long term disability. I would absolutely love for someone to research this disease, there are not many people with this disease, but it is such a painful one that it certainly needs to be researched, so there is hope, something to see at the end of the long tunnel. I cannot tell you how many times she has been to the ER or to the hospital in the last 4 years. She takes many meds and of course, along with that some conplications, like constipation. More bad days than good, but we celebrate on the good days, that is what keeps us going! May God Bless you and may they find a cure soon.
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