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Today is LPHS (Loin Pain Hematuria Syndrome) awareness day.
As some of you may know Tes my wife suffers from this condition. Today she posted this on Facebook.
Loin pain hematuria syndrome... Today is LPHS awareness day so I thought I’d share with you a little about it. About 1500 of us suffer with LPHS world wide. Symptoms can appear at any age. All tests come back normal making it extremely hard to diagnose. Although my kidney function is normal I pass skin, stones, mucus and blood continuously. My kidney, pipes and bladder spasm often causing extreme pain. I live on opiates and not even a max dose of morphine takes away the pain. I do not have a UTI, but test strips show I do because my urinary system is so beaten up by all the pain my body thinks it’s being attacked and sends antibodies there to fight. I always have some pain, it’s never not there. Some days it’s mild, other days it’s the worst pain I’ve ever felt. (Labour and gallstones are my comparison of other extreme pain). Riding in a car, exercise, and laying down are some of the things that make the pain worse. Because of how rare LPHS is, not much is known about it including the cause and because the cause isn’t known there is no cure. To date there is opiates to take the edge off the pain. There is a very hard to get approved operation called an autotransplant (AT) it’s a major operation and is only done as a last resort.
Thanks for listening. X
As some of you may know Tes my wife suffers from this condition. Today she posted this on Facebook.
Loin pain hematuria syndrome... Today is LPHS awareness day so I thought I’d share with you a little about it. About 1500 of us suffer with LPHS world wide. Symptoms can appear at any age. All tests come back normal making it extremely hard to diagnose. Although my kidney function is normal I pass skin, stones, mucus and blood continuously. My kidney, pipes and bladder spasm often causing extreme pain. I live on opiates and not even a max dose of morphine takes away the pain. I do not have a UTI, but test strips show I do because my urinary system is so beaten up by all the pain my body thinks it’s being attacked and sends antibodies there to fight. I always have some pain, it’s never not there. Some days it’s mild, other days it’s the worst pain I’ve ever felt. (Labour and gallstones are my comparison of other extreme pain). Riding in a car, exercise, and laying down are some of the things that make the pain worse. Because of how rare LPHS is, not much is known about it including the cause and because the cause isn’t known there is no cure. To date there is opiates to take the edge off the pain. There is a very hard to get approved operation called an autotransplant (AT) it’s a major operation and is only done as a last resort.
Thanks for listening. X