My name is Ivy Goss. I am a 37 year old mother of 4.Recently I was diagnosed with a disease that is very uncommon; Loin pain-hematuria syndrome. Not much is known about this condition. There are no known cures. Once known as idiopathic hematuria, LPHS simply means you have blood in your urine, and pain in the kidneys and, or lower back, with no known explanation.
My mother and sister have the same symptoms, yet no diagnosis for the condition. They live in Pennsylvania. I live in Washington State.
Pain pills may be given to help make you more comfortable. In my opinion, this seems a lot like playing bare foot in a snowstorm when you have a common cold. Every pain pill offered to me has had an adverse effect on the kidneys or liver. Some of these pills have an addicting factor.
There have been days recently that my pain is at a disabling level. If not for the patience of both my employer, and fellow co-workers, unemployment would be likely.
My 16 year old daughter exhibits the same symptoms, blood with no infection; being the first sign that she may also have this disease. I am on a personal mission to discover what triggers this disease, and how to control the symptoms in a way that is not harmful to the future health of me and my daughter.
Meeting with a fitness trainer is at the top of my list. Diet and exercise will be the first avenue we explore.
I HAVE THE SAME, I AND MY DAUGHTER, MY MOTHER AND MY GRAND FATHER HAVE BEEN BORN WITH THIS DIEASE AND THE FIRST BORN SEEMS TO GET IT FIRST. I WENT TO CLEVELAND CLINIC AND HAD AN AUTOTRANSPLANTATION DONE IN 2006 BY DR. MIRHI DESAI WHICH NOW IS IN CALIFORNIA I WOULD GIVE HIM A CALL HE IS THE BEST 3238653700 UNFORUNTITLY ITS NOT A CURE AND OFTEN THE SYMPTOMS RETURN BUT I AM 30Y/O NOW WITH 3 CHILDREN BESIDES MY 8Y/O HAVING IT, IT MAKES LIFE A LIL EASIER TO DEAL WITH! I WISH SOMEONE COULD FIND A CURE SO I DONT HAVE TO WATCH MY LIL GIRL GO THRU WHAT I GO THRU EVERYDAY ANYMORE…… I WISH YOU THE BEST!!!
Hi Ivy, Lynn & Annie,
I to live in the UK, and have just been diagnosed this morning actually, after 20+ years in pain. Reading on the internet i don’t seem to be in as much pain as many, which I am grateful for. However as with Annie my next step is vititing the Pain Management Clinic for lifelong pills that I’m sure will come with an array of side effects and surely can’t do your kidneys/liver any good in the long term.
I was wondering whether you have any updates Ivy on your situation and how you got on with the diet and exercise route? I am sure that there must be a natural alternative out there somewhere that helps this condition.
Jenny
Hi I have been living with Loin Pain Hematuria Syndrome for 5 1/2 years and I have found a alternative medicine treatment that helps a little. Self hypnosis and biofeedback I tried this when I was searching for relief. I still have pain and I find a little relief with neurontin taken three times a day. Dr. Lee Hebert has been the most beneficial to me. Hope this information helps everyone and please fax me with any new treatments.
Hi Ivy,
I am in London, england and this has hit me too. On June 6th last year I had an episode of frank haematuria and went to hospital, they suspected a stone but after many tests and a ureteroscopy, I was diagnosed with LPHS and sent home with painkillers…practically written off.
Not happy with this I complained to my doctor who referred me to another specialist at a well known hospital in London. He said he needed to do another ureteroscopy and i had that done last month, again i have now been almost written off. I am under the care of a pain team at the hospital who want to fit me with an implant which will mean i can zap myself when bad. The tablets they gave me are pregabalin, diclofenac and a regular analgesic. Diclofenac is related to aspirin and gives me terrible acidity and I am allergic to gaviscon and alike antacid meds. Pregabalin wipes me out and I just sleep all day.
I can no longer work and the tablets only dull the pain slightly.
Our national health service means that as soon as they realise they cannot fix me, i am sent home with pills and forgotten about.Please wish that the USA does not end up with the health service it is currently pushing for as then you will all be in the same boat as me and my mother who was not allowed MS treatment because it was too expensive for the over 5o’s.
I am 39 and a full time carer for my father which is becoming an untenable situation. I also have a twelve year old daughter and pray she does not get this too. Your story shows a hereditary link.
I feel that because there are so few of us around the World, the money needed for research will never be forthcoming and that means we are all left in limbo and in terrible pain.
It is a solitary illness because when its really bad and you are doubled up , nothing anyone does can help so you tend to retreat into your own space to deal with it…like a wounded animal.
I wish you and all sufferers as much pain free time as possible…..above everything, the pain gives us wrinkles!!
Annie