LPHS

My name is Joy and at 39 my life is far from a joy. Amoung a multitude of other health issues, about three years ago I began to have blood in my urine and a nagging constant pain in my right loin region. I was sent to many specialist and endured many tests to no avail. Having a history of major depression and bipolar many of the doctors seemed to allow themselves to write it all off as an extension those somehow. I was tired of being in pain, I was scared everytime I went to the bathroom and saw the blood and wondered why with such an objective symptom the doctors could possibly be blowing me off as “mental”.

Finally, last year I was diagnosed with Lion Pain Hematuria Syndrome and although I was relieved to have a name for my problem I am still very frustrated. My pain is constant and sometimes nearly unbearable. My quality of life has gone way downhill. I have two children and a home to care for and have found myself increasingly unable to do so. I am on large doses of narcotics for the pain but I tend to grow a tolerence for anything they give me and it stops working. In another week I will be going to pain management. My Nephrologist has told me several options pain management might give me one of them being a nerve block. If there is someone out there who has had a nerve block I would be interested in knowing if it helped. Also anyone who has had success with any treatment for LPHS and might like to share with someone who is desperate for relief and maybe more options for treatment I would appreciate any feedback.

Thank you for any help or advice anyone may have,
Joy

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