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

‹ LPHS and Acupuncture Newly diagnosis ›
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Comments

1

twehe:

Joy,
LPHS has no real treatment. What may be good for one person is not so good for the next.
I have suffered for probably more than 10 years but was diagnosed around 5 years ago. I did not have anything available to me but Vicodin or Percocet for the first 2 years.I was at the point were doctors told me it was in my head. You know when you are peeing blood there is something wrong!
I have had several nerve blocks done and not one worked.They caused me great pain in the flank due to tenderness. my Nephrologist is a top nephrologist in the US. He is not very keen on Spinal Cord Stimulators and does not recommend Autotransplants for LPHS. When you have such a great pain those nerve blocks do not work. You are better off saving your money.

I have a pain pump that has been a saving grace for me. my quality of life has improved for me and my family. I also have Lupus to deal with. The pump has not worked on the Lupus but has seemed to help with LPHS. If you would like more information please email me. I do not want to take up alot of space. I tend write alot.
twehe@wideopenwest.com
Tara

19 Dec 2006 - 3:03am
2

Helene:

Hi

Just wanted to let you know that I am looking into acupuncture as a method of dealing with the pain and hematuria. I will let you all know if anything good comes of it. If anyone else has ever tried this treatment or has any other treatment which has helped, please let me know. Thank you.

Always looking forward to hearing from you,

Helene

6 Mar 2007 - 2:32am
3

enigmatu:

Tara,
just some extra info...I did the nerve blockers, acupuncture, etc but nothing worked! I am not guaranteeing this will work but if you want more info about the surgeries I had I would love to share with you!
Sarah L-Kansas City, MO

7 Apr 2007 - 3:11am

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