Please Welcome lu_76 with LPHS

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Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 9/7/2009 10:53 AM (GMT -6)   
Hi Lu! I copied your first post from the end of an old LPHS thread to a new one so more people would find you. LPHS is a rare and painful condition that is based around the liver. It literally means blood in the urine, which is a symptom, but the hallmark is intense pain in the loin area on one or the other side of the body. The causes of LPHS are not clear and it is very hard to diagnose..but the pain is intense. We have had a few members with this disorder on the forum but not many. One member had a kidney moved to a different location in the body with mixed results.The hopes are to strip the kidney of the nerves that are causing the pain. The only other treatments can be either total removal of the kidney which removes the nerves that are hurting or, more common, treat the pain and help improve the patient's quality of life. This is a very difficult disorder to live with.

With that said...please welcome Lu to the Chronic Pain forum!!

I was diagnosed with LPHS two years ago. Am really interested in talking to anyone about the pain relief that they are on. I have just come out of hospital as my pain became unmanageable.

I also suffer from kidney stones, but thankfully do not currently have one and have not had one for a year.

I look forward to hearing from anyone. I am a very positive person but the pain is really begining to get me down. mad

Lu xx
Play fair. Don't hit people. Say you're sorry when you hurt somebody.
~Robert Fulghum

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 9/7/2009 4:16 PM (GMT -6)   
Hi, Lu,
I just wanted to welcome you to the chronic pain forum, although I don't know much about LPHS. Hopefully, someone else will come along who does, but we do know about pain, so feel free to join us for support.

I am sorry for all you're struggling with. From Chutz's description, this is a tough disease. I hope you can find some answers.

Again, welcome.


Elite Member

Date Joined Jul 2009
Total Posts : 14364
   Posted 9/7/2009 8:25 PM (GMT -6)   
I don't have your condition but I can imagine the pain you go through. Hang around these are great cheerleaders.


Veteran Member

Date Joined Aug 2006
Total Posts : 9607
   Posted 9/8/2009 3:53 AM (GMT -6)   
I don't know much about LPHS, but from the way it sounds must be horrific at times and wanted to let you know
we do care and hope that you can get low pain days...
I also wanted to offer up lots of soft hugz
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines


Forum Moderator

Date Joined Feb 2003
Total Posts : 13366
   Posted 9/8/2009 4:03 AM (GMT -6)   
Hi Lu and welcome aboard to the crazy world of CP. We have had some others on here some time back with this awful disease. I do remember what they went through in trying to get a dx and it was heart breaking because little was known about it. I do not know if the medical community is any more hip to it now than they were a couple of years ago, for your sake I certainly hope do.

I do hope you will hang out with us and let us know how you are doing.
Moderator Chronic Pain
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.

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