I've noticed that some people on here have stated that they have blood in their urine. Some also have pain in their kidneys/back area. If you go through the battery of tests....IVP's, cystoscopies, blood tests, urine tests, etc. and everything comes back normal, have your nephrologist look into Loin Pain Hematuria Syndrome. It is rare, and it is mostly a diagnosis of exclusion. But you can be positivily diagnosed through a kidney biopsy. If anyone has any questions, I would be glad to try and help since I've been dealing with LPHS for the past 8 years. It is a very painful syndrome and I hopefully none of you have it. But if anyone on here does have it, I would love to talk with you. Thanks.

I Have Been Diagnosed With Lphs Through A Biopsy, For The Past Four Years I Have Been In And Out Of The Er At Many Different Hospitals And Have Even Been Labled A Pill Seeker At Some Of Them Finally I Went To A Community Hospital In Oregon City Oregon And Was Reffered To A Urologist Who Then Referred Me To A Nephrologist.i Told Him That I Have Had Blood In My Urine Every Time I Went To An Er And That It Came With Great Pain And Fatigue My Urine Is Always Cola Colored I Said So He Gave Me A Cystoscopy And Said That My Kidney Function Was Normal So Then He Told Me That He Needed To To A Biopsy And He Discovered That I Had Lphs.but The Problem Im Running Into Is That I Dont Have Insurance So He Really Wont Do Anything For Me He Wont Even Give Me Anything For The Pain And Worse Yet I Really Dont Know Anything About This Disease. Can You Give Me Some Info On It Anything Would Be Great.,or Do You Have Any Suggetstions On What I Should Do!


Thanks,

Bret, Byodaman1976@yahoo.com

My wife has LPHS and I would like to get in touch with you if you have the time. My name is Storm and you may contact me at swede.rm@yahoo.com

Hi wonka,

I would be very interested in talking with you about this syndrome. Please read my post titled newbie here---BUT EXTREMLY FAMILIAR WITH KIDNEY STONES. I do have pain ALL THE TIME, but I don't know if it is linked to all the surgeries (from scar tissue) or from the remaining stones. I do pee blood and pass blood clots on a regular basis, but again, is it from stones? I am not obstructed 99% of the time and the urologists tell me the pain is not from stones, and they frown on the idea that scar tissue hurts (maybe because the scar tissue is from them making a living off of me).

I'm currently in pain management and on powerful narcotics (they are about to implant a pain pump in me). This is the only thing that has saved my sanity. The narcs don't completely take away the pain, but I can live with this pain level (I average a 5-6 on the pain scale daily, but will shoot to a 10 on the scale on a regular basis). The ER docs have treated me like a junkie (most of them anyway) even though I do not get Rx's from them. They call my pain doc everytime I'm in the ER (which is fine by me) because they usually get an ear full from him stating to TREAT ME...I'm not looking for narcotics! I would be very interested in hearing more about this syndrome. Please tell me all you can.

Thanks and Take Care :angel: