new here! chronic left kidney (flank) pain

• Hi, I've been reading these posts for about a week now and am so glad to have found this site! I felt so alone (my hubby is the only one who knows I take narcotics: Norco 10/325 up to 6prn) Both my parents deceased, so no help there, and other family members know I have "something" wrong with kidney, but I don't dare tell anyone I take pain meds...I know the stigma. I also work in the medical field and I know how we are treated. I worked pain management for 5 years and was very sympathetic and worked closely with the Dr. to ease my patients pain, going to bat for them when they needed early refill or increase...I currently have a Urologist (going to for about 7 years) and a pain management Dr. I have been taking my Norco (same dose for 7 years) at last appt (after MRI showed 2.0 complex cyst in Medullary region) he said he will "redistribute my meds/same dose/just redistributed ie:long-acting) I am terrified to switch to something like that as I have seen/read first hand the w/drawals someone can have. I have 3 kids and work full time (at Obgyn) and we are very active...I don't want something to "make me groggy or out of it"...but I also know not to "question" the pain Dr. as he knows whats best. I'm wondering if I have LPHS? I brought it up to my urologist many years ago when I first heard about it and he said it's not a "Real diagnosis"....I always have gross/microscopic hematuria and constant dull ache (7-8 on pain scale) and occasional "spasms" (feels like when you pass a kidney stone!) and these episodes pass after several minutes to several hours...does this sound like LPHS? Is there a LPHS specialist in Colorado? Just glad to know I have somewhere to go now when things get too much (my hubby is supportive, but doesn't understand "pain"...) I'll write more later (I'm at work...they know about "kidney problems" but obviously don't know what meds I take or to the extent...not really anyone's business except mine/dr's...hope you all have a good night!

Hi and Welcome.

Somehow I just wrote a long reply and it did not make it to this post!! That is sooo aggravatiing!!

Anyway, I am a LPHS patient of many years and just wanted to let you know that there are a few that do post here, however, I have not seen anyone post regarding this terrible disease for awhile. Just to let you know your symptoms do sound very familiar and the best advise that I can share with you is to find a really good Nephorologist in your area that knows and believes in the diagnosis of LPHS. Unfortunatly, sometimes the diagnosis is more of a "rule out" type of thing and the ability to get a kidney biopsy is usually vital.

I have been fortunate to have the best Dr's that treat and continue to reseach LPHS working with me. I have been through about every treatment and procedure that has ever been tried.. I do agree with you that the least amount of people that know the drugs that you have the better! Unfortunatly, I have found the best relief is with a continuous drug treatment such as the Fentynal patch with breakthroug meds to help also.

I hope that our posting will bring out other LPHS patients on this forum and you can get some other advise, there are many helpful and caring people here that can make a difference and truely understand.

If there is anything else that I can answer for you or any questions that you might have let me know. I hope that you will be spared this diagnosis, however, if you need advise or a shoulder we will be here to listen!!

Hugs,

Cyndi