Newly diagnosed with LPHS
Hi everyone,
My diagnosis of LPHS was just confirmed today. It has been an agonizing year as my symptoms began in January of 2010. I am 29 years old and I have been through many doctors and many trips to the ER for my terrible right flank pain and nausea/vomiting. After having a thorough work-up, doctors began telling me they thought that the pain was psychological. I even had an ER doctor look at the number of times I had come in and he basically called me a drug addict and that he wasn’t going to treat me. He suggested that when my body is needing a “fix” for drugs, to just go for a walk. What a laugh, I would love to go for a walk if I could! The pain is so debilitating that the simplest of things cause me agony. My primary care physician finally referred me to the Mayo Clinic in Rochester, MN. I cannot say enough wonderful things about Mayo Clinic! Everyone was kind and did everything they could to help me. I had a complete work-up and I also asked to see a Nephrologist (I had not seen one previously and thought it would be a good idea since the pain is right over the kidney and also because of the constant presence of microscopic blood in my urine.) My doctor was Dr. Marie Hogan and she ordered a renal biopsy, which confirmed the disease. Because of Dr. Hogan, I now have a diagnosis that I can take to my primary care doctor to start pain management. I feel so relieved to finally be able to prove to all of these people that I’m not crazy. I was so happy to find this forum with posts from others like me who understand what I’m going through!
Tags: help, Loin pain hematuria syndrome
5 thoughts on “Newly diagnosed with LPHS”
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It sucks you have LPHS too, but the dianosis comes as such a relief doesn’t it?
I think most of us have been told its in our heads.
If you ever need to talk you should add me on facebook / email me.
I’m 20 & have had LPHS for 6 years now.
Love Erin
I typed “Neurologist”, but I meant “Nephrologist”! Ah well…
Dear Ali, I am sorry to hear that you too have lphs. I have had i for 10 years. One good thing is that 10 years ago there was less info around re lphs & it took 5 years for many of us to get a diagnosis. We all go through the same thing; being told it’s in our heads; seeing psychiatrists; being accused of drug seeking etc. It was a real lesson in staying true to myself & knowing that I knew it was my kidney from the very first moment of pain.
You can see my story on http://www.kidney.org under perceptions. It’s called ‘Living with severe renal pain’. You can also find it by google searching my name. I hope you have found the 5 FB pages for people with lphs & their supporters. Let me know if i can help at all.
I would recommend that you find a good pain team as well as nephrologist & urologist. Also a lying & standing IVU can pick up hypermobile kidneys which mimic the symptoms of lphs.
Hi,ive set up a web site that you might find useful,everything you need to know about lphs and also has links to suport groups.check it out,you may find it helpful. http://Www.livingwithlphscouk.fatcow.com
Ali,
I have an appointment in Rochester MN next week.
Last time I was there Dr. Gregoire, the nephrologist
said that it us unlikely because I dont have gross
Hematuria. May I ask if you had pain and blood in the urine
or just pain ?