Life with LPHS

The pain started November of 2008 and I can remember the day like it was yesterday. I was at work on a break and immediately dropped to my knees in pain and thought my appendix has burst. I left work and went straight to my doctor.

The doctor did not know what was wrong and had ruled out my appendix as a cause. He thought maybe I had a cyst burst on my ovary game me a shot of pain meds and I was sent on my way. Well the pain continued on and I was referred to a urologist because an X-ray showed kidney stones in my right kidney. So off I went to the urologist to hope for some relief. The urologist was not sure how I was in so much pain since the stones were just sitting in my kidney.

At this time I had already had plans to move to NC and was scared of what to do. I was prescribed pain meds and sent on my way. Once in NC I met with a new urologist and he decided to do Lithotripsy, July, 2009 and break up the stones and see if that brings relief. Well to make my very long story short, it did not and then the following year I had more stones and attempted Lithotripsy once again. The 2nd Lithotripsy made the pain worse and it last non-stop.

After, being bounced from ortho to chiropractic to acupuncture….I took control and demanded to be sent to a Nephrologist. At the appointment, the Dr. walked in and told me he knows exactly what is going on and continued to explain Loin Pain Hematuria Syndrome and how all my history and test confirmed I have it.

I felt a weight lift off of me to know I finally have an answer and I am not crazy. However, he explained he felt horrible, but based on lack of studies there was nothing at this time he could do for me other than, send me to a Pain Clinic for pain management.

I was sad to be stuck with this and not have a cure yet happy hear the words pain relief. So off I go to yet another doctor very hopeful to find relief and get back to being NORMAL. The appointment lasted a whole 5 min. and the Nurse told me they could not treat me because they did not know how to and the fact there was no cure. I burst into tears and told her the pain was killing me.

At this point I didn’t even know what happy was anymore. I felt like cutting my own kidney out just to try and make it stop. When I left the clinic I called my nephrologist in tears and told him what had happened. He was very upset and said they should never refuse a chronic pain patient treatment. The next day I was woken to a call from him that he had sent my information to another pain management clinic and that he was so sorry for how I was treated.

This was in October, 2013 and I was not very hopeful anymore and was just like whatever. I have to say though I am so very thankful for the new pain clinic, they have been amazing and trying their best to find a way to manage this rare disease.

I am not 100% pain free but I have had a few pain free days for the first time in 6 years. It still is a struggle and I have my days I just want to lay in a ball and cry in pain but I must strive on and work.

I do agree this condition should be put for permanent disability until they find a cure because it is very hard to make it through the day in such horrid pain.

3 thoughts on “Life with LPHS”

  1. I am so sorry. I cry every time I read these posts. I have struggled since I was a teenager with mysterious flank pain, visible hematura, too many doctors, too many tests and simply put too much of not enough. When I turned 36 I’m heading to the doctor once and twice a week in a completely panicked state crying uncontrollably my pain was getting so bad and by this point it was no longer just the flank pain…. Eventually I was diagnosed with fibromyalgia which at first I thought this was good… It was just a nightmare … Good luck with that diagnosis by the time I was 38 I demanded to see a nephrologist to my luck he had just attended a seminar on LPHS he did the biopsy to confirm… He was sad to give me the diagnosis I was told exactly as you were … Word for word…. I won’t get into the struggles of my meds, friends , spouse sometimes my heart hurts too much to talk about it.. It feels as bruised as the rest of my body… But to the point … It took me three years but I did get on SSDI… My GP and my Rheumatologist backed me the whole way… My diagnosis fibromyalgia and LPHS…. I am now 44 and been on disability for 6 yrs …I wish you the best

  2. My name is.Brittany I read your story and mine is exactyl like yours. I wad diagnosed with lphs. And cant get help. no paiN center will take me a patient. I live in nc. I saw that you moved there? Could you tellnme where you went?

  3. I am in the same boat. The pain is unbearable. I live in South Carolina, but am willing to travel anywhere. Is there any way you can share the provider that agreed to work with you and your LPHS?

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