It started out when i was 16 and i got a really bad kidney infection so i went to the hospital and it was treated and everything but ever since that one kidney infection i started having blood in my urine and on top of the blood always getting infections no one could ever find out why this was happening to me which lead to many specialist appointments and finally to a nefrologist who diagnosed me i couldn’t control my pain by any medication so they would hospitalize me and push lots of fluids through to flush the kidney out and also they would give me pain meds through the ivy that went on for along time and then i finally got referred to a pain specialist who actually has helped me a lot for the longest time i was taking Demerol 100mg every 3hrs but my body didn’t react well and it gave me seizures i currently take oxycodone 15mg it seems to be sorta working i guess i just want to know if anyone knows of a different medicine i could try or a different kinda therapy that would keep me out of the hospital i don’t know if anyone will reply to this but i hope someone does who had this condition that could maybe give me some hope that this will get better because it really has taken a tole on me I’ve lost my friends its hard for me to go to school and there always calling saying i miss too much but i can’t help it when it bleeds it hurts so much that i can’t go more than anything i would love to have my old life back but i know that’s not going to happen i know i just have to except it and try and move on its just getting to be hard when it affects me going to school and actually having a life so please someone could you just even share your experience with me and tell me how your getting thru it all like i feel whenever i get ahead in life and its going good and i have a good month as soon as i get an attack i feel like it puts me 10 steps behind of what i just accomplished i feel like this disease holds me back from everything i just want to know how to make it better even in the slightest way.
- Author name:
- Katia
- Publish date:
- October 30th, 2010
- Discussion:
- 3 Comments
- Categories:
- LPHS
Personal Story - Tags:
- Loin pain hematuria syndrome
- About Katia:
-
Man i so know what your going through!
I’v just turned 20, having LPHS is ruining my life.
I have had a treatment done which has relieved my pain slightly. If any of you would like the info on it you can email me at erinrose @ windowslive.com or add me on facebook.
Sounds sad, but its nice to know other people understand what I’m going through.
Love Erin
My name is Stephanie, I am 24 years old and I have been having kidney problems the past almost 5 months. I just saw the Nephrologist and they said I have LPHS, I’m also being tested for IgA and another disease that starts with an M or something. Would love to hear back from anyone. I’m from Ohio and I really am new to this. Thank you.
I relate to your story SO much! I am 18 as well and suffering with LPHS. I feel like I’m looking into the mirror with you story! You are NOT alone! Send me an email! I’d love to talk to you and discuss that therapies I’ve been having.
Take care.
-Erica