My name is Tania, I am 16 yrs old and my doctors believe I have LHPS

My name is Tania, I am 16 yrs old and my doctors believe I have LHPS (although they are still checking for other possible diseases). I live in a private athletic boarding school miles away from my family and am finding it extremely difficult to get through this health issue by myself. Although I know my parents don’t know what I’m going through neither does anyone at my school, my friends, my roommate, or any of the staff members. I feel very lonely and alone at school. The pain is so unbearable and I am always scared for it to return. I’m tired of being curled up on my bed in pain or on the bathroom floor throwing up. I have been to the hospital many times and sometimes the reason for my pain is very obvious (kidney stones) but other times there seems to be no reason for all the pain, and this is when I start thinking I’m crazy or that it is all in my head.

I don’t want to let people know what is going on, although it is hard to hide it. I feel bad for them when they see me sick or and pain and are unable to do anything, they are unsure what to do to help (there is nothing they can do). I have let this disease run my life, not because I want it too but the pain limits what I can and cannot do. And I don’t want to involve my friends because then I’m dragging them into a problem that’s not theirs and a burden that they should not be carrying. But at the same time I wish there was someone there to hold me when I shake and cry in pain.

ABSOLUTELY NO ONE UNDERSTANDS THIS. My friends don’t understand, they’re telling me to be more positive but it’s so hard to be positive when you’re in so much pain and have gone through so much. If they want to try my life and see if they can be positive at all then they can switch lives with me. I try very hard to be positive all the time about my health situation but sometimes its too overwhelming and I break down and cry. I just wish there was someone who understands. Can you help me?

11 thoughts on “My name is Tania, I am 16 yrs old and my doctors believe I have LHPS”

  1. Hi, my son was diagnosed with LPHS this year. I feel bad for him because every time he would play soccer he would start having episodes and then after a couple of days it would end, so he had to stop soccer. Later he tried swimming…nope, had to stop that too. He even went to bible camp and when he came home he told me he had blood in his urine again and back pain. So, after countless dr’s appointments and a trip to UCLA…we still didnt have an answer. Well after the report came back from UCLA my son’s PCP dr, sent a refferal to a nephrologist…BINGO! The “neph” was a bit awed since LPHS is more known in women, but there are some males who have this. Unfortunately, my son is no longer able to be active in anything he enjoys, but since this is something new, we are able to control it by, no physical anything and mild pain meds. So far so good. I thank all of you for sharing your story and I pray that things will stay stable for all of you.

    1. Michelle, not try g to scare you but it does get at worse. Enjoy your son encourage him in everyday. My son is now just 18. He has been living with this since he was only 6 yrs old. He only has Hyrdonephrosis. Caused from. Something they have NO freaking Idea!!! I am worried and upset with this . My son Joshua is a 4.0 student always has been. Loved football, baseball, track, didn’t really care for basketball but tried it because he loved sports. He had to stop everything he was even a male cheerleader so he could get scholarships for collage but lost that do to the fact he had so much trouble in January of this year 2015. He was in the hospital for pain control for 6 days unable to even walk. Please feel free to. Contact me.
      I have done at of research these past few weeks.

  2. Hi Tania, my name is Hope. Im 18 years old and I know all too well as to how you are feeling. And all I can say is Im terribly sorry. I too was diagnosed with what my doctors believe to be LPHS. I have been dealing with it for a short time it would seem, 9 months. But these last 9 months have been the hardest days of my life. Being in pain that nobody understands, that takes over you’re every thought and action. I’ve never felt so miserable in my life. And making people understand that is nearly impossible. Makes you start to feel crazy having to be in pain all day every day with no help of any sort. I have yet to find a medication to help with my pain, just smoking pot to take my mind off of the pain is the best thing I’ve come up with to help ease the pain. Its hard dealing with something so severe and not having a soul to relate to you. But if you need someone to talk to that can relate feel free to email me at [email protected]

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