Hi I am a 26yr male and I have LPHS for the past 6 years I have had kidney stones since age 14 and I’ve had about every surgery that a person can go thru for stones. I currently moved back to Omaha NE and I can’t get any help here even if my doc in Aurora CO calls and talks with them. The urologist told me that he can’t help me and to go back to CO which I wish that I could as I had a great doc, she was the one who diagnosed me with lphs as I pee blood on a regular basis and I ha’ve so much unbearable pain I was taking oxycodone 120mg a day, lyrica 450mg daily and I would have a ketamine injections as needed as it resets your pain receptors and helps so I dont have to take as many pain pills and it really works.
So before I left co due to not being employed I had no place to live I’m trying to get SSdI I have a lawyer so I hope that I can get it this time around since I have been diagnosed with lphs I really need it and now. As I cannot work due to chronic pain and I’m not a reliable person as I’m always at the hospital or seeing some doc … Like gp, urologist, pain specialist, nephrologist and they tell me – “I’m sorry, I can’t help you, I don’t know how to treat you”!!! I have been on about every pain med known to man … The docs try and put me on methadone, but it makes me super sick and kills my stomach. I’ve tried suboxone as well and same thing.
I am so sick of getting the run around, I am close to selling everything I own, which isn’t much anymore and move to Germany as they are #1 in the world for health care. I just feel like dying, I can’t take this damn pain anymore I’m just plain tired sick in tired of being sick and tired and no one understands, not my family or friends.
I just want to be pain free once again, I want to be able to work again and live a normal life, but we all know that won’t happen. No cure for lphs. They say, sometimes it will just go away, but I can’t see that happening as I’ve had it for the past 6years. I’m tired of docs looking at me like I just want pain meds when I just want a doc to help me, like I had in Colorado. Yea, I could move back there but I’d have no place to go and I don’t want to have to sleep in my car again as that’s no way of life, but neither is having lphs. And me being so young I am scared that it’s just going to get worse as I get older.
I keep getting infections like mrsa and vre. I currently have mrsa again. I’ve been on bactrum for so long that it doesn’t work for what I have now.
I am really considering suicide as I can’t take this anymore, all I am is a burden to my family. My mom tells me that I suck the life out of her and I just feel worthless even more. I’m tired of chronic pain, I’m tired of my left side and left testicle hurting all thee time. It just isn’t fair for people like us and very unfortunate and our government controls it all and it’s bs. LPHS needs to be on the list for ssdi. Thank you for reading my story I sure hope it can help some one.