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I am 16 years old, and for the last 12-14 months I have been presenting with really bad haematuria, abdominal pains and also loin pains. I have been admitted to hospital around 14 times and no one can seem to diagnose my problem. I have had extensive urological input and I've had a flexible cystoscopy, blood tests, X-rays, CT scans, MRI scans, and physical examinations but all have came back normal. I now have a named nephrologist through the NHS but she can't explain either what is going on in my body. The haematuria is getting a lot worse, with clots in it too. And the pain is beginning to get unbearable. I can't sleep. My appetite is sluggish. I drink around 9 litres of fluids daily but I have excessive thirst. I'm struggling to keep up with my school work due to the fact I can't sleep and the pain I'm in all the time really doesn't help. My gp refuses to prescribe me anything stronger than paracetamol and the kidney specialist won't give me anything either. Having these chronic pain issues landed me an appointment with the chronic pain team Via the NHS and the anaesthetist there told me he didn't want to give me anything stronger than paracetamol incase the nephrologist wasn't happy with it. I'm at my wits end now and really need some closure. Answers, and most importantly treatment and a diagnosis!!!! Has anyone been through the same thing or is anyone going through. The same thing or even able to help me out at all!?! Please? I've had a nuclear medicine scan to check for scaring on my kidneys and that came back as normal and it's definitely not a kidney stone. One doctor questioned if my problems were pshchological but the gross haematuria doesn't fit with his brief diagnosis. Paracetamol really isn't working now, all I want to do is sleep but I literally can't! Help me!!!!
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I'm really sorry to hear what you're going through and although I can't offer any help, all I can really say is you're not alone. I'm 21 years old and seem to have similar symptoms to you, with no indication yet of what it could be. Mine have been ongoing for the past 3 years now and still no closer to knowing what's going on. Has anything changed for you?
I'm getting to the point of desperation now, and yours is the only post I have found that seems even remotely similar to what I'm experiencing. Can I ask what you mean by loin pains? As the most severe pains I get are in what feels like my uterus (though it's difficult to pin-point) and in my right kidney. I've had all the same tests as you except CT and still nothing. I went to a&e last night as the pains are getting worse, but sent away as there's nothing they can do. I also had a gynacologist literally laugh at me and tell me it's all in my head.
I'm just wondering if you've come any closer to a diagnosis in the past 4 months? I'm absolutely desperate now, and the pain is so bad I've literally been curled up in a ball shaking and screaming this morning but no one will help me. I really hope things get sorted for both of us x
When I say loins, I mean lower back. Have you mentioned loin pain haematuria syndrome to your doctor? Also push to see a nephrologist, because they know what they're talking about! Try to avoid any non- steroidal drugs and this can cause more problems; drugs like- ibuprofen, diclofenac, naproxen etc. I hope you get some answers soon, nothing worse than what your going through. It will get better!
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