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Can anyone help me??

Posted , 5 users are following.

lian56771
lian56771

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!!!!

0 likes, 8 replies

8 Replies

  • ellie142
    ellie142 lian56771

    Posted

    Hi lian56771

    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

    • lian56771
      lian56771 ellie142

      Posted

      Hi,

      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! 

  • sam1881
    sam1881 lian56771

    Posted

    I had the same issues i could find what was wrong with me for many months i had bllod tests, scans and all monour of other scans. But i didnt find out what was wrong with me until i got ill and the dicided to do a biopsy so if i was you i would ask about a biopys on your kidneys because i didnt know i had kidney disease until i had one.
  • simian72428
    simian72428 lian56771

    Posted

    I've heard that taking Co enzyme 10 supplements with omega 3 can slow down kidney disease. There is also research on the positive effects of curcumin in protecting kidneys. Please check with your doctor before taking them. However, they are natural supplements available over the counter in pharmacists and supermarkets.
    • sam1881
      sam1881 simian72428

      Posted

      I have kidney disease and was going to take vitimans but the conslutants say their no point becuause theres no evadance at all that it works it was only a tale from the US. Best thing iiwould recomend is asking about blood pressure tablets as it carms the inflamation and also blood pressure makes your kidneys work harder and damages the the blood vessles in the kidney.
    • simian72428
      simian72428 sam1881

      Posted

      Coenzyme 10, omega 3 and curcumin are not vitamins. There is a lot of scientific evidence for these positive effects of these supplements. Doctors don't jump on new discoveries straight away - however if you mention these supplements they should know about the research
  • lian56771
    lian56771

    Posted

    Hi. I totally forgot to update this! I have finally some answers. I have been diagnosed with a rare kidney disease called Loin Pain Haematuria Symdrome(LPHS). This is a condition in which blood and protein passes through your kidneys- with no exact reason, causing pain and haematuria. The condition is untreatable, apart from strong painkillers- which  my gp won't give me, but apart from that everything seems to be settling down a tad. Thank you all for your reply's though! 
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