Diagnosed with angiomyolipoma feeling unwell

Posted , 5 users are following.

hi I have recently been diagnosed with an angiomyolipoma. Haven't yet seen a nephrologist. I am wondering about others experience of this. Anyone felt unwell with it?? It says online it is usually unsymptomatic but I have been feeling a bit unwell. I do have auto immune disease but that is usually well controlled at the moment. So not sure if the unwell feeling is due to the angiomyolipoma or other issues. Any feedback appreciated. 

0 likes, 21 replies

21 Replies

  • Posted

    I would be interested to hear from anyone posting on here just what their doctors do tell them once they are diagnosed with angiomyolipoma(s).  What information are patients given ?
  • Posted

    I don't have any symptoms other than microhaematuria. The tumour was found on a Ct scan looking for Kidney stones. The consultant did not think the microhaematuria was caused by the tumour. Does anyone else have microhaematuria?

    • Posted

      I'm not sure if your still active on this forum but I do hope so! did you ever find out what was causing the microhematuria? I have it aswel and also have a angiomyolipoma but mines only 8mm so I don't think its large enough to cause bleeding. I've been having blood in urine for atleast nearly 2 years now so finally I'm being investigated for it

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