Is it a general human trait that we can excuse symptoms as something else? Is it an auto denial response, or a fear of a symptom being something more sinister? Or maybe it is an alpha male issue. (But girls - even for alpha males - Man Flu is a thing!!!!!)
In June, of this particularly hot year, I was fed up of drinking lots of water to rehydrate. So just to take the edge off drinking just plain old water, I bought a bottle of blackcurrent cordial. By a completely bizarre coincidence, when I went to the toilet that evening, my urine passed in a purple colour which could only be described as similar to Ribena and, being a man, I wondered if it was the cordial that had discoloured my urine (yet knowing that this was unlikely and had never happened before!). Well, when the same this happened again the next morning I realised it was unlikely to be the Ribena berries. Subconsciously I probably knew as much and had brought a bottle with me to the toilet. So with sample in hand, I called the NHS and got an emergency appointment with my local GP. With the confirmation that it was indeed blood, my doctor initiated the various tests that started the journey to where I am 3 months later, with a confirmed diagnosis of UTUC. I do feel I should have had a confirmed diagnosis earlier (I had pretty deduced the outcome from the various tests myself much earlier), but that will be for another post.
So what are the symptoms of UTUC?
Well there will be information on more expert websites, but the symptoms are pretty universal:
For me, I had the first two symptoms and an overwhelming feeling of lethargy. Of course these symptoms can be related to lots of possible issues, which is what the doctors will advise when you present them, but it is important to get it checked out.
The pain in my lower back was more like a stiffness rather than a discomfort - I described it to my doctor as feeling like I had sat in a draft for an hour.
For someone who had only been to a doctor about five times in my life for illnesses, this was a rare visit, but it turned out to be an important one.
The lethargy and tiredness, it later transpired following a ureteroscopy, were caused by Hydronephrosis. Basically the lesion in the ureter had blocked the flow of liquids from the kidney to the bladder, and the subsequent back up of these waste fluids reached my kidney and led to my kidney becoming enlarged. While having the ureteroscopy, the surgeon put in a JJ stent (I have attached a link) and this alleviated the build up. I was instantly feeling much more energetic and sleeping better at night.
So even if you have these symptoms, which can be caused by a number of issues, UTUC is a rare outcome. It is also a difficult diagnosis and is often found while testing for other possible causes, which was also true for me. Typically 92% of upper tract cancers are in the bladder, 7% are in the kidney, but finding the 1% that occur in the ureter (the tube connecting the kidney to the bladder) can be almost accidental.
In my next post I will refer to the routine tests that followed the trip to the doctor, and the steps leading up to a diagnosis. If you have come to this blog, you may well be passed the symptoms stage, but it is a well touted cliche - go to the doc!! I mean, who the UTUC would think you could pee Ribena!!!!!
