To pee or not to pee?

This morning I went for yet another scan; this time a CT Scan of my kidneys and urinary tract.

I have been complaining to my doctors about the pain in my left kidney for several years now. The pain is severe - the worst pain I have ever experienced. The pain is usually in my back but sometimes it wraps all the way around to the front, ending up in my lower abdomen. Occasionally the pain will reflect over onto the right kidney. Mostly it is a throbbing background pain, other times it is a sharp stabbing pain that comes and goes in waves. At its worst, the pain will make me scream like a Banshee whilst thrashing about and vomiting.

In addition to the kidney pain I suffer from frequent cystitis-like symptoms (burning pee), proteinuria (protein in my urine), hematuria (blood in my urine) and nocturia (a frequent need to pee during the night). To my mind these symptoms suggest that the whole of my urinary tract is affected.

My kidney pain first began on the 23rd December 2012. I remember this date because I almost spent Christmas day in Edinburgh Royal Infirmary with suspected kidney stones. In the end a scan showed no evidence of kidney stones and I was discharged on Christmas Eve. Since 2012, this same pain has resulted in my being referred to A&E on more occasions than I care to remember. I was hospitalised again in 2014, spending a week on the gynae ward in Barnsley (again a suspected kidney stone or ovarian cyst), but discharged after a scan revealed no obvious cause for the pain.

My doctors have performed numerous scans and tests between 2012 and 2019 but none of these have revealed the cause of the pain or my urinary tract issues. The only clue that I have is that two ultrasound scans (taken in 2016 and 2019) both noted a mass within the lower pole of my left kidney. Since this is where the kidney pain is, it makes sense to assume that this mass is responsible. In 2016 this mass measured 6mm in diameter and was assumed to be a kidney stone. Unfortunately, a subsequent CT Scan of my kidney did not reveal any stones and I was once again discharged from the hospital. Similarly, an X-Ray of my kidney in 2019 did not reveal the presence of any radio-opaque material (i.e. kidney stones).

In my personal (and utterly amateur) opinion, my kidney pain and urinary tract issues are related to my lupus. The symptoms are closely associated with lupus activity (i.e. the more active my autoimmune disease is, the more kidney pain and urinary issues I have). My doctors, however, prefer a diagnosis of kidney stones and have continued to chase this diagnosis for 7 years. If my pain is caused by kidney stones, all I can say is that they must be very sneaky, invisible ones that hide at the first sign of an imaging machine.....

I am hoping that the CT scan carried out this morning will finally reveal what the problem with my kidneys/ urinary tract is. However, because my doctors continue to look for answers that support their kidney stone theory, I suspect that the answers I need will be a long time in coming.

I like the Charlie Chaplin quote that I chose to illustrate this post because it sums up my current dilemma quite nicely. I am certain that my doctors will not find any rainbows (answers) if they keep looking down at the ground.

I am going to wrap up this post with a quote from Albert Einstein, which is equally appropriate:

"Insanity is doing the same thing over and over again and expecting different results"- Albert Einstein.