Possible Nutcracker syndrome or granulomatosis with polyangiitis
Hi, I am a 20-year-old female who has been suffering from constant kidney pain for nearly 3 years now. The pain started in 2022 as achy pain in my left kidney area which felt like a sharp stabbing pain when touched. I went to my GP, and it was assumed to be a UTI after trying multiple antibiotics which had no effect and a urine test showing blood but no infection, I was then referred for an ultrasound of my bladder and kidneys. The ultrasound showed no abnormalities and so I was then referred to physio as it was assumed to just be a muscle issue in my back. When I went to the physio, he wouldn't even touch the area as he said, 'it's obviously something to do with your kidneys' and he didn't want to aggravate the issue. The pain seemed to settle and with school commitments I just had to get on with it and hoped it would go away. The constant dull ache seemed to calm down but when my left kidney (or eventually right too) was touched it was an immediate sharp stabbing pain with the dull ache coming back any time I was unwell (which was frequently). Then in October 2024 I got sick with what seemed to be a flu/covid type illness, and the dull pain was back and worse. I was in agony with it. Again, GP assumed UTI but then there showed no infection but there was microscopic blood in my urine. I then went privately to investigate further with blood tests which showed nothing of extreme note (low iron, low vitamin D, low folate). After this then I was left with a prescription for a strong dose of co-codamol and deciding do I get another ultrasound or an MRI. We decided an MRI was more beneficial, so I got this done privately too with the promise of a video call going through all the images (this was not given) so now I am left with no answers, still in a lot of pain. The pain now is in both kidneys, and it is awful, it hurts more sometimes when I move or when its extremely bad when I lie of my sides, pain killers rarely help at all. I have done my own research and come across nutcracker syndrome and granulomatosis with polyangiitis (GPA) these both seem like they fit my symptoms. Nutcracker syndrome explains my kidney symptoms, but GPA explains kidney pain as well as my constantly getting sick (always getting infections, flus, coughs, sinus infections all the time! I have also had constant postnasal drip for the past 3 years. In 2024 I had been on 12+ antibiotics). I was wondering if anyone knew how to read MRI scans as I have uploaded some of the still photos from mine and am hoping you are able to give me a bit of an idea if it looks like nutcracker or if that seems unlikely. It Is probably worthwhile to note also I was diagnosed with hypermobile Ehlers Danlos many years ago. The pain has been getting a lot worse when I am just sitting studying it will suddenly feel like I am being stabbed and the pain is so bad I could vomit. I am so fed up being in pain and being told it’s in my head and I missed lots of time in university last semester and want to get this sorted particularly before my exams in summer. Any advice or ideas are appreciated.
