Since May 2018 I have had a stent in my right ureter. Not to be confused with urethra. (Quick biology lesson: ureters run from kidney to bladder. Phew, it really was quick!) My pelvic tumour was pressing on it, causing my right kidney to become every so slightly enlarged because it was having to work ever so slightly harder than it was to pump urine down to the bladder. (Hence why kidney pain can be a symptom of advanced cervical cancer)
These stents are temporary and need changing every 4-6 months. My first one barely made itself known until just before it was due to be whipped out and replaced, when it decided to mimick a urine infection (yes they can do that) and then leave me in abject pain. Once it was changed in the November of 2018 it improved slightly, but it worsened over time and I presented in A&E with concerns about the stent four times,
Three of those times I was told to take buscopan (I already was, four times a day) and go home. The final time I was referred to A&E by a GP who referred me to Urology. I was finally seen by a urologsit who prescribed me Tamulosin, an off licence drug primarily used for men who have problems with their prostate. I was told it would take two weeks to work,
Before I had been taking the tamulosin for two weeks I ended up back in the hospice thanks to the pain I was in for pain control. It was that stint in the hospice that finally nudged my consultant urologist into having a look at my file. He brought forward the procedure to change my stent with the idea that tests would be run to see if we could remove the stent.
My dates came through, and my initial date ended up cancelled thanks to some chest pain throwing up a diagnosis of pneumonia (who knew? We certainly didn’t), but thankfully it was only delayed a week.
My wonderful parents took me into the hospital for 7:30am only for the urology registrar performing my procedure to tell me that he had no plans to remove my stent. He left it up to me, but did make sure to tell me that I was risking life threatening infection, effectively removing the choice for me. I asked him if the stent would be a life long thing and he told me for many it was, I was devastated, this was, I believed, the source of so much pain and to think I would be stuck in it was devastating. I cried. The procedure was done and I went home.
After the general anaesthetic I slept most of that afternoon right into the next morning, when I awoke in agony. I was screaming in pain, crying with it and my husband was advised by our palliative care team to take me back into A&E.
We got there and were seen by a urologist very quickly, she heard my entire tale (bless her) and said “Well, it seems to me, we have one option, remove the stent and see what happens.” Her plan to admit me meant I would be safe if indeed it didn’t go our way and a stent would just be popped back in if needed.
The stent was removed and the pain went along with it. Almost instantly. We had proven the source of the pain – now we just had to hope that the other urologist wasn’t right about the infection and stuff.
So far he (I’m sure gladly) has been proven wrong, though he only advised me what he thought was right at the time. Fortunately my kidney appears to be coping quite nicely without the stent there to help it.
I am so glad not to be in pain anymore. It is a bit odd, I still find myself expecting it or moving carefully as to avoid it. I feel the most normal I have felt in a long time. Long may that last! Hopefully I can stay stent free now.