8 months 3 weeks ago - 8 months 3 weeks ago#56487by Alan
Welcome. Sounds like the pain is unmanageable. Those doctors are being paid by you so I would certainly call asking for relief. All I have is uneducated guesses that there could be some latent damage or tissue that is rebelling from your TURB. Or, as you mentioned something spicy etc eating can also flare things up. BCG is normally not given for low grade tumors as it is less responsive and used on low grade should there be one or more recurrences. Keep posting as you go as every one reading learns from everyone else plus there may be others with better insight.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I had a 2.5 cm low grade Ta tumor resected in early August 2018. I'm now over four months post surgery and continue to have persistent pelvic pain. The tumor was in the Trigone area of my bladder and I did receive MMC immediately after the resection. My first cysto in November was clear, except for one area near my previous resection that the urologist described as unresolved scar tissue possibly from the resection or a possible inflammatory response to MMC. I did not do BCG after talking with multiple urologists about not using BCG for a focal low grade Ta tumor. I do know I am holding on to urine with my last PVR at 200 cc.
Bottom line, my urologist put me on Oxybutynin because he thinks my pelvic pain is overactive bladder/spasm. While the medication seems to have helped, I have good days and bad days with my pelvic pain. Today is one of those bad days where I am cramping really badly in my pelvic region. This could have been exacerbated by a big holiday meal last night with family and overindulging with wine.
My next follow-up Cysto is in early January, but with this much discomfort, I am worried about waiting until then to go back for my follow-up Cysto.
Has anyone experienced a similar story 4 - 5 months post-TURBT? Any advice is much appreciated. Thanks!