November 26: Seen by urologist #2, who categorically stated that what urologist #1 dd was “impossible”, that the anomaly is the One True Urethra – the same one seen in 1995 and the same one urologist #1 deemed “impossible” – and who wondered why I had not had CTAP w/wo and VCUG done. Turns out the procedure September 10 was a VUG (video urethrogram) and not a VCUG (voiding cystourethrogram), and that a formal VCUG would be a different thing that required being done in Radiology with “better equipment”. #2 tried to gaslight me into believing that what #1 had done had not been done since the passage had completely involuted by that point. Also threatened to inform my Gyn/Onc that there was only and had only ever been one passage, it was the same one imaged Sept 10, and just shut up and accept it – something that could not be safely done if we were to do a total hysterectomy, which would require creation of a vaginal cuff, which would require knowing the location of the anomaly.
So I wrote an actual letter and mailed it to the Gyn/Onc and my primary, explaining the problem and outlining three possible endings. Bad End entailed doing a total, mistaking the anomaly for a ligament or something and severing it with no actual urethral passage remaining, and becoming a permanent urologic patient, as the One True Urethra of #1 would have to have a permanent catheter placed in it. Normal End, which I designated as most likely, involved identifying and marking the anomaly so it did not get severed, but the original problem remained. Happy End, which I designated as least likely, involved getting at least one urologist to believe the problem existed, and having said believer agree to surgically correct the anomalous connection from the inside, vacating the need for the anomaly to further exist and redirecting normal urinary flow down the original One True Urethra of #1’s fantasy world.
This prompted the Gyn/Onc to schedule an immediate office visit for January 15, the day after my office visit with my primary. He said we could obviate the need for a vaginal cuff by doing a supracervical hysterectomy instead of a total, and that we had already delayed far too long (which I wholeheartedly agreed). So we did the supracervical laparoscopic robotic-assisted hysterectomy on February 6, which means that at this posting I am five weeks postop. It was “big and ugly”, as he put it, with the primary specimen weighing 495 g with another hunk of uterine neck as the secondary specimen. The endometrium showed signs of progesterone change, which makes sense since I had been on high dose progesterone for nearly two years at that point to inhibit further bleeding. Oozing had still been a problem anyway. LOTS of fibroids were found, which surprised me exactly zero.
Then came February 23. Urologist #2 had asked in November why the CT and VCUG had not been done, and I responded that if he didn’t order it, who exactly did he expect to? So he had, with an office followup for March 4… the VCUG was totally weird since they expected someone to be able to void while flat on her back. It was… problematic. The bigger issue arose at CT. Noncontast? Easy. Contrast? Not so much. On first attempt part of the saline and all of the contrast extravasated in my right arm. The tech said normally someone would be screaming. I in the moment attributed my lack of response to my already high pain baseline, but on further consideration later realized the issue was more that because of the original pathology – the tissue leaking I kept trying so hard to get people to understand actually exists – there simply wasn’t much holding the tissue together in the first place, so not so much pain when layers were forcibly sheared apart. Second time was the charm, however, with a smaller bore catheter and slower push rate in the left arm.
The real problem was the CT results. I have an 8.5 x 7.7 mm mass on the lower pole of my left kidney. This earned me a referral to Uro/Onc at the March 4 visit. So I’ve graduated from Uro to Uro/Onc the same way I graduated from Gyn to Gyn/Onc… not honors I wished on myself, obviously. The radiologist who read the CTAP recommended a PET/CT but the Uro/Onc canceled it and requested a CT chest w/o for completion. The CT chest was done March 12 and was pretty unremarkable. So unless the Uro/Onc requests something else between now and April 6 – the Uro/Onc initial visit on the day after Easter – I actually have a couple weeks without doctor appointments or labs or studies. I am not holding my breath that I might actually get that much kindness of a break though. April 6 for Uro/Onc, April 8 for primary f/u.
When I have mental energy again, I’m thinking of starting to document why I’m the villain in my own story. Probably repeats of early posts, but hey, gotta lance those boils of the psyche somehow.