I’m an optimistic person. Mostly. I am these days, anyway. I’ve been avoiding writing a granulation tissue update not only because I still don’t have a clear grasp of where I am, but also because this whole thing is currently tainted with the terror of regret. That’s not an easy thing to write, and even harder to admit. In the end, I knew the risks when I decided to have vaginoplasty. I willingly accepted the risks. Also, theoretically I will heal eventually. I assume. I hope. So (eventually) this will be moot.
Darkness creeps in
It’s a scary thing when darkness creeps in. Voices that say I should have opted for less invasive surgery and been satisfied with that. Gremlins who cackle, reminding me I deserve the pain and fear. I realize it’s all false, but it’s terrifying nonetheless. Regret gets me nowhere. Regret is a lie. And yet, in my worst moments these days I’m finding the need to constantly bat it away.
How do I judge the quality of my medical care?
I don’t know how to judge if the care I’m receiving is appropriate or substandard. Perhaps the seemingly endless wait-and-see approach is the same one any transgender care professional would take. Maybe there’s nothing they can do for me after a certain point due to the tension I hold in my pelvis. They could be doing everything possible and everything correctly. But after 15+ months I’m stuck in a loop. I’m now getting silver nitrate treatments regularly. The granulation tissue gets a little better, and then gets worse, then better, then worse. This is not something I can see with my own eyes and must trust the person who is treating me. The wheel spinning is making me crazy.
I’m ready to finish these surgeries. I want to return to some kind of normalcy. My next (last) surgery will address my urethra and finish with breast augmentation. I’m especially eager to get my urethra pointed correctly. But my surgeons won’t even discuss surgery dates until the granulation is 100% healed. The last thing I need is to risk infection because I have another surgery with this active complication. So, I wait. And wait. And ride this exasperating roller coaster.
I want off this ride please.
Advocating for myself
My next step is to search for second and third opinions outside of the Kaiser system. I want to confirm my Kaiser medical team is doing everything possible to get me through this. Everyone is insanely busy and I want to avoid falling through the cracks by remaining too quiet. Even getting in to see doctors outside of Kaiser is proving to be difficult. So this will likely remain a very long haul. And in the meantime, my challenge is trying to not give in to the darkness.
It’s hard to advocate for oneself when one doesn’t fully understand the problem or fix. It feels like a three-way Catch-22. Theoretically, my pelvic tension exacerbates the granulation tissue. I’m trying to calm the pelvic tension with some physical therapy, but I can’t delve too deeply with the physiotherapist because she can’t attempt all available solutions while I still have granulation tissue. At the same time, I’m dilating more often than most trans women at this point in the process. The frequency of dilation may also be making matters worse, but I’m told “the answer is to dilate more.”
The mind spins. Most of the time I don’t know what the hell to think. So how does one unpack that enough to advocate for oneself? What exactly should I be asking for?
For the time being, I’m following the guidance of the only doctors I have. Once I’m able to get outside opinions I may get some new perspective. The possibility also exists that I’ll find out my medical team is doing everything possible in my case. Either way, I need to find a way to endure this roller coaster for a while longer.