If I remember correctly, last time I posted I was about to begin a new medication… metformin. Its purpose is/was to reduce blood sugar in my vasculature – the very blood sugar my body was pushing out to try to attract fluid back into circulation. Well, the effects haven’t been pleasant. I have lost my ability to tolerate carbs nearly completely. Just the smell of anything sweet provokes severe nausea. Stuff I used to eat with relative impunity – toast, sandwiches, noodles, basic stuff – now gives me severe stomach upset or diarrhea. The most “carbs” I can handle are whatever sugar content resides in classic/regular Coca-Cola – I am told there is a lot of sugar, but the stuff does not taste sweet at all and helps settle my stomach, so I drink it regularly – and perhaps high other-to-carb ratio things like wraps, in moderation. I’ve always tended to be a meat-and-veggies kind of eater when left to my own devices, so it’s not that much of a “change”. Just now I can’t have potatoes if it comes from “real” potatoes. No fries. No bread. No toast with jelly. Or even toast to mop up egg yolks bursting on the plate. No noodles – that hurts a bit since I like things like ramen, soba, and udon. Kinda makes going to places like a Chinese buffet not viable since most of the stuff I would want to eat I can’t tolerate anymore. You get the picture.
Frankly, I don’t remember how much drama I’ve put here in the past and I’m not going to go back and read to figure it out. So I’ll try to summarize briefly. I have a congenital abnormality where my urinary outlet goes from bladder directly to the left side wall of my vagina. This meant, in practical terms, that from birth to age 17 – the fall of my senior year of high school – I had a wet bed every day. As in as soon as I was sufficiently unconscious, urine leaked out involuntarily. This was not a choice. This was not something I could “stop if I chose to”, as my parents vociferously demanded repeatedly. This was a biologic reality that was never assessed by a medical practitioner because my parents would not allow me to be left alone with one, ever, even a school nurse, lest I reveal the “family shameful secret”. Not that I could have brought myself to say anything in any case because I was so firmly conditioned. So I prayed desperately and asked the Lord to give me a dry bed, if He wanted me to become a functional adult. Yes, those were the words I used – “functional adult”. His way of solving the problem was to make it so I never entered a deep enough sleep for my bladder to overflow. This of course meant permanent sleep deprivation and no ability for regenerative healing that typically occurs during deep sleep.
Fast forward to age 25. I went to college, went to med school, had to leave med school because my health was failing, got a job, and finally had my own private employer insurance. I established medical care with an internist (who I love dearly and has been a stalwart for 30 years on my behalf now) and got seen by people I needed to see, including GYN, Pulmonary, and Urology. When I was assessed by Urology in 1995, I finally learned what my anatomic problem was: I had what he called a urethra that passed from the bladder to the left vaginal side wall. He demonstrated the catheter on live fluoro from my vagina to my bladder. He also demonstrated that where my urethra is “supposed to be” was only a blind sac with no functional connection to my bladder. One of the things they did was insert the kind of catheter with a balloon on the end to prevent backflow, and they gradually filled my bladder with fluid, partly to assess capacity, partly to assess sensory levels. Up and up the content went, with the pressure increasing until it was nearly too much to bear and they had pushed as much fluid as they could in – no more would enter. There was no leakage whatsoever, no passage whatsoever, from the “urethra”. Only from the “urethra” he said was exiting in my left side wall.
I’ve explained before the primary pathology of “I leak”. This has, over time, resulted in continual degeneration, massive menorrhagia, a single successful pregnancy, a complicated menopause, and now continual variable bleeding from an endometrium that just doesn’t know when to quit. I was referred from GYN to GYN/Onc, and he wants to do a hysterectomy. Problem is, we had to re-consult Urology after 30 years to establish the aberrant “urethra” and its location for surgical planning.
Enter stubborn recalcitrance. On June 10 – after the first attempt was aborted due to a potassium that just wouldn’t stay above 3 – we finally did a fluoro under anesthesia for anatomical mapping. Except she didn’t do it. She forced a passageway through the “normal” urethral “opening”, mapped out the ureters and kidneys and found them relatively normal, and concluded my only problem was some cysts in the bladder. She made zero attempt to locate or utilize the existing urinary outlet and insisted in her op note that everything was normal including the “urethra” she breached.
Well, I still pee through that vaginal outlet. I am willing to call it what it likely is, a vesicovaginal fistula, instead of the “urethra” title the urologist called it in 1995. But unless I can make her acknowledge the existence and location of said fistula, I am in danger of losing my ability to pee completely since the currently scheduled robotic total hystectomy with bilateral salpingo-oophorectomy (read: they’re taking it all out) will likely lead to a vaginal cuff with a closed fistula that will leave me no functional urinary outlet. The entire damn point of the fluoro was supposed to be to establish the position of the fistula/”urethra” so that surgical planning could be done to either preserve it or do something about the nonfunctional anatomically correct “urethra” to make it amenable to urine passage once the other is gone. She simply didn’t do it, and on the phone afterward insisted that my urethra was normal (it clearly is not). She refused to even acknowledge that the other passage exists.
The only functional solution to this, if the hysterectomy is to still go ahead on July 25, is to have her stick a balloon catheter up the vaginal pathway, inflate the balloon to prevent backflow, and then start filling the bladder up. If some actually exits through the new passageway she carved (I still can’t decide which verb I like best here – carved, bored, created, or something else), then we have some degree of hope that post procedure I will still be able to urinate. But if what I suspect happens, and filling the bladder results in no natural outflow from the “urethra” she insists is “normal”, then we have our answer. Preserve the fistula, or do something about the aberrant “urethra” that has never seen urine flow in my entire 55 years, no matter what she says.
So there is the dilemma as of Summer Solstice, or Litha, or Midsummer Night (yes, that’s where Shakespeare got it from), or whatever you want to call the night of June 20 going into June 21. If I can somehow make her test the theory, we may still be able to do the hysterectomy as planned. If not – I will have to find a urologist who will acknowledge reality before we can safely attempt closing off that fistula for good. You can’t pee through a closed vaginal cuff, after all.
I doubt anyone will ever see this, but if they do, all prayer is appreciated. God is able to soften hearts and open minds where facts and logic don’t work because of preexisting biases.