Funny how a congenital abnormality can totally wreck your life. Seriously.
So the story begins with being born. Cliche, right? But what the story doesn’t say is I didn’t know until college that I was weird, and I didn’t know until age 25 that I wasn’t just weird, I was a freaking diagnostic unicorn.
I spent the first 17 years of my life with nightly enuresis. Put plainly, I wet the bed. Daily. Every single night. Not because I was “doing it on purpose”, as my parents continually accused me of. What sane person would choose to do that? It happened any time I fell asleep long enough to fall into deep sleep. So the real culprit was the deep sleep: it meant that my bladder simply overflowed because the normal mechanisms to keep it from happening simply did not exist. Not that I knew that yet.
Then came the fall of my senior year of high school and the prayer that would change my life forever. I prayed the most desperate prayer of my life to that time or ever after. I prayed “if you want me to be a functional adult, You need to fix this.” Functional, as in not wetting the bed every night. Functional, as in being able to have my own place. Functionl, as in being able to go to college and stay in a dormitory. Functional, as in eventually holding a job, or being allowed to learn to drive, or whatever.
You see, this point is where I lose medical professionals. They simply do not want to believe, whether it’s that my physical anomaly exists (even though it was documented in 1995 by a “real doctor”) or that praying a desperate prayer would change a functional deficit. But the truth is the truth, and I’m not going to pretend it’s different.
So I lost my ability to deep sleep, and with it lost my ability to self-repair. You see, the state of deep sleep is where most of the body’s self-healing ability kicks in. If you can’t deep sleep, you can’t do the normal repair work the body depends on to keep going. Even people who are sleep deprived will usually fall first into a state of deep sleep, then eventually come out of it into lighter stages and REM sleep before waking. Me? No matter how sleep deprived I get, deep sleep simply doesn’t happen – because if it were to happen, my bladder would overflow and I’d wake up with a wet bed again.
The signs of degeneration were subtle at first. During college, I convinced my parents that a job was a necessary evil – they did NOT want me to have an income or any degree of sufficiency that did not depend solely on their grace – but I argued that college textbooks were expensive, and working was a way to prevent that expense from falling squarely on their shoulders. So I worked as a cashier at a little-D “department” store called Bradlee’s. Believe it or not, their headquarters is (was?) in a town called Braintree. No lie. Sometimes we called it “Braindead”. Little-D department stores were the precursor to K-Mart and Walmart, the mass merchandisers. Chains like Bradlee’s, Ames, Jamesway, and Clover were where people went for cheap clothes, housewares, etc. They weren’t the high end Big-D Department stores like Sears or Macy’s (down here it’s Belk’s), but they provided jobs to people like me who needed money for college.
Yes, the signs of degeneration were subtle. I would come off a shift of being on my feet for anywhere from eight to ten hours (not counting the time to count out the drawer) with legs that looked like a melting candle bulging over my shoes. I chalked the gross edema up to simply dependency, and back then, if I were sick and in bed for a full day, the edema would disappear.
Even after surviving the first year at Temple and going to Bob Jones, I kept up with the pace; you can’t pull a full premed load of classes and work 20 to 24 hours a week on campus jobs otherwise. I graduated with my name on a backup list for MUSC in Charleston and more prayers, because the alternative was to move with my parents to Connecticut where I would be under their collective thumb permanently.
You see, my getting a driver license was not a priority. Ever. I spent through tenth grade at Lansdale Christian Academy, the tiny school associated with Immanuel Church of the Nazarene, where my brother graduated high school. Because I transferred to Calvary Baptist in eleventh grade, I did not get to do driver training like the rest of my class did (since I simply wasn’t there in tenth grade when they all did the driver education course). I was eventually alloewd to take the driver ed course in twelfth grade with the tenth graders, but it was far to late to take the driver training, and my parents were not interested in the slightest in me having that skill because it would mean a step toward independence, and that was the last thing they wanted for me.
All of a sudden when my sister turned 16, driving became a priority – for her, not me. While I had to beg to be permitted to work at age 18, she begged and got special permission to work at 14, scooping at a Baskin Robbins. They had to sign all kinds of paperwork and agree to strict rules about work on school days and such, but they gladly did so to give her what she wanted. Ant when she turned 16, they sent us for driver training. You see, they didn’t trust her alone with a driver trainer, so by sending us both, I acted as a de facto chaperone – not because they didn’t trust their little angel but because they didn’t trust a stranger. The driver instructor did not like the fact that I pointed out stuff (like the time he took us to a street that had once been two-way and had recently been declared one-way but still had a double yellow line down the middle, and I pointed out that the cars were parked in the same direction on both sides of the street – making my sister able to choose the correct lane to get into to make a left turn, much to the driver trainer’s anger/disgust). SHE got a certificate of completion. I got a letter. She got her license. I failed twice, the first time because my mother’s hazard lights didn’t work (it was “my fault” for not “checking” to make sure everything was “operational” before taking the test) and the second time because I didn’t look both ways in the enclosed driving test course when the left way had an actual “street” and the right way was… a grassy hill with no possible potential of any oncoming traffic (“there could have been Indians come down the hill”).
All the while, my health was going downhill and nobody noticed, or cared.
I got to med school – the headaches involved with being forced to move in August instead of July deserve a post all their own, and the subsequent trouble it caused – and pushed. And pushed. And studied. And continued to break down. At the end of second year, I was unable to take finals. I sat out six months and worked, a medical transcription job for the ER that I heard about from a friend. I went back and completed second semester of second year, passed the first part of the Boards (different name now of course), and started clinicals. Several complications later, I found myself out of school at the end of the year, and – again by the grace of God – found a medical transcription job at the employer where I stayed for nearly 16 years until I was laid off.
With insurance, I was finally able to establish medical care. I still see the internist I started with in 1995. I don’t know what I’m going to do when he retires eventually. I saw a urologist for the first time at age 25 and finally, finally got at least a partial answer to why everything had happened: My “urethra” exits in the left vaginal side wall. At least, he swore up, down, left, and right that the structure he was able to identify, catheterize, and demonstrate on fluoroscopy was my urethra. Additional “evidence” to this effect was the fact that I did not possess an external urethral meatus in the traditional location, just a little indentation a little smaller than my pinky finger where it should have been. We didn’t pursue further “treatment” for this congenital anomaly because I was still able to live what amounted to a “normal life”.
From menarche, I had always bled heavily. So no surprise that I was on medication to try to slow it down, and even on medication, I bled to the point of anemia every month. The first sign that my general condition was getting too much for my body to handle came in the form of high blood pressure, as in 160 to sometimes 180 systolic, and we kept switching up medications to try to bring it down. Because down is better, right? Unless the REASON the blood pressure is high is because the body is desperately trying to perfuse vital organs and the reason it can’t is because the blood vessels are in slow leak mode 24/7/365.
This meant I was on several medications early. I was diagnosed with asthma as a child also (the Vicks Vapor Rub story is probably somewhere else here) which meant trying to get my asthma controlled enough to be able to handle an exercise routine. We found out the hard way I can’t handle oral steroids. I got to the point where I was reacting to literally everything – allergens nobody knew could be allergens, soaps, detergents, shampoos, anything in the air, the green-and-growing things I already knew I was allergic to from years of symptoms that persisted in spite of allergy shots, and the most devastating and persistent of all even after the steroids were discontinued, the mint/menthol/synthetic cinnamon one.
Yes… lots of meds, changing meds, back then drug reps brought samples and knowing our situation he gave me samples to try to ease the drug costs. Drugs for depression – who wouldn’t be showing depressive symptoms with what I was going through? – drugs for blood pressure, drugs from my GYN for the bleeding, more and more drugs. I was diagnosed with sleep apnea and started on CPAP also.
And my body continued to deteriorate. Every time my body tried to work around all the things we were putting in it to try desperately to perfuse, it backfired and we added some other drug to prevent it from doing what it was designed to do… all because I couldn’t deep sleep, self-repair, and fix the continuing and growing problems. It got to the point where I started saying my primary pathology is that I leak – at the tissue level – things go where they are not supposed to go (like allergens) and don’t stay where they are supposed to stay (like fluid in my blood vessels).
In 2010, the corporate pencil pushers decided it wasn’t worth the money to pay for hospital staff to do medical transcription when they could have outsourcers do it cheaper. I ended up working for one of those outsourcers for five years until my own health got so bad I couldn’t do it anymore. My internist agreed to disability, and that was now nine years ago…
In 2014, December, just in time to miss the Christmas concert, I was hospitalized with a 105 degree fever and an infection in the edema of my left leg. Yes, it takes something as drastic as that to keep me out of a major performance. Just saying. My left leg and especially my left big and second toes are disfigured as a result. I was back in the hospital in 2017, February this time, with another infection. Wound Care made my disfigurement worse. I can still walk, but it’s not easy. I have walked with a cane anyway since 2002, so it’s not new.
I thought menopause would make things easier. No more bleeding! Whoopee! Except it didn’t last. And when the bleeding came back it came with vengeance. And enormous clots. As in fist size. Yes, measured in inches. I ended up with a gynecologist from my former GYN’s practice (she retired). Because my son tore my cervix on his way out at birth, I have scarring that made it impossible for her to do a proper D&C and get appropriate endometrial tissue for analysis. I was eventually sent to Gyn Onc, and HE couldn’t get a good sample either – it was basically cellular garbage. He recommended a hysterectomy…
Problem is that tricky little “urethra” that comes out in the left vaginal side wall. Yes, that one. The one demonstrated in 1995 by a “real doctor”. A real urologist who had unfortunately also since retired. And when I was referred to Urology to try to get pictures of where this “urethra” was so surgical planning could be done, I was faced with a traitor. She refused to believe what I told her. I could tell the minute she stopped trusting the veracity of my story: it was when I said that prayer meant no more bedwetting at age 17. She said she needed to do a procedure that would show if there were problems with my kidneys. Except it would need to be done under anesthesia. How convenient that I would not be able to object or voice questions.
She did indeed do a procedure. She carved a path up where she assumed the urethra “ought to be” – a space that had never until June 10, 2025, been breached by any kind of medical instrument, and a space urine had never flowed down. Urine still did not flow down that space even after the procedure. I had two days of vaginal burning as my system cleared the contrast she refluxed up my ureters into my kidneys. Her first version of the op note that I read on the night of the procedure contained no language whatsoever about my anomalous path to the left vaginal side wall – it read as if someone had normal anatomy and a normal, anteriorly placed urethra. I called her out on it the next day. I naively believed that once a report was signed, it could not be altered without some kind of digital footprint. Boy, was I wrong. I had a follow up visit with her on July 10. She refused outright to actually look in my vagina, in spite of my pleas. I went to print the report and found the read flag flipped to unread. This sent a chill down my spine. Accessing the report on July 10 found a completely different op note from the one I read on the night of surgery. She had somehow found a way to add a ton of language that made it sound as if she had done extensive searching for this anomaly and simply found no evidence of its existence. The truth is she didn’t even look, but this report – not the first one, the one with the extra added stuff in it – has poisoned all subsequent medical inquiry.
We tried a VUG at MUSC. The tech kept insisting that the tiny less than 2 mm “urethra” that she couldn’t even find without my verbal direction was “normal”, and that sensing fluid flow out of it HAD to “feel normal” even when I kept telling her it was not. She put a 7 French catheter up that passageway – 2 mm is 6 French, and 7 French is internal diameter, not external, so her catheter was not only occluding but stretching the “urethra” – and then refused to believe when it came time to void that I could not (not would not but could not) because the passage was solidly occluded. Even once both the catheter in the “urethra” Dr. James had created and the rectal catheter were removed, I had to push like I was delivering a baby AND push with both fists from either side to get any fluid to come out because the artificial path was so narrow. Shoving a catheter up it also meant fluid could not flow down its normal drainage pathway into the vaginal outlet, and I couldn’t make either the tech nor the subsequent resident, M-IV, and attending understand that we weren’t assessing the structure we were supposed to assess.
The attending said we’d probably need to do a VCUG down in Radiology for “better imaging”, but I knew that as long as they kept trying to access the bladder via the artificial and already closing pathway Dr. James created, it wouldn’t show what we were trying to get it to show, that is, the pathway down to the vaginal side wall everybody keeps trying to pretend is not there. Even trying to have a VCUG done at St. Francis under the order from my internist got me nowhere, as they were completely unwilling to acknowledge the vaginal structure as a legit “urethra” for access purposes. The best they were willing to offer was a CT IVP, where contrasted fluid/urine would be generated after IV administration, with a scan to take place immediately after voiding to hopefully get some contrast antegrade into the thing we’ve been trying to assess all along – the one thing nobody in 2025 is willing to JUST DAMN CATHETERIZE IT and move on. Funny how it was so easy to find that in 1995, a urologist found it immediately, and in 2000 when I was in labor, the GYN found it immediately too (I was cathed after she put the epidural in because she didn’t want urine in the birth canal, which is perfectly understandable).
Back to the present. I have a hysterectomy (TRH/BSO) that is on hold indefinitely until we get the anatomy sorted out. I have a congenital anomaly that nobody wants to admit even exists much less identify and locate so we can make sure I will still be able to pee after they take out my uterus. I have continued health problems that cannot and will not be solved because I cannot deep sleep because if I do I will involuntarily urinate once I reach that state. And I have an entire medical team that seems unwilling to look any of these problems – or my history including the desperate prayer in 1986 – in the face and accept the truth that I have had to live with for what it is.
Welcome to my world.