Bladder Confidential: The Pee, the Whole Pee, and Nothing but the Pee
Folks, I just survived the most horrific month of my MS journey. I’d like to tell you about my experience in the form of a detective mystery. My story gives you all the clues. Let’s see if you can diagnose me before the reveal at the end. Here goes…
In March, it started with bladder symptoms — or to be accurate, one symptom: urgency. No pain or burning while peeing, just persistent urgency before and after. Years ago I was diagnosed with a spastic bladder and put on Vesicare to quiet the urgency and frequent urination, and it has worked well all these years. But now it suddenly became harder to pee, so I would bend forward and press on my stomach until I produced more urine. When it stopped abruptly, I then sat upright and bore down with my ab muscles to squeeze out the last drops. It was a pretty lame stream and I knew I hadn’t emptied.
My other MS symptoms got worse and my IBS changed
At the same time, all my MS symptoms worsened. My legs weakened even more than usual and my balance tanked. Chronic insomnia ramped up and robbed me of more sleep. My IBS with chronic diarrhea turned into chronic constipation, so I reduced the dosage of my yeast probiotic and drank Miralax as needed.
Trying to self-cath
I took a 10-day course of Cipro and my bladder quieted. But two weeks later the urgency returned. I took another 10-day course of Cipro but the urgency remained during the day. Then one night I woke at 3 a.m. with urgency and spent an hour on the toilet trying to pee to no avail. Then I spent another hour trying to self-cath but, as usual, I couldn’t find the urethral opening. Agitated, I went to bed, calmed myself and my bladder, and fell asleep.
Contacting my urologist
Stressed and worried, I contacted my urologist. I explained in detail all the methods I tried to self-cath: assumed all the positions, followed the diagram and instructions, tried to use a mirror to locate the urethra, and totally failed everything. “Doing all of that made me realize something, Doctor,” I told her over the phone. “I don’t have a urethra. I pee out of my vagina!” I thought it was a good joke and so did she.
A trip to the local hospital for an x-ray
The urologist suspected bladder stones and sent me to the local hospital for an abdominal x-ray. This was my first experience with coronavirus healthcare protocol and it made the pandemic more real for me. I walked in the doors of the ER and was stopped by two nurses in masks and gloves. One took my temperature, it was normal. She put a mask on me and let me proceed to radiology.
Difficulty walking due to dizziness and weakness
I hadn’t realized the extent of my worsened MS symptoms until I hobbled down the hall weak and dizzy, grabbing railings and walls along the way. Using my cane was suddenly not enough to steady me. Like a pint-sized Frankenstein I weaved and lumbered, stiff-legged and flat-footed, before finally reaching Radiology. I practically fell into the arms of Brett, the radiology technician. He was very concerned. He helped me onto the x-ray table and finished quickly. He took hold of me whenever I was on my feet so I wouldn’t fall and walked me out to my car. I thanked him profusely for his help and drove home, all the while feeling terribly dizzy.
An especially terrible evening
That evening, I completely fell apart. Strange noises echoed in my ears: a bubble bursting, a crackling sound, a boom, a whoosh. Electric shock-like sensations zapped upward from my neck to my head, causing little explosions in my brain and ears. My face became numb and tingling and tremendous pressure squeezed my skull and face. I developed a headache and my sinuses burned. The zaps moved below my neck to my arms, making them jerk. My head and arms shook with tremors. I fell in the bathroom but not all the way to the floor, catching myself on a shelving unit.
Hallucinations, urgency, and fear
I couldn’t watch television or read, so I made myself go to bed and fell promptly asleep. I woke in a strange bed in a strange room. I was in a twin bed, not my full bed. I looked to my left and saw my sister asleep in another twin bed. I couldn’t remember what happened during the day or when I went to bed. While lying there I soon realized I was in my own bed and had been hallucinating in a near-waking state. It was 2 a.m. and I got out of bed. Agitated, short of breath and scared, my bladder felt irritated and the urgency persisted. I hobbled back and forth between the living room and bedroom, crawling under the bedsheets only to get up again and head back to the living room to sit in my recliner, which I didn’t stay in either. I sobbed uncontrollably, my head exploding and dizzy. I thought I was dying and considered calling 911. Utterly exhausted, I went to bed and fell asleep.
Being catheterized by my urologist
The next day I had an appointment at the urologist’s office, for which I masked up. The x-ray was negative for bladder stones. The urologist, decked out in a gown, gloves and two masks, performed a bladder ultrasound and saw a full bladder. She catheterized me and remarked that my urine had a foul odor, something I’d noticed days before and which is an indication of infection. She also retained some for a urine culture and showed me the rest. I had retained 300 mL of very dark urine.
Dehydration and a neurogenic bladder
She diagnosed me with a neurogenic bladder, suggested that the dark color was from dehydration, and asked how much fluid I drank every day. I drink three 24 oz tumblers of iced tea and three 8-oz glasses of water. She told me to double the amount. The last step was to wait for the results of the urine culture. If there was still infection, we would try a third course of antibiotics, a different one this time. It’s possible that I became resistant to Cipro. The last procedure she performed was widening my urethra with a tool to make peeing and self-cathing easier.
Can you guess what caused my symptoms?
Before I share the results of the urine culture and the urologist’s final diagnosis, have you figured out what caused all my symptoms? Let’s see if you’re correct.
The next day I learned the urine culture was negative for infection. The urologist diagnosed me with severe dehydration and again advised me to drink a lot more fluid.
Since then I have returned to baseline and continue to drink lots of fluid, adding Gatorade and other sources of electrolytes to my daily hydration regimen.
A discovery about my body
Remember the joke I made that I don’t have a urethra and I must be peeing through my vagina? It’s partly true. A female urethra is usually located between the clitoris and vagina. Not mine, though. It is just inside the top of the vaginal opening! Hah.
My next assignment is to practice self-cathing while lying down. My doc ordered a special catheter that has an attached bag at the end. This closed system will catch the urine and keep it from spilling all over the bedsheets. Stay tuned to find out if I have any success.
If you have a bladder story of your own, please share!
How many specialists did you see before finding "The One"?