A year after having a lumbar fusion at the L5-S1 level of my spine, I began to urinate more frequently than usual. At first, my doctor explained it was from fibromyalgia. Like the 10 years of low back pain that led to the surgery, my symptoms of overactive bladder crept up on me. After a while, I realized there was a problem. When you’re not working and you’re not going anywhere socially, making 20 trips to the bathroom goes unnoticed. Without meaning to, I’d slipped into a state where obsessing over my health had been normalized. Because I was removed from everyday social interaction, I’d lost all sense of perspective, and the frequent trips didn’t seem unusual.
Friends and family encouraged me to revamp my social life, and as I did, friends told me that I went to the bathroom more frequently than anybody they knew. Some joked that going out with me was like going out with a pregnant woman. At that point, I used a journal to track how often I was going, and then later, how much was coming out. I drank eight glasses of water a day, the generally accepted recommended daily amount.
The hard part was that even though I drank enough water, not much would come out during urination. I would have to squeeze to get a little bit to trickle out. Previously, I’d never paid attention to how much was being released. As long as I felt relieved, I was OK. In public bathrooms, I took notice of the volume of other the men urinating and compared it to mine. They had solid streams while I had an anemic little dribble. These are the issues men deal with in their 50s from prostate troubles, not men in their 30s.
I made an appointment with my primary care physician. Try this pill. Didn’t work. Try this other pill. They had fun names such as Rapaflo and Flomax, things I wished described how I urinated. Some other pills we tried were Detrol, Myrbetriq, Toviaz, and Elavil. Perhaps reaching back for a midwife’s potion from a bygone era, he asked me, “Are you drinking cranberry juice?” After a couple of months, he referred me to my first urologist. The urologist tried two more pills before giving me a cystoscopy. I had nightmares for weeks anticipating this procedure. A long, thin tube, with a camera in it, is inserted into the penis, through the urethra, past the prostate, and into the bladder. This gives the doctor the ability to see the inside walls of the bladder.
The day of the procedure, the doctor and his female nurse asked me to get undressed and into a gown. While I was shaking in fear, the nurse calmed me down by talking about her sick cat who also suffered from a urinary tract illness. She placed her hand on my shoulder while the doctor shoved that thing into my penis like he was sticking a straw into a McDonald’s paper cup. I can assure you that I was NOT lovin’ it.
The urologist determined that my bladder walls were irritated, but he couldn’t tell why. This was enough information to tell him what to try next, which was—what else? —another pill. After that pill didn’t work, he sent me to his colleague in Des Plaines, a suburb of Chicago. As with the Illinois Back Institute in Wilmette, I had to do some finagling to use my partner’s car for that trip and follow-ups. Driving there was more painful than the cystoscopy.
This second urologist determined that I needed Botox shots in the bladder. That’s the same Botox Madonna uses to pretend she is still singing in the “Like a Virgin” video. It is now used for many medical purposes to relax muscles.
Before the procedure, I had a routine appointment with my psychiatrist. I mentioned the bladder issues. He informed me that lithium, a pill he had me on, had a side effect of dry mouth, causing some people to drink excessive fluids. But I measured what went in and out every day. He ordered a test of my lithium levels. They were fine. Then he asked to speak with my urologist before the Botox procedure. I have no idea what they talked about, but now I would give a million bucks to hear what they said to each other. My psychiatrist brushed it off as no big deal when I asked him about it. Since my surgery didn’t pan out well, I’ve had this distrust of doctors, even “trusted” ones, especially when things go wrong.
During my prep for the Botox procedure, I asked the urologist standing over me, “Do you think this is related to my back problems?”
He replied, “A lot of people come to me with bladder issues after having that surgery.”
Considering his answer busied my mind as the Botox was injected. By now, I’d already had several long tubes stuck into my penis, so I was used to it. Once it was in, there were 12 shots to the bladder wall that were not painful. When it was all over, I was thinking about the cat of the nurse of my first urologist. I wonder if he has to use a catheter.
The biggest concern with Botox is that it might not work. Given that I’d had little relief from all the other pills, that would not be surprising, but I was willing to give it a try.
However, the Botox treatment backfired, causing a different problem.
My bladder froze up and would not release anything. Then, the doctor had warned it would be up to a day before I could urinate. But after two days, I ended up back in his office because nothing came out, resulting in intense abdominal and groin pain. I had constipation of the penis. He gave me yet another pill that was supposed to help me urinate in the meantime. It didn’t.
After the doctor left the patient room, the nurse practitioner explained to me how to use a catheter, known in the industry as doing a “straight cath.” As she took it out of the package, she started laughing because, “I’m so used to explaining this to people in their 80s, not people in their 30s.” I laughed too because the likelihood of needing it was small. It was “just in case.” I didn’t know that I would spend the next two years inserting catheters into my penis 20 times a day. Joke’s on me.
I shuddered at the idea of using a catheter myself. It’s one thing to have a medical expert insert it, it’s another to have to insert it into your own penis, and several times a day at that. But I needed it because my bladder would not release anything, whether there was urine in it or not. So I took the catheters home and started using them on a regular basis.
Over the next few days, I would call the doctor and hear that it was any day now that my bladder would relax and I would no longer need to use a catheter. I would hear, “No longer than three days,” then, “No longer than three weeks.” Week after week became month after month. I still could not urinate on my own, no matter how many glasses of water I added.
I ran out of catheter samples. You can’t buy these in a store without a prescription, and there are only seven Walgreens in Illinois that sell them. None of them are near me or in downtown Chicago, which means another painful car ride. Not only did I struggled to get a prescription, when I finally found a pharmacy that had them in stock, the fax was never received by the pharmacy. During the finger pointing and assignment of blame, I still had to urinate. I took old catheters out of the garbage, washed them thoroughly with soap and hot water and reused them. Good God, that was a relief! The old saying, “When you gotta go, you gotta go” had never been truer. Of course, you are not supposed to do this, but I was desperate.
While waiting for the prescription for the catheters, the doctor suggested I go to the emergency room when I couldn’t urinate. But I had to urinate several times a day. Was I supposed to stick around in the emergency room all day? Since there was no cure for what I was going through other than waiting, this wasn’t considered a medical emergency. It was a health care industry failure. There was a product, a catheter, that could help, but I struggled to receive one due to insurance red tape, pharmacy snafus, and lost faxes. The funny thing is that these things are just plain plastic tubes with holes in the end. They are not some engineering feat or major piece of medical equipment to do a complicated test. I’m sure you could get these from China for one cent each if a prescription wasn’t needed. Did they think I was going to abuse the catheters? Sell them on the street corner to thugs or teenagers who would bring it to parties? I must be way out of touch with what the kids are up to these days.
After a third trip out to Des Plaines for nothing other than sample catheters, the urologist hooked me up with a company that would mail me a month’s worth. Why would I need a month’s worth, huh, Doc? I was supposed to be cured soon. “Just in case.” And they were right. I depended on those catheters for 25 months and I still use them today. Every month I would call the company up for a new order. I had gone through this call-and-order procedure for medications before, but never just to urinate. They cost $66 a month, after insurance. It costs more to urinate than my electric bill. How many people have a line item in their budget for urination?
With any medical procedure, you sign a pile of authorizations. One of the forms listed possible side-effects of Botox in the bladder. For 6% of patients, it will cause bladder retention. However, my doctor never mentioned that little detail. I would not have chosen Botox had I known my side effect would be losing the ability to urinate for over two years.
Upon losing patience with the second urologist, I found a third. He detected a tight bladder neck and said there was nothing else to do but wait for the Botox to release, which could have been up to four months. Friends and other doctors have criticized this move. People say I could have gotten better answers by staying with the doctor that did the original procedure. Again, as with the back pain, it is always the fault of the chronic pain patient. But really, my biggest motivator to switch to a third urologist was the distance. I had only agreed to go to the second urologist in Des Plaines because I was referred to him for a single procedure. Since I don’t own a car, I’d had to borrow my partner’s and suffer from my back pain the whole way there. If “just wait” was the answer, I might as well wait nearby.
It took a while for me to figure out, but I could save money if I washed out the catheters like I did when it was an emergency and I had no other option. By washing a few out, I could skip every second month of catheter orders. My third urologist said it was OK for me to reuse them as long as I washed them thoroughly, again, with soap and hot water. I am NOT suggesting anybody else tries this at home. They are supposed to be one-use only catheters.
Lubricating jelly packets come together with the catheters in a package. I was reusing the catheters but running out of the jelly. You cannot order them separately, so I tried Astroglide. When the new shipments of catheters and jelly came in the mail, I stuck with the Astroglide because it is not as abrasive. In other words, it burns less when inserting the catheter. I regret not figuring this out earlier. The lubricating jelly packets are sterile, or bacteriostatic, unlike Astroglide, but the third urologist agreed with the substitution. Again, I do NOT suggest doing this on your own without talking to your doctor first.
Inserting a catheter is not child’s play. It takes patience and sanitation. They are 14 inches long and go into your penis, through your urethra, then the prostate, then finally the bladder. It burns the whole way through. The catheter needs to be clean or you might get a urinary tract infection. There’s an emotional side to this. If felt shameful as well as physically painful. There’s a sense of violation, even when I’m doing it to myself, by myself.
In public, the horror escalates exponentially. I still have to do grocery shopping. I still have to take buses across town to see other doctors. My friends and family still expect me to visit places with them, to get out of the house and stop brooding about my back and bladder problems.
Had I been urinating normally, rather than with the overactive bladder, perhaps I could have hidden my catheter use. However, urinating many times a day is something you can hide at home, but not in public. The process got harder. Those accompanying me knew of these frequent trips, but now the trips would be longer in duration. I’d say, “Don’t wait for me outside the bathroom. Bring a magazine.” Friends started calling my catheters “Cathy the Catheter,” my new BFF. As much as I hated her, the relief Cathy brought was intense. To this day I don’t travel anywhere without her.
Not all public bathrooms are made the same. Many have not been cleaned in this century. Sanitation is always necessary when using a catheter. That is why they are one-use. Think about the importance of washing your hands, a non-invasive exercise, after going to the bathroom. Now think how important cleanliness is when using catheters, which are inserted inside of you and can cause infections if not pristine.
I have learned to pay attention to different types of bathrooms. One-person bathrooms are the best. In those cases, I can wash the catheter in the sink and put it back into the plastic wrap for reuse. In a dirty bathroom, I have to use a new catheter in a package and throw it out. I only wash and reuse in clean bathrooms or at home.
Next best is a stall that is pretty close to the sink where I can hope and pray that nobody else is in there. Worst is the row of urinals, where no stalls are available. Here there’s no privacy and has resulted at times to make my bladder feel as if it was about to burst. More than once I’ve been “caught” using my catheter at a urinal. Imagine the reactions. Some people assumed it was some sort of auto-erotic sex act, thinking I was a Republican senator in a Minneapolis airport. “No, sir, this is not my way of coming on to you.”
In the beginning, when I needed the catheter, I stayed at home as much as I could. Now when I go out, I make sure I know where the bathrooms are first. There are even apps for that. Bathroom trips still overshadow my schedule. Sometimes I’ll get off a train, go to the bathroom at McDonald’s, then get back on another train to finish the trip.
Chicago has a big homeless problem. It’s very prevalent downtown and in my neighborhood. Because of this, many stores and restaurants lock their bathrooms and restrict codes and keys to customers only. I’ve had to buy numerous coffees I didn’t want just to use the bathroom. Frequent bathroom trips have turned me into a “bathroom celebrity” at certain coffee shops and restaurants. At one Dunkin’ Donuts, the morning shift guy always smiles when I walk in and says, “Hey, it’s the Bathroom Guy.” He no longer makes me buy a donut in order to use the bathroom. Besides, I have the door code memorized.
My partner, friends, and family are supportive of me with this issue, although they question why it took so long for the bladder retention to release. “Try pushing. See what that does,” they would say. And of course I tried, but with no success. At first, I was very much “in the closet” about my catheter use, but after a while, it became too difficult to hide. Being honest with those closest to me about what I was going through was refreshing compared to keeping it a secret.
For the two family Christmas parties of 2013 and 2014, I had to talk to whoever was throwing the party that year to go over logistics. One year it was at my parents’ house, the other year at an aunt and uncle’s. Before the other guests arrived, I hid catheters in the bathrooms I would be using. There were extra catheters in my partner’s car, in my backpack, and at my parents’ house.
Like chronic pain issues for my sitting disability, managing my bladder comes down to planning and asking for what I need. I still have much to learn. Two years after the Botox treatment, the bladder has calmed down and I am able to get urine out some of the time without the catheter. Yet, I still bring Cathy with me everywhere I go. I also use her before bed so I don’t have to get up in the middle of the night. Unfortunately, I still have the urge to go, even when there is no urine in my bladder. The urge comes, I use the catheter, and only two ounces come out. I feel a world of relief, but only for a half an hour. Like the sitting disability, I manage, not solve, this problem.