Written By: Briana Livelsberger | September 9, 2020
When I was in 4th grade, I started to wear shorts under my skirts in case anyone tried to fling them up (to keep pesky boys from getting a peek). However, something odd started happening. Whenever I wore those shorts under my skirt, my bladder was harder to control. I often found myself peeing a little when my bladder started to feel full. Normally, I could keep myself from peeing until I reached a bathroom. For some reason, the shorts caused me to leak before I could make it. However, I never told anyone. I didn’t let a teacher know. I didn’t tell my mom whenever I came back home. I was embarrassed that I, a big kid, was peeing myself. I thought if I told anyone, I would be told that I was old enough to not do that and that I needed to do better, that it was my fault. Since it didn’t happen when I didn’t wear those shorts, I asked my mom if I could stop wearing them, saying that they were uncomfortable. And thus I solved the problem. Or so I thought.
Also in fourth grade, there was one day I thought I could go without using the restroom during a break. However, partway through the break, I realized I couldn’t wait any longer. I went to the bathroom but others were also in there. I picked a stall but I couldn’t go while my classmates were around, no matter how much I tried. Once they left, I was finally able to go. Before I walked back into the classroom, I knew the break had ended. I just hoped it hadn’t been too long or else I would get in trouble. I entered the classroom and returned to my seat. But sure enough, the class had already started again. My teacher stopped talking and directed his attention to me. “Do you see what time it is,” he asked while pointing to the clock. The clock used roman numerals and had two hands, unlike all the clocks at home that were electric and told the time through recognizable numbers. So I answered that I didn’t know. “So I guess you need to learn how to read time as well.” Not only was a lot of attention put on me for taking a while in the bathroom but I was also turned into an idiot for not being able to tell time (a skill I memorized for hours after I got home). I felt so embarrassed and ashamed.
Back then, I was probably experiencing early symptoms of a disease called neurogenic bladder (a disease I was diagnosed with late in middle school/early high school). Johns Hopkins says that, normally, “muscles and nerves of the urinary system work together to hold and release urine at the right time.” The nerves are the ones that carry messages between the brain/spinal cord and the bladder, which causes the muscles to either tighten or release. However, in a neurogenic bladder, something impedes this communication (Johns Hopkins). There are many different possible causes for this impediment but, in my case, it could be an issue with my spine (spinal instability or tethered spinal cord) or because of another disease I have called dysautonomia (a term that describes diseases that create a malfunction in the autonomic nervous system according to Dysautonomia International). And both of these issues are possible because of my Ehlers Danlos Syndrome (connective tissue disease). Because of the fact that there are issues with the brain/spinal cord’s ability to communicate with the bladder, it is also common for a lack of communication to occur that causes one’s sex drive to be little or nonexistant. Though, part of this issue could also be that having a neurogenic bladder makes one dislike the idea of sex and, therefore, causes one not to think about it (Vodusek D.B.).
Back in fourth grade, I do remember taking longer than my classmates in the bathroom but I attributed it to having a hard time peeing if I wasn’t alone. I also often went to the bathroom when breaks presented themselves while my classmates didn’t need to go as often. As I got older, these issues got worse until I found myself constantly going to the bathroom around every half hour when at home. It would feel like my bladder was full and yet, when I went, hardly anything came out. Even though I knew my bladder wasn’t actually full, trying to go longer without rushing to the bathroom often caused leakage and bladder spasms*.
If I waited too long or if I didn’t wait long enough before going to the bathroom, my bladder would spasm. If I didn’t drink enough or if I got stressed, my bladder spasmed. It would become really hard to breathe whenever the spasms hit and it would be difficult to do anything other than grab at my abdomen while hunched over as I either rushed to the bathroom or rushed to sit down. There wasn’t much that helped ease the spasms. Sometimes going to the bathroom helped, sometimes heat did. Most often, nothing helped aside from time.
When I would go to the bathroom, I would spend an hour and a half in there, desperately waiting for everything to come out. Since my bladder felt full, it seemed like something was keeping my bladder from emptying, causing me to stay on the toilet for so long. Whenever I would finally stand up again, I had a hard time walking since my legs fell asleep. At night, I went to the bathroom several times, making it difficult to get much sleep.
I often thought I had UTIs (feeling burning, bladder pain, etc.). I constantly went to my doctor to get a urinalysis done. And while there were a lot of times when I did have a UTI, most of the time I didn’t. However, this feeling was caused by another disease called Interstitial Cystitis (IC) that I didn’t know I had. IC is a disease in which the bladder’s walls are inflamed or irritated, possibly causing the bladder to become stiff or scarred (CDC). Basically, my bladder is messed up.
All of this combined made me dislike going anywhere. Since most of my doctors were an hour and a half to two hours away, there were times when I couldn’t make it throughout the entire trip without asking to stop off somewhere to use a bathroom, even though I went before I left. When getting ready for appointments, I saved an hour before it was time to leave in order to use the bathroom. I always went to the restroom at the doctor’s office and, while I tried to be quick, I would take a long time.
Not only was all of this frustrating for me, I was well aware of how frustrating it was for others, making me often wish that I could just be “normal.” I found myself not wanting to leave the house for fun, feeling that my issues would take away any fun that I and those around me could have. I disliked being told that I made us late again or that I needed to manage my time better.
At a certain point, I wondered if I was intentionally taking forever. Was it just anxiety? I know now that the anxiety was caused by my bladder setting off my autonomic nervous system (responsible for the fight, flight, freeze response), not from something in my mind. At the time, it felt like I was creating an issue rather than trying to cope.
Either way, it was clear that something was wrong with me. Wondering if I had the same bladder problems she did, my mom got me in to see an urologist. There he diagnosed me with a neurogenic bladder. On one hand, I felt relieved to know that my issues weren’t imagined but based on something physically wrong. On the other hand, hearing that I had another incurable disease made me feel afraid. Could things improve? Will they get worse? Or was my present situation what the rest of my life would look like?
The only way to find out was to start treating it. I was put on Rapaflo, a medication that relaxes muscles both in the prostate (if you have one) and the bladder. This reduces the feeling of urgency and helps one start and stop the urinary stream (WebMD). When I first got it, I remember laughing when reading a sticker on the bottle that said something either about prolonged erections or abnormal ejaculations (both of which are side effects for males). I joked, “I guess I need to be careful about getting too excited.” But what wasn’t a joke was the fact that my bladder did improve. Unfortunately, there were unforeseen consequences.
At first, I noticed that I was getting migraines more often and I felt weaker. I became dizzy frequently. However, when I brought this up to my doctor, I was told that Rapaflo doesn’t cause those symptoms. Thinking that my other diseases were flaring up, I continued on the medication since it helped my bladder. After four to five more years, it was worse. I felt so weak I could barely walk or sit up and was considering getting a wheelchair. I had multiple migraines every day. I was dizzy and nauseous all the time. This time, when I talked with the same doctor, I was told that Rapaflo actually did cause those symptoms. While I was worried that my bladder would get worse, I stopped the medication. I became less weak and dizzy. However, I never improved to where I was before the medication, leaving me with frequent migraines and weakness.
Luckily, I was doing physical therapy at the same time for my bladder. PT focused on the muscles that make up the pelvic floor, the goal being able to strengthen and relax the muscles. I had no idea that PT like that existed before starting it. I had doubts if it would help but, after some time, I found that it did. PT was actually just as effective as the medication for me. So, when I had to stop the medication, my bladder didn’t get much worse. In fact, my bladder has stayed calmer even now.
As long as I kept up with my PT exercises, I got less bladder spasms and less irritation. I spent less time in the bathroom than I did before being treated. As long as I went to the bathroom every 3 to 4 hours and stayed hydrated, I didn’t have much pain or sense of fullness. But I still took longer than my peers.
It was in my sophomore year of college that I realized my neurogenic bladder was still embarrassing and annoying when I lived in an on-campus apartment with people I didn’t know. Before the semester started, I let them know that I take longer in the bathroom because of my health issues (I didn’t want to get more specific than that). I thought they understood. However, one night, I got up to go to the bathroom. While in the bathroom, I heard a door open and then another one open not long after. One of my roommates said to the other, “I need to go to the bathroom,” after a few moments of silence had passed. The other responded, “Yeah, me too,” and then they laughed. I felt embarrassed. I tried to be quicker but that only aggravated my bladder and made me take longer. From then on, I avoided living in suites or apartments with people I didn’t know. I wanted to give them a warning that I take more time in the bathroom and know that it would be understood rather than mocked. Even still, I always tried to be quick because I was worried I’d cause someone to be late if I took too long.
I also never used the bathrooms in my friends’ rooms whenever I’d hang out with them. I avoided using them for two reasons. The first reason was that I didn’t want any of them to know how much time I took to use the bathroom. I thought it would be awkward since most others my age didn’t need a lot of time. The second reason is the fact that I use panti-liners every day because I still have uncontrollable leaks from time to time. When meeting with “girl” friends, that wouldn’t have been a big deal. But when meeting with “guy” friends, the idea was a lot more embarrassing.
I used to think that these issues made me disgusting and weird. I disliked my body for not being able to function properly. And there was always a part of me that felt like I was an annoyance because of my neurogenic bladder.
Now, I think I’m finally understanding that there isn’t anything to be embarrassed about. It isn’t fun to have bladder problems and it sucks that my peers won’t understand a portion of what it is like until they’re older. However, I am doing what I can to control and prevent it from getting worse. It isn’t my fault that I still take longer than others or leak when others don’t. And it doesn’t make me disgusting or annoying. My body is doing what it can to keep me alive which sometimes means keeping certain systems mostly normal and other ones being left to make due with less functionality.
I know it will take time for me to stop feeling embarrassed about it and accept that it isn’t my fault others get annoyed. In order to achieve this, I felt it was important to talk about it. Part of why these issues are embarrassing is because they aren’t considered some version of “normal.” I hope that being open about this will not only help me move forward, but maybe it will help others be able to talk about it too. At any rate, I feel I am on the path to being able to accept myself for everything I am, bladder dysfunction and all.
*If you don’t know what a bladder spasm feels like, it’s like an electric, pulsing pain that jabs you several times all at once, each jab sending a wave of pain throughout the rest of the bladder.
