by Briana Livelsberger
When I was in 4th grade, I started to wear shorts under my skirts in case anyone tried to fling them up. 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. 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 know when I needed the bathroom 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.
Sometime after I stopped wearing those shorts, there was a day I felt I didn’t need the restroom during a class break. However, partway through the break, I realized I needed to pee, and it couldn’t wait. I went to the bathroom, but some classmates were in there as well. I picked a stall and found that I couldn’t go. My classmates saw me enter the bathroom and, while it is normal for humans to pee, I didn’t want them to hear me peeing. Knowing that I’d be late if I didn’t go right away, I tried. My bladder wouldn’t cooperate. 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. The class had already started. 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. I answered that I didn’t know.
“So, I guess you need to learn how to read time now.”
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 and have never forgotten since). I felt so embarrassed and ashamed.
It didn’t get better after that. I continued to take longer than my classmates in the bathroom and often went to the bathroom when breaks presented themselves while my classmates didn’t need to as often. As I got older, these issues got worse until I found myself constantly going to the bathroom around every half hour and spending and hour and a half trying to go when at home. It would feel like my bladder was full and yet, when I went, hardly anything came out, causing me to spend more time on the toilet. Whenever I would stand up again, it was difficult to walk since my legs had fallen asleep. 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. I had a hard time sleeping either from the pain or needing to rush to the bathroom several times in one night.
I often thought I had UTIs (feeling burning, bladder pain, etc.) and I often 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.
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 and I’d still end up running late. 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, but I was also 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 also got anxious whenever I needed to go to appointments, worried about what my bladder would do. 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 with a problem I didn’t know much about.
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 a urologist. There he diagnosed me with a 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).
I was also diagnosed with Interstitial Cystitis (IC). IC is a disease in which the bladder’s walls are inflamed or irritated, possibly causing the bladder to become stiff or scarred (CDC). IC was why I often felt like I had a UTI even when I didn’t.
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 taking 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 to strengthen and relax the muscles. I had no idea that PT like that existed before starting it. I doubted 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 my roommates 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 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’s 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 do 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 talk about it too. I feel I am on the path to accepting 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.
Original Posted on Necessary Behavior: https://www.necessarybehavior.com/blogs/news/an-embarrassing-condition?_pos=14&_sid=ef8bcfe07&_ss=r
Edited 1/11/2022
Sources:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/neurogenic-bladder
http://www.dysautonomiainternational.org/page.php?ID=34
https://www.karger.com/Article/FullText/360529
https://www.webmd.com/drugs/2/drug-151903/rapaflo-oral/details
Briana Livelsberger 
Leave a comment