Why I'm Speaking Out About My 'Embarrassing' Lifelong Struggle With Neurogenic Bladder

When I was in fourth 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 the bathroom, but for some reason, the shorts caused me to leak before I could make it to a restroom. I never told anyone. I didn’t let the teacher know. I didn’t tell my mom when I came home from school. 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 peeing myself was my fault. Since it didn’t happen when I didn’t wear those pairs of 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 when I felt I didn’t need to use the restroom during a class break. However, halfway through the break, I realized I needed to pee, and I 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 even though 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 to pee. My bladder wouldn’t cooperate, though. Once my classmates left, I was finally able to use the bathroom. 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 electric clocks at home that told the time using recognizable numbers. I answered that I didn’t know.

“So I guess you need to learn how to read time now,” my teacher responded.

Not only was my teacher putting a lot of attention on me for taking a while in the bathroom, but I was also made to feel “stupid” for not being able to tell time (a skill I memorized for hours and have never forgotten since). I felt so embarrassed and ashamed.

My restroom situation didn’t get better after that incident. I continued to take longer than my classmates in the bathroom and often went to the bathroom when breaks presented themselves. My classmates, by contrast, didn’t need to go as often. As I got older, these issues got worse until I found myself going to the bathroom nearly every 30 minutes and spending an hour-and-a-half trying to pee when I was at home. It would feel like my bladder was full, but when I went, hardly anything came out, causing me to spend more and 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 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 I 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; other times, heat did. Most often, nothing helped aside from time. I also had a hard time sleeping because of the pain and my need to rush to the bathroom several times each night.

I often thought I had a urinary tract infection (UTI), and I regularly went to my doctor to get a urinalysis done. 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 anywhere from 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 somewhere to use a bathroom — even though I went to the bathroom before I left. When I got 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 still 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, which made me often wish I could just be “normal.” I found myself not wanting to leave the house for fun, feeling that my bladder would take away any fun that my friends and I 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 my family late again or that I needed to manage my time better.

At a certain point, I wondered if I was intentionally taking forever in the bathroom. Was it just anxiety? 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 deeper was going on. 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 condition I was diagnosed with late in middle school or early in high school). Normally, urinary muscles and nerves work together to hold and release urine at the right time. The nerves carry messages between the brain and spinal cord and the bladder, which causes the muscles to either tighten or release. However, with a neurogenic bladder, something impedes this communication. There are many different possible causes for this impediment but in my case, it could be spinal instability or a tethered spinal cord or dysautonomia. And both of these conditions are linked to my Ehlers-Danlos syndrome — a connective tissue condition.

I was also diagnosed with interstitial cystitis (IC). IC is a condition in which the bladder’s walls are inflamed or irritated, possibly causing the bladder to become stiff or scarred. IC was the reason I often felt like I had a UTI even when I didn’t.

On one hand, I felt relieved to know that my issues in the bathroom weren’t imagined but were instead based on something physical. On the other hand, hearing that I had an incurable condition made me feel afraid. Could my situation improve? Would my condition worsen? Or was my present situation how I’d feel for the rest of my life?

The only way to find out was to start treating my bladder. I was put on a medication that relaxes muscles in the bladder. When I first got the medication, I remember laughing when reading a sticker on the bottle that said something about prolonged erections or abnormal ejaculations. 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, though, there were unforeseen consequences with the medication.

At first, I noticed 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 my medication 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 or five more years, I declined physically. I felt so weak I could barely walk or sit up and considered 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 my bladder control medication actually did cause those symptoms. Though I worried that my bladder would become harder to control, 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 for my bladder. This physical therapy focused on strengthening and relaxing the muscles that make up the pelvic floor. I had no idea that PT like that existed before starting it. I doubted it would help, but after some time, I found that it did. PT was actually just as effective as the medication was. So, when I had to stop the medication, my bladder didn’t become harder to control. In fact, my bladder stays calmer now.

As long as I kept up with my PT exercises, I got fewer 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 three to four hours and stayed hydrated, I didn’t have much pain or bladder fullness, but I still took longer in the restroom than my peers.

It was in my sophomore year of college when I realized my neurogenic bladder was still embarrassing and annoying me. I was living 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 conditions. I thought they understood. However, one night, I got up to go to the bathroom. When I was in the bathroom, I heard a door open and then another 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 in the restroom, 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 my condition would be understood rather than mocked. Still, I always tried to be quick in the bathroom 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. 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. I also use panty liners every day because I still have uncontrollable leaks from time to time. When I hung out with my girlfriends, that wouldn’t have been a big deal. But when I spent time with guy friends, the idea was a lot more embarrassing.

I used to think that this condition made me “disgusting” and “weird.” I disliked my body for not being able to function properly. 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 my life is like until they’re older. However, I am doing what I can to control my bladder and prevent it from getting worse. It isn’t my fault that I still take longer in the bathroom 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 that certain systems have less functionality than others.

I know it will take time for me to stop feeling embarrassed about my bladder and accept that it isn’t my fault others get annoyed with me. In order to achieve this, I felt it was important to talk about it. Part of why these issues are “embarrassing” is they aren’t considered “normal.” I hope that being open about bladder control will not only help me move forward, but will also help others talk about it too. I feel I am on the path to accepting myself for everything I am — bladder dysfunction and all.