My Life with a Dysfunctional Bladder

Two months after graduating from high school in the summer of 2016, something just didn’t feel right. I had just begun working my first full-time job and I had felt fluid come out of my lower regions. It wouldn’t stop, and it wouldn’t cease for several years. I’ve been chronically ill with a condition that affects my bladder for the past four years, and it isn’t going anywhere anytime soon.

From 2016 to this past spring, I had been to several different doctors for check-ups, new prescriptions, and some uncomfortable procedures. I would almost always cry in my car after leaving the doctor’s office because they never could give me an answer to why my body was doing what it was doing, and what I can do to try to feel better. I don’t blame any of my doctors because I know that they do not know everything, but it was always a slap from the universe when I tried to get help but nothing could be done.

My adventures at the doctor’s office began in December of 2016, five months after first experiencing symptoms. I had waited this long because part of me thought that it would just go away. I booked an appointment with my pediatrician and was told that I probably just had a UTI, despite not showing any symptoms. I left feeling hopeful that maybe I did just have a simple UTI, and took my prescribed antibiotics, hoping that the drugs would clear everything up. But nothing had changed.

My pediatrician had also referred me to a urologist at the local university, and I had gone in for my first appointment there in the winter of 2017. I immediately felt so out of place. I remember sitting in the waiting room to be called back and everyone else in the room was 70 or older, while I was 19. The urologist had checked my muscle and nerve function and couldn’t see anything wrong. She prescribed me a muscle relaxant that would either make my condition way worse or much better. I was already miserable at this point and with nothing to lose, I began taking the medication for the next several years. It hasn’t really made much of a change in my body, for either better or worse, but I was scared of what might happen if I had stopped taking it.

A couple of weeks before Christmas in 2017, the doctor had brought up the idea of what sounded like an extremely uncomfortable procedure to see how my bladder would react to being pumped full of water. Again, because I didn’t know what else to do and with no stepping stone to go off of, I figured that I might as well have the procedure done. But the next available appointment was for the morning of Christmas Eve, which was also when my best friend was moving from Washington to Oklahoma. I also couldn’t find much information on the procedure when googling it and my doctor didn’t tell me what to expect. I was a generally anxious person before my body flipped, and my anxiety didn’t get any better when my bladder began to fail me. I never went in for the procedure.

I gave up on doctor’s appointments after that point and kept taking the muscle relaxant. My bladder still wasn’t cooperating with me, and I had thought that maybe it was because I was working a graveyard shift at the time. I’m no scientist, but working a graveyard shift brings upon stress that doesn’t necessarily occur for day dwellers. This can include increased blood pressure. I thought that maybe if I went off of graveyard for a while, my body would begin to heal. But then I remembered that my issues with my body began when I was working a day shift, and being nocturnal probably didn’t have much of an effect on my condition. Fluid kept coming out of me, I didn’t want to ever drink water, and being miserable is too small of a word to describe my mood.

I might have been experiencing depression (I never went to a psychiatrist). I didn’t go out for two years because I was always worried about leaking through what I was wearing. I maintained my 40-hour per week schedule, which was where I also met my best friend. If I didn’t have him to make me laugh four out of seven nights a week, I might not still be alive. I was also a full-time student at the time, and I wasn’t getting much sleep. I also wasn’t paying much attention to my diet, and my anxiety was getting worse. I was being forgetful and was having to quadruple check the simplest things before I could rest. I began taking progesterone-only birth control just to see if it would help, but all it did was prevent pregnancy.

This anxiety was further compounded by being sexually harassed by men old enough to be my dad at my job. I was physically intimidated and I couldn’t leave my job because working during the night gave me a sort of privacy to get my act together with my body. I eventually left the company and began working at another job before leaving them too. I was also stressed over having to be around people all day when I wasn’t confident with the current state of my body. I’m now in a good place and I’m not embarrassed to talk about my health issues, but I couldn’t say the same thing a year ago. In the summer of 2019, I decided to drive for DoorDash and I’ve been making more money doing that than I ever did with an hourly wage. I finally had the freedom to be alone at work while texting friends between drives. It wasn’t perfect, but it definitely took a load off of the stress that I was experiencing just from being alive.

Also in 2019, I thought that I might as well go in for a yearly check-up, just to make sure that the rest of my body is doing fine. I didn’t want to go back to the pediatrician, and I probably couldn’t have because of my age. I began looking for a doctor who took my insurance and went to a practice a few towns over from me. Long story short, the doctor smirked when I told her about my health and charged me $40,000 for a blood draw. I wish I was kidding. I got through the appointment fine, but I lost a lot of trust in medical professionals because of her.

By this point, I had read that some foods can trigger incontinence. I began to cut some of these foods out, but I wasn’t taking it that seriously and I hadn’t changed my diet for long enough to really feel the results. I moved to southern Utah in August for university and then moved back after one semester to attend another school in my home state of Washington. I began to wonder around this point if it could be a nerve issue. I hadn’t consumed animal products for a few years and had an “a-ha moment” at the gym one day. Could I be B-12 deficient? After getting back in my car, I looked up possible side-effects of a B-12 deficiency (which is rare) and saw that it can heavily impact nerve function.

I began to take B-12 supplements and made an appointment with a nurse at a new clinic to ask about this possibility. She sent me for a blood test, and the results didn’t really explain much of anything. This was in December of 2019.

By this point, I didn’t know what to try except to follow a very strict diet that omits anything with citric acid in it, lactic acid, chocolate or spices. I also couldn’t drink anything carbonated, caffeinated, or alcoholic. While this severely limited what I could consume to 10 different things, I had finally, after 3 and a half years, felt some relief! God bless. But I was now facing a new issue. It sucks to be confined to only being able to eat 10 different things. I couldn’t eat anything from a restaurant, nobody was allowed to cook for me because my diet was so limited, and only eating avocados, eggs, plain chicken, and carbs for months is bland. All that I wanted was a beer, Taco Bell, and an orange.

Then I discovered ‘Pre-lief’, which are pills that take nearly all of the acidity out of food and beverages as you consume them. The pills are basically just calcium and neutralize the acid of the food without actually affecting the stomach. I was about to get my period on the day when I went into Walgreens to buy my first bottle of these pills. I was craving a cheeseburger and went through the Jack in the Box drive-thru, ordering the greasiest burger possible. It was two patties, cheese, pickles, ketchup, and mustard, basically everything that I hadn’t allowed myself to eat for nearly six months. I cringe when people say that food can be orgasmic, but it was a nearly sexual experience eating pickles with mustard and cheese. I popped six of the pills with my dinner, and I didn’t feel the effects of it on my bladder. It was a miracle. The pills are a lifesaver.

Today, I’m still strict with my diet and take those pills. I no longer take any prescription medication, I’ve found a doctor that I can trust, and I’m generally doing fine. But my body is never going to go back to how it was before. I have an intolerance to certain ingredients, and while I can be as diligent with my diet as I want, it isn’t reversible. I’m going to have to take care of my body for the rest of my life in this way. And it doesn’t ever really seem to get any easier.

From a medical perspective, my body is functioning fine and I don’t ever really think about my previous health struggles anymore, except for when I get my period. The feeling of bleeding is very similar to that of losing other fluids. But there’s mental trauma that’s occurred over the past four years that is difficult to address. Some of it is fairly superficial, such as not being able to wear shorts or dresses (like every other girl my age) because I would be too worried about leaking, which isn’t a normal thing for someone my age to have to even consider. I wasn’t able to go to a four-year university immediately after high school because of my body’s lack of cooperation. Then there are more serious things. I nearly committed suicide because nothing was getting any better. It didn’t feel worth it to keep living in my body, and some days were just worse than others, but you don’t know how long the symptoms are going to last when they are happening. I’ve also self-harmed.

I ran half-marathons before everything happened, and I loved to train for months before a race. But I had to quickly give up running because the movements can also cause stress on the bladder. I’m now able to run without issue, except for being out of shape:) Being the only young person in a doctor’s waiting room with a bunch of people aged 70 and up made me feel like an anomaly. Not wanting to go out and see friends outside of work is isolating. I don’t know what I would have done if I had hadn’t met my two closest friends on graveyard. I never told them about my health, but their ability to make me laugh and smile about other things was a very welcomed distraction. I traveled often during this time just to have some separation from my family and friends, as some relationships became strained as I had trouble relating to people who had never experienced chronic illness. Not being able to relate to others is still a massive struggle of mine, and I’m doing my best to catch up on the life that I missed when I was sick.

I can’t see much of a bright side yet, but I’m grateful that I had these issues with my body when I was young (it started when I was 18, I’m 22 now). I’ve learned that I can get through longterm stresses, and I’ve never had to rely on myself and hopeful feelings until this struggle. And when coronavirus first become a concern in March, my world had already been on fire for four years and I could take some more heat.

I was never told by a doctor that the root of the issue could be food-related, and I had decided to completely change my diet on my own volition, but it luckily worked. My body is still far from perfect and I’m learning to love it, but some days are definitely easier than others. I’m grateful to have gotten through the worst of it (knock on wood) and to still be alive.

Kataryna