The Chronic Pain You Don't Think About

How many times did you use the bathroom today? I’m not asking to be nosy, but I guarantee you I can beat your record. I stopped counting after I discovered it was almost impossible for me to sit in class for half an hour without getting up to go to the ladies’ room, but I would wager I have to urinate between ten and twenty times in the ten or so hours I'm awake. You can understand why I’m reluctant to talk about this part of my day, but the reality is that it actually has nothing to do with my bladder or urination: I suffer from chronic pain in my pelvic floor, the muscles around my hips, which affects the amount of stress on my bladder, which leads to that going to the bathroom twenty times a day.

It took a long, long time to come to this conclusion. I replayed the afternoon in June after a long car ride to western Massachusetts with a friend in my head over and over again, and what exactly happened when I thought “Huh, I really have to use the bathroom and can’t sit still.” When I returned to New York I went to my pediatrician – I was still in high school – and got tested for a urinary tract infection, was prescribed an antibiotic just as a precaution, and thought that would be that. However, my UTI bacteria test came back negative and I didn’t feel any better. This sent me down a rabbit hole of gynecologists, urologists, and urgent cares for the next couple of months. I was on a cocktail of medication, starting with a common UTI medication, pyridium, that in a stroke of morbid hilarity made my urine orange. I went on and off antibiotics as urine culture tests gave “mixed” results, and it is possible that I had a UTI at some point but the test results were foggy. I was on a bladder relaxer, then a pill called Elmiron meant to give relief to women with interstitial cystitis, a long-term chronic illness sometimes also called painful bladder syndrome. I apparently didn’t have that either, because none of those gave me any relief.

The combination of graduating from high school, traveling alone for the first time that summer, and then having to transition into college all while managing chronic pain, while taking an unhealthy amount of medication, and having to run through the street to find a bathroom whenever I went out was an enormous mental toll on me. I remember sitting in the office of a gynecologist and biting my lip to try not to explode into weeping as I attempted to explain to her the constant pain and discomfort I felt. That particular doctor narrowed her eyes at me and asked if I was sure I didn’t just have a UTI. The first urologist I saw, though he was extremely kind, could not figure out what was going on with me and just kept prescribing me medication. I was so desperate for some kind of answer that I asked the urologist's office to stick a camera up my urethra to check for inflammation. They couldn’t see any. I threw up in a garbage can on the way to work one morning after having taken pyridium for much longer than you’re supposed to – most UTI medication is only meant to be taken over a few days. I felt like I couldn’t explain to anybody how I was feeling because it seemed so unreasonable. The best I can explain it now is just a constant sort of ache that your body believes going to the bathroom will relieve, which it does not. I stopped drinking coffee, one of my favorite parts of my morning, at a urologist’s advice. It only made me feel worse to have given up something I liked to a pain that never relented. 

More than 30% of Americans are living with some form of chronic or severe pain. Source: Healthline. 

This whole ordeal was humiliating. Even writing about it, I worry that I am just inciting pity in other people and that the experience I’ve had with this wasn’t really that bad, so I should just "man up," so to speak. My partner at the time and I later split up across this process, and though I knew it was an irrational line of thinking I couldn’t help but partially attribute the chronic pain that had affected my mental health for our falling out. You put so much on him, having to deal with you complaining all the time, I thought. And why would he, anyway? You’re gross. You have to pee all the time. You made him do so much extra for you. You should’ve been able to handle it alone. The core of my misery and guilt at that moment was that I felt I had lost a part of my emotional support system, but I sure didn’t lose my chronic pain. From dealing with this, I learned something valuable which is that no matter how much any friend, family, or partner loved me they would not be able to make my pain go away, and I had to somehow level with that and seek internal peace as well as external support. But I still raged that I was going to feel this way forever, I was never going to be able to have a second without feeling some kind of physical discomfort. Beginning to practice yoga when I started college honestly saved my mental health in this time period. I gained some control over my body and was able to unwind and relax a little bit. Friends and family definitely were there for me, and I discovered that most of my female friends had dealt with some kind of discomfort in their urinary tract or vagina before and it was not as taboo as I thought.

Eventually, I started seeing a female urologist at a local hospital. She told me that it was actually fairly common among young, physically fit people to develop what’s called “overactive bladder”  because of overworking your core and pressing too much on your pelvic floor muscles. I was a serious fencer all throughout high school, which requires standing in an unnatural position that strains your hip flexors, so this actually made a lot of sense to me. I was given a test called urinalysis, which involves measuring how your body responds to urinary urgency. During that test I saw how when I used the bathroom, there was so much pressure on my sphincter that it created a jagged red line on the graph of the hospital apparatus. That red squiggle looked like a visual representation of how I felt all the time, uncomfortable and on edge. I nearly cried from the relief of simply seeing that what I felt was real and not just in my head somehow. That day my boyfriend, who had sat with me while I got catheters stuck between my legs and made me laugh, and I went back to my room and made pasta and sauce from scratch. He humored me wanting to walk through the cold and go on the Roosevelt Island Tram from Manhattan to just have a moment to think about one day being able to see the world around me without the distraction of chronic pain.

My eventual diagnosis makes light of the fact that there is a big difference between fitness and health. I don’t know how exactly I developed pelvic floor pain, but I was by all accounts an incredibly fit person, having been a student-athlete for four years and a frequent purveyor of the gym. But despite however my body looked or how far I could run, I was not at a comfortable level of health. These days I practice yoga and go running, and make sure not to push myself beyond a comfortable level, God knows managing a college workload is hard enough without worrying about your body. I am currently searching for a physical therapist and was told that an hour a week of physical therapy for the next couple months should yield me relief. I feel that my story – which is by no means over -  highlights how hard it is to get proper care for any health issue as a woman simply because of the psychological barriers we put on ourselves – I constantly felt degraded by the special copays to my specific doctors and the sheer shame of coming to anybody with an issue related to my groin area. I worried that whatever I was feeling wasn’t real. I still worry now that somehow physical therapy won’t work, because so many things haven’t. But if you suffer from any kind of chronic pain, if you now dread going to the doctor or have trouble sleeping or have had to sequester yourself to a public bathroom to cry, you are not alone and there will be good moments to make up for all of the bad ones. Try to talk to the people in your life about it, because they do care, and know that your inner strength is going to be enough.