I Was Misdiagnosed With a UTI Over And Over…

I Was Misdiagnosed With a UTI Over And Over…

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I remember the first time I needed to verbalize the pain caused by Interstitial Cystitis. I was going to a gymnastics meet in upstate NY and was about 7 years old. My family stopped at a rest stop, and I went to pee. I sat on the toilet, and nothing came out, but I still sat, relaxing my muscles until my mom called my name. I needed a minute, and she asked what was wrong. My urethra was spasming, but at the time, I didn’t know how many holes I had “down there” (aka: vagina, answer: 3), so I was at a loss for words. I was incapable of describing it, screaming silence. This wasn’t my first time experiencing this type of painful and uncomfortable episode, a symptom of interstitial cystitis aka painful bladder syndrome/interstitial cystitis, or BPS/IC.

IC is a pervasive chronic pain condition that is only extremely recently being recognized by the medical community within the last 10 years, having always been overshadowed by the common and easily treatable UTI. BPS/IC’s origin is still a medical mystery, but many likely possibilities are increasingly being researched and written about. I’ve had interstitial cystitis or as long as I can remember. I remember it at 16 years old and 11 years old and 7 and much younger.

I left the stall with the inevitable goosebumps and frozen tightness about my body I couldn’t release. I didn’t know whether the sensation was having to pee or having nothing left to pee. As usual, the feeling was vague and broadly painful, but this was the first time I was old enough to want to describe it aloud. When I got to the car, my mom encouraged the conversation among the family, and my dad asked me to describe the feeling. (By the way: in psychiatric terms, our family is called “enmeshed,” although my mom refuses abnormality is the case. Abnormality IS the case.) Okay the following is going to be sad and pathetic, but it’s also a little funny, so seriously, it’s okay to laugh. I believe I described the feeling as “salty,” lmao ): I meant it felt like if my effing vag was a wound and salt was all up in it causing lightning pains and a dull, sour discomfort. Keep reading because there is some good news: I no longer consider my vagina a wound – yes! You guys, we did it!

I was consistently anxious growing up, and the boldest pattern I remember about the pain was that it coincided with anxiety. My parents were obsessed with filling my time productively, and I had a lot of anxious energy to expend, so I was privileged enough to do a lot of extracurricular activities. When I broke my elbow during gymnastics at 8, I was ecstatic because it gave me an ‘out’ from gymnastics; I never told my parents how dreadful and nervous it made me. After that, I replaced gymnastics with dance, and the mysterious throbbing pain returned with the same types of stresses. After the dance school burned to the ground, I studied percussion all the way into high school, and performances gave me major Fiarrhea and awakened the vagina demon time and time again.

My parents, were like WTFFF?! Salty?? And again, understandbly: WTF?! I verbalized the pain on and off throughout my childhood and adolescence. When I was 11, my pediatrician diagnosed (aka picked a tongue depressor labeled with a disease name from a jar full of tongue depressors, labeled with disease names) me with a yeast infection, which I straight up did not have. Yeast infections are usually the result of a clear cause, like a side effect of taking antibiotics that strip the vag of its regular protective bacteria – that, or douching. I definitely was not douching! My pediatrician didn’t know what it was, what to do, and didn’t really seem to care. The fact that he hadn’t seen it before meant to him that it wasn’t real and was coming from a hyper and imaginative child – who you gonna believe? The cream was a numbing agent, so I spread it on my cooch and didn’t bother trying to describe the pain for a while.

At 15, my mom took me to a urologist — some dude. He said I probably had pelvic floor syndrome, where the door of my bladder, a little flap that holds in or passes urine from the bladder to the urethra, doesn’t work properly. He said the signal from my brain to the pelvic door is broken, which made sense to me. I was given the option of having a cystoscopy, a procedure where a tiny camera is inserted into the urethra of the anesthetized patient. This would be done to investigate the situation, but it would cause pain afterward and wasn’t a cure or even a treatment. It would only cause more pain and confirm what he was already pretty sure of. We decided not to go for it. I remember my mom saying that he was nice, and I thought he was a douche. I felt deficient and hopeless.

Fast-forward two years or so. I got a boyfriend, a really nice and wonderful boy who I told all this stuff to, and he was supportive and receptive. We were on the beach in June, so the water was cold. I ran and jumped into the ocean, and instantly all my muscles locked up and throbbed in pain, and I ran out. At my towel, I laid my hand flat over the top part of it, the mons pubis, or pubic mound, or what you see when a lady takes off her underpants lol. It pulsated through my fingers. I told my bf to lay his hand flat, and he felt it, too. He was scared that he could feel it throb, like something was inside pushing out. I had to go to the doctor because the pain wouldn’t go away. It happened so clearly from the moment I entered the water, the icy cold paralyzed me, and even out of the water, I couldn’t relax my muscles. The doctor, my small town’s general practitioner, explained it was from having sex and/or a bacteria in the water – I’m still not really sure. I remember feeling very guilty for having sex, being made to feel guilty, like I was inducing this, even though it happened before I ever had sex. His voice to me was a teacher from Peanuts, and I nodded to his Womp womp womp as he made a line drawing of a penis going into a vagina on a piece of paper. I took the antibiotics prescription and a painkiller and left, following the regimen, which mitigated the pain.

Half a dozen sessions of antibiotics and my first semester of college later, my boyfriend and I were dating semi-long distance – an annoying bus ride’s distance, of which he was taking more often than I. It was February, the beginning of our second semester, and he came to visit me. After a weekend filled with sex that I wasn’t having regularly, I saw him off and took a shower. The pain was starting, and I tried to let the hot water relax me with no result. I had a flashback to when I was maybe 13, leaning against the shower wall trying to let the hot water soothe me. For how many years now has this been going on? I can’t remember not having this condition. For how long is it going to hurt this time? I couldn’t leave my bedroom or the couch with that kind of pain. I was going to miss class, have to go back home to see the doctor and get a prescription that wasn’t going to help me. Maybe I’d have to concede to the fact that I’d always had this mysterious pain and always would, as long as I lived…

I woke up in the tub, the water running over me. I didn’t know where I was or who I was or when it was. I stumbled around the dorm room before remembering what nudity and clothing was, and reality and society and the world Earth came rushing back to me. The pain, the pain, the pain! I called my parents, who drove an hour-and-a-half each way to pick me up and take me home on a Sunday night with no notice, for which I am infinitely thankful.

In the car I was moaning in pain, the pain would. not. stop. When we got home an hour-and-a-half later, I felt enormously relieved to be there and finally relaxed. My muscles finally released the tension, and the pain finally subsided. It was weird and not real, how my mind was able to click into comfort, physical ease after hours of suspended panic, paralysis. This correlation was, in fact, significant, a simple and palpable example of the singular oneness of mind and body. It was finally my time to understand these longstanding problems and at least try to help them.

First was the psychiatrist. At that point I had gone to a cognitive behavioral therapist for about a year maybe, and I was regularly experiencing physical symptoms of anxiety – beyond the PBS/IC. It turned out later that this guy was not the best and, in fact, a lil’ creepy – yikes. However, he prescribed what turned out to be an extremely helpful medicine for me, Cymbalta, which, extremely super-simply: helps balance Serotonin (mood hormone) and Norepinephrine (pain hormone). While this doc grossed me out a bit, he knows (and loves and abuses) his prescription drugs. This guy also told me the street value of my Xanax tablets – hey, thank you…

Then I saw a gynecologist who was patient as I listed my history of symptoms, truly listened when I said they were present before I had sex, since I was a young child. It was starting to come together — there was a man who really heard what I was saying and had a tangible response. I was hooked up with the urologist in my town — an amazing, incredible doctor whose own daughter has IC, a situation which will validate any diagnosis. He was wonderful to me, extremely gentle and understanding, and for the first time, I felt justly legitimized. His examination was thorough and distinguished different areas of weakness and pain. It was a little upsetting because it hurt and pointed out my deficiencies so clearly, but it was also pretty fascinating. This doctor saved my life, foreal.

I went to a physical therapist for a while, too, who specialized in PBS/IC – mostly older women, which always made me feel real sexy and connected to my femininity. I went to this woman for a while, and we did exercises to help me locate and the muscles, used a TENS unit to numb the pain (or something), and Kegels, Kegels, Kegels. This training helped, and I have also, twice now, gone through a procedure called Hydrodistention, where the bladder is filled with water to stretch out the bladder walls and involuntarily force relaxation on the muscles. While the catheter is still inserted in the urethra, they fill it with a “cocktail” of painkillers – ooh la la! Hey, might as well if you’re up there… I’ll probably have to do this every 3-5 years, as long as the treatment is still available. When/if I have more time and money, I’ll do physical therapy again. Medication is very helpful, and sex & dating is just as confusing and fruitless as most of my friends, so it’s cool I guess. If peace & happiness are not available, “normal” is a comforting second choice.

A huge problem in finding a diagnosis and treatment was that the medical community wasn’t equipped to give me one. However, what’s taken the medical community so long? I really think it’s because of sexism and relying on archaic social standards – it’s about listening. It felt like the 1920s, and because the problem was my vagina, it was just a mysterious tangle of lady tubes, and the cause was in my pretty little head. I mean I have reason to feel that way – I was blatantly treated that way. But that’s how our world is, and apparently, it’s changing for the better. Slowly, but yeah.

This is mad cheesy, but straight-up forealsies: KNOWLEDGE IS POWER. Having a name for my group of symptoms made my condition real, its title a pinhole of light in a sky of darkness. It was like a waxy layer was peeled off my irises, and I was a cogent being – mind & body became one. I felt no longer desperate and alone but relieved and hopeful. I came to understand physical and mental/emotional symptoms as indicators of a problem affecting one machine, one human ecosystem, and I’m still learning this perspective. I definitely aim to donate significant sums of money to IC research when I’m older and hopefully, richer, and I think bringing awareness to this specific diagnosis elevates the understanding of women’s issues, in general. Let’s talk about and touch our vag’s, y’all, and be sympathetic to each other as human beings. Yay, internet – you really can be used for good!

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I Was Misdiagnosed With a UTI Over And Over…

time to read: 9 min