Getting to a diagnosis was a long process, and documenting it turned out not to be any shorter. Standard disclaimer: if you aren’t interested in differential diagnosis of the female urogenital system, or are squeamish to conversation about bodily functions and secretions – feel free to skip this post entirely. You can get a quick run-down on my medical history here, which will give you all the context you might desire. Part 1 of the saga documented here.
Like clockwork, two days after I finish the antibiotics I have an upswing in my symptoms. More lower abdominal/suprapubic (above your pubic area) pain, constantly feeling like I have to pee, slight discomfort with urination, cloudy urine, and (bonus!) clear discharge. I’m going to be honest: I’m starting to panic. This has been over a month of on and off vaginal funkiness. I am showering twice a day, but never using soap on my vulva (vaginas are self-cleaning machines, y’all), I’m abstaining from all oral sex, and vaginal sex isn’t exactly my favorite thing at this point either. I’m not wearing thongs or jeans, and I’ve tucked away all of my cute underwear, opting instead for basic cotton briefs to maximize airflow. I’m also changing my underwear twice a day, so I’m doing huge amounts of laundry. I get off the plane from Arizona, and I’m in VA visiting my family for Christmas. I haven’t seen my mom in months, and the very first thing we do once reunited is go to urgent care – no bonding quite like asking your mom to come with you so you can pee in a cup. I ask that doctor to give me a pelvic exam in addition to the urine culture I provide so that I can get a snapshot of what is happening in both my reproductive system and my urinary system at the same time. She notes that I have milky discharge and pain near my cervix during palpation (the very official medical term for poking). Despite the conversation I had with my partner and my presumed monogamous relationship, I agree to a Gonnorhea/Clamyhdia test (GC), and I ask her about the possibility of Pelvic Inflammatory Disease (PID). She says maybe, and gives me antibiotics just in case, and tells me that I can get the results of the urine culture GC test next week.
I didn’t think it was very likely that I had PID for two reasons: 1) I had been on a ton of antibiotics without extended relief, and 2) most people with PID get it after having an STI and I couldn’t figure out how I would have gotten an STI. But given that I hadn’t had an STI test in a few years, and a lot of my symptoms matched, I was starting to get a bad feeling about it. Although to be fair, I was having bad feelings about just about everything. Desperate, I googled “Symptoms of UTI but no infection”. There was one other thing that my google searching turned up: Interstitial Cystitis.
This led me down a rabbit hole of internet searching. The good thing: this diagnosis didn’t require an STI of unknown origin. The bad thing: there’s no cure for interstitial cystitis (IC)
IC seemed to fit all of my symptoms – I had pelvic pain, I had a never ending urge to urinate, even though when I did go I only let out a small amount, I had suprapubic pain (location of the bladder), and sometimes my symptoms were better or worse than others. I realized that I was going to need to see a urologist, and that it was likely going to have a relatively long wait, so in the mean time I made the lifestyle changes I read about. I decreased foods and drinks that are known bladder irritants including: caffeine, chocolate, and alcohol (You can imagine what a joy I was). The idea was sound, but the execution was questionable – it was the holidays and I was on vacation, so I can’t honestly say I was the best patient ever. But in spite of a definite decrease in the ingestion of three of my favorite things, I didn’t see any great changes in my symptoms, and in fact, couldn’t see any connection between my symptoms and my diet at all. I could feel awful even if I hadn’t had any alcohol or caffeine (luckily you need less of the latter after you have less of the former), and could feel relatively awesome even after a long night celebrating with friends.
When I finally got back to Atlanta and made an appointment with student health center (since I was no longer eligible to be on my parents’ insurance after the first of the year), I asked about IC and told them about my haphazard attempts at diet changes, hygiene habits, sex habits, lingerie choices, and my increase in antihistamines and anti-inflammatories (something else I read online). After getting a sympathetic, “bless your heart,” the doctor told me that an IC diagnosis was a diagnosis of exclusion and that a urologist would have to do further testing to rule other things out. I got no antibiotics (my GI tract was thrilled), but another urine culture and a referral for a urologist.