I've had IC for probably ten years, but I've only started managing it in the past one.
[Content Warning: This post contains descriptions of traumatic medical experiences.]
I suppose it all started when I was a teenager. My first real relationship with a boy. My first sex. Then almost immediately, my first urinary tract infection. Then, my second and third and fiftieth and thirty-thousand millionth. They never stopped, really. And sex was the worst trigger, but once the urinary tract infections (UTIs) started, they could be kicked off by caffeine, sugar, tight pants, or dehydration. I took precautions, I saw urologists, but no one seemed to be able to get a handle on why I was constantly in pain.
Several years into the chronic UTIs, I finally had the same health insurance long enough to find myself a urologist who was willing to do more for me than prescribe antibiotics. Let's call him horrorDoc. I've never given a pseudonym to a doctor yet, but this one came to me immediately, so I'm going with it. HorrorDoc said I might have an overactive bladder and decided to do a cystoscopy on me, which is a procedure that involves a sort-of catheter with a camera snaking up the urethra, filling the bladder with water and taking a look around. I was afraid, as I was already having symptoms and couldn't really conceive of the pain that having something scraping around in my already traumatized urethra would cause, but the doctor insisted, saying that it was best done when I felt worse, for maximum information. I caved.
I found out recently that this procedure is normally done while the patient is anesthetized, usually just locally, but sometimes generally. I was not. I was put into stirrups, had the scope inserted into my urethra without any painkillers, and then my bladder was inflated with water until I couldn't take it anymore. I couldn't help but scream and involuntarily jerk about, it was a visceral reaction to the pain, which was worse than any I'd felt before. I was crying and trying so hard to be a good patient, while the doctor alternately ignored me and admonished me to calm down. Then, the stirrups weren't locked properly and in my pain I'd knocked one of them down. When my leg fell, the doctor snapped at me to get it back up, so I tried to balance my foot in the unstable rest but ended up just holding my leg up while he finished rooting around in my bladder. The nurse holding my hand/holding me down was quietly shushing me, trying to calm me down by telling me it was almost over, he was almost done, I was doing a great job.
I remember he said there was some irritation. I saw my bladder on the screen and it was bright pink, with red splotches. I remember he said there were no ulcers or indicators of anything serious. I also remember that he was unabashedly condescending the whole time because I couldn't stop crying and shaking. The pain was searing. Years of fiery, acid urine hadn't prepared me for that cystoscopy without anesthesia. When I left that office, I never went back, and my relationship with doctors, especially male doctors who plan to go anywhere near my genitalia, has never been the same.
Since that procedure, I've seen two urologists and saw both only once each. I allowed neither to touch me beyond the most cursory of external exams. Finding excuses to avoid seeing a doctor more than once was easy, I didn't like him or her office was too far. Our insurance kept changing. Easy.
So, I'd been managing my symptoms instinctively, for the most part. If I partook in sexiness, I did the whole peeing, cleaning, hyper-hydrating treatment. If I felt a twinge, I immediately dropped my intake of anything but water and started taking cranberry pills. Sometimes this worked, and sometimes it didn't and I'd end up on antibiotics... again. There have been long periods of time during which I was constantly on antibiotics. My body hated it, but I hated being in pain more, so I kept taking the pills, hoping they would eventually work.
During this time, I'd passed one stone and I had one kidney infection, but somewhere along the way, my cultures started coming up clean half the time, when I would be having somebody-kill-me urethral pain. The doctors would puzzle, give me antibiotics anyway. The painkiller they prescribe specifically for UTI pain, pyridium, stopped working. One or two of the clinic doctors mentioned interstitial cystitis as a possible source of my problems, which they basically explained was bladder or urinary tract pain with no real cause and no cure. But, I wasn't interested in that diagnosis, since it came with a) no cure and, b) the recommendation to see a urologist for a cystoscopy to confirm. Instead, I convinced myself that I just had recurrent infections and if I could somehow break the cycle, I'd be all better.
Well, then I lucked out when I came down with the daily migraine adventure and my boyfriend hurt his back because our sex life dropped WAY down, as did my consumption of alcohol and caffeine, since both trigger my head immediately. This change in lifestyle led to me not having an "infection" for over a year, and then only once or twice.
Until the day when they came back. What can I say, I had a good weekend. There was sex, there was caffeine, and there was bike riding. Consequently there was a UTI. I had some old cipro that I took with no effect. My doctor prescribed macrobid, which also had no effect and then bactrim, which seemed to have no effect until I stopped taking the cranberry pills and was suddenly practically pain-free.
I had a real conundrum on my hands. I seemed to have a UTI that was super unresponsive to antibiotics, with no bacteria showing up in my cultures, and horrible pain with no discernible cause, except for possibly my cranberry pills. After three consecutive rounds of aggressive antibiotics, either I'd managed to contract the most powerful bacteria ever, or something else was going on. So, I jumped on the internet and did a little googling and... OH. IC.
This may not have been the first time I'd come across this diagnosis, but I was suddenly seeing it much differently. First, I hadn't had an infection or sustained pain in over a year, so if there ever was an infection cycle, it would be long broken and wouldn't be starting back up again like it never left. Second, the concept of incurable pain is no longer the worst thing that could ever happen to me. I've been having incurable head pain for years now, and I can say from experience, being in denial don't help a thing.
Now, let me tell you, even after breaking through those years of denial, I am still in no rush at all to have a doctor poking around in me to confirm my self-diagnosis. I decided to try to get my past records from horrorDoc, but his old contact information wasn't working. So, imagine my emotional turmoil when I googled him and the top result was an article from 2007, saying that he had had his medical license revoked and served some token jail time for falsifying patient records, lying to patients, and performing an unnecessary radiation-type surgery on one patient. This makes me feel angry, frightened, nauseous, and kind of numb. Both horrified and relieved. Further phone calls have resulted in the news that my records are "lost". And yes, that goes in quotes.
So, I continue to be undiagnosed, officially, but I maintain that this is IC, and my internist agrees, though unofficially. Cranberry pills causing pain seems to be a trademark, probably just for how much cranberry is pushed in the world of urology, but all acidic foods can be painful. Since diagnosing myself, I've changed my diet and behaviors only slightly, and it's made a huge difference. I've been successfully managing it myself for over a year now, just through diet and mindfulness, and I very rarely have flares anymore. I know not everyone is so lucky, but I'm very happy not to have to take medication for it, and to be able to continue avoiding the urologists.
Though, that prospect is slightly less scary now that I know horrorDoc is no longer practicing. Interesting.