How I Avoided Interstitial Cystitis in 2013

Back in 2013, I almost got misdiagnosed with interstitial cystitis from a regular UTI that doctors were failing to treat. But I was able to avoid getting "ic" and cured my UTI with some luck and some fight, before it could turn into "ic" status.

It started late one night when I had all the symptoms of a UTI after midnight. The urine started to become bloody, and that's when I knew the UTI was serious. My UTIs hit fast and hard, it's like I'm normal all day, then boom, raging UTI out of nowhere! Since it was so late, no doctor clinics were open, so I went to ER around 2am. The ER female doctor prescribed me 3 days of Macrobid 100mg. I told her, "That is not enough, that's too weak. I usually get a week's worth of Ciprofloxacin 500mg." She brushed it aside and said this was enough. I took it and it only made me feel 20% better as I predicted.

I went back to the same ER on the 4th day in tears, and told the ER doctor what was happening. She then gave me a week of Macrobid, but I told her it wasn't Macrobid that I needed. I told her that Macrobids never works for my UTIs. I told her adamantly that 1 week of Cipro was what always cured my previous UTIs. She didn't listen and said this would work. And of course, 1 week later, it did not, and I was now in serious pain!

I went back again to ER for the 3rd time, and this time, it was a male doctor. He used a dipstick test and told me that there were no nitrates, so therefore, he concluded that this was a negative sample and that I did not have a UTI. But for goodness' sake, the urine was blood red! Of course I was having a raging UTI! He gave me Tylonel 3 and referred me to a urologist because he was now suspecting it was not an infection and instead, labeling it as ic. He told me to take those for the pain. How useless, I was having a very obvious UTI, I didn't need Tylonel 3 for that! This guy absolutely had no clue. I threw away the Tylonel 3 on the way home.

The next morning, I rushed to a drop-in doctor clinic right when it opened. I should have done this a long time ago and not gone to the hospital! The hospital had nearly wasted 2 weeks of my time! I told the drop-in doctor that I had a UTI and firmly requested 7 days of Ciprofloxacin 500mg. I remember the shocked look on her face as she replied, "What? You want me to bring out the big guns? Those are used for surgeries." I felt sheer anxiety and panic well up in me, but if I showed panic, I am sure the doctor would label me as hysterical and not take me seriously. So instead, I used my best 'resting bitch face' to look calm, and said matter-of-factly, "This is what has always cured me. My doctor always gave these to me but he's on vacation right now." And yes, my family doctor was actually on vacation, which was why I was running around like a chicken with my head cut off for this UTI. Otherwise, he would easily have prescribed me the antibiotics from day one. Anyway, this female drop in doctor prescribed them reluctantly, but thank goodness she listened to me.

I ran to the pharmacy and immediately got it filled. It was the longest 20 minutes in my life waiting for the antibiotics at the pharmacy. Although I write this blog post 6 years later, I still remember my high anxiety and tears, sitting on the pharmacy bench doubled over in pain, while I waited for those antibiotics. I probably sound like a druggie while I type this. I took 1 cipro on the spot right away when the bottle was ready. The pharmacist was sympathetic and said it was really sad how I had to struggle to get the antibiotics through 4 visits of doctors. Within 3 days, my symptoms started to clear up. By day 5, I was 100% well again.

Had I not been my own advocate and try to find a doctor who could give me the right antibiotics, my UTI at that time could have gone on too long and become wrongly labeled as "interstitial cystitis". I was lucky that I found a doctor who was willing to listen to me. If she had refused me the antibiotics, I would have kept running to different drop-in doctors until one would prescribe me what I requested. Through my previous 8 urinary tract infections, that was how I was able to cure them all. If my family doctor was away, on vacation, or not on duty, I sometimes had to run to 2 or 3 drop-in doctors, in stabbing pain, before one would agree to prescribe me the 1 week of antibiotics. It was sad that I had to do this, but it was the only way I could get my cure.

If you get recurring urinary tract infections, there are several ways you can go about this when a doctor or ER refuses you antibiotics because they don't believe you or the dipstick or culture test came back negative. You can read my tips on my next post: What to Do when a Doctor Doesn't Believe You Have A UTI.