UTIs and IC: Interstitial Cystitis Could be Bacterial/Pathogenic Infection

I'm reading stories on the Inspire forum of how a few Interstitial Cystitis patients got IV antibiotics for other reasons (for other infections, or for after birth), and their IC diminished or entirely went away after the antibiotics! This is leading me to think that there are IC cases that stem from bacterial causes or from some type of infection. It started to make me wonder if there is a link between bacterial infection and Interstitial Cystitis. Could it have been a UTI that didn't get enough antibiotics and left behind low lying pathogens? Or got the wrong antibiotics and then the UTI continues to remain? Or too much antibiotics and the pathogen learned to become antibiotic resistant to some or many types of antibiotics -- so then you're left with a UTI that is hard to treat? Then I read a post about a person saying that those diagnosed with IC but were found with infections later via Aperiomics or MicroGenDX, isn't considered true IC.

Also, this article Antibiotic Therapy for Interstitial Cystitis? is very interesting on how many patients were initially diagnosed with a bacterial cystitis aka urinary tract infection (although the culture results were often indeterminate). According to this article, many researchers and clinicians have entertained the belief that women with interstitial cystitis have an unusual urinary tract infection that may respond to antimicrobial therapy. It has been hypothesized that the inflammation and symptoms may be caused by a low-count bacteruria (a colony count below the level usually established by the microbiology laboratory), a difficult to culture bacteria, or perhaps even some other, yet to be discovered, cryptic microorganism.

I thought back to my previous UTIs that almost didn't get cured and how I got them treated....

I get urinary tract infections (UTI) about once a year, and sometimes with 3 year breaks in between. Why I seem to be prone to getting them - I don't exactly know why. The odd thing about this is that sometimes my UTI would show up as an infection, but most times it would not in the urine culture tests. I don't know if this was because my pathogen was too low a count to make it in the standard urine culture tests, or if I diluted my urine with too much water because I drank a lot to lower the burning (yes, that can alter results), or if the pathogen causing my problems was not considered a "pathogen" in the labs. For example, staph epidermidis (the harmless bacteria on your skin) is considered a contaminant and not an infection in labs, but it could be a pathogen that bothers your bladder and makes your bladder go into UTI mode.

When I think back, my UTIs had a few chances in previous years that could have really gone wrong. It could have led to chronic Cystitis, which then could have then been misdiagnosed as Interstitial Cystitis (IC). That's why I believe that there is a huge link between bacterial infections and IC, if your IC started from a UTI.

The Hospital that refused me antibiotics:

For example, in 2013, I was urinating blood one time. I went to ER and they checked my urine sample. They said it showed up as no infection and refused to give me antibiotics even though there was red bloody urine in the cup and I was obviously in severe pain! I begged them to give me antibiotics but they refused and sent me home with Tylonel. Oh my god, are you kidding me? Those were the most useless hospital doctors I had ever come across. I peed every 5 minutes all night in excruciating pain, waiting for the drop-in doctor clinic to open at 8am. I went to a drop-in doctor in the morning and asked for Ciprofloxacin 500mg, and my UTI was resolved with 5 - 7 days of it. Had I taken the hospital's answer of not giving me antibiotics, my UTI could have kept going and then I would have had some type of chronic cystitis or been labeled with IC, who knows? I found it strange that no "pathogen" showed up in their urine test when it was so obvious I had blood in the cup and I had the symptoms of a UTI. A week of Cipro cured my "non-infection" UTI. For some reason, ciprofloxacin always cured my urinary tract infections. I am aware it has a black box warning, and I am aware it has given patients dangerous reactions. It so far always worked for me just fine and I didn't get any bad reactions to it from using it over the last 16 years. Unfortunately, it just seems to be the antibiotic that works on my particular urinary tract infections.

The Drop-In ER who pushed on the wrong antibiotics:

Another time, I got a UTI and a drop-in ER doctor prescribed me Macrobid. I knew that wouldn't work and told her that wasn't the one that would resolve my UTI. She refused to listen and told me to take it. I took a week of it anyway and my UTI wasn't resolving at all. I went to another drop-in doctor and asked for a week of Cipro, got it, and cured my UTI as usual. If I didn't run off to another doctor, again, I could have been left with a UTI that could have festered into something else.

The Drop-In who gave too little antibiotics:

Then another time, I got a UTI, and a drop-in doctor gave me 3 days of Cipro. I told him that wouldn't fix my UTI, but he wouldn't listen, he said 3 days was enough. I went to another drop-in doctor and told him I had a UTI and I needed at least 7 days of Cipro. He listened and prescribed them to me. I now had 10 days on me from the 1st doctor and the 2nd doctor. I took the 7 days, healed, and the extra 3 days of cipro I stashed away in case of an emergency if I were to travel.

So what I'm trying to say is, only you know your body best. When you get a UTI, get the antibiotics that you know work for your specific problem (this if if you already know which antibiotics work for your re-curring frequent UTIs). Even if your urine doesn't culture any infection, but you know that it's a UTI, go to another doctor if you are refused antibiotics by the first doctor you visit. You need to get the right amount of antibiotics that can fix your urinary tract infection. Because if you let it fester too long, it can end up damaging and hurting your bladder more or lead to a kidney infection or even worse, sepsis. And if your UTI is strange like mine, showing no infection but still cures from antibiotics, convince your doctor to give you the antibiotics to fix it. It's stressful and scary running around to drop-in doctors all the time to get my antibiotics to fix my problem every year, so that's why it's best if you get a family doctor who knows your story and your protocol, to prescribe you the antibiotics you need, and ask him/her for an extra prescription on peper to hold onto so that you can redeem it at any pharmacy the moment you get your next UTI. This way, you don't have to book to wait for an appointment while you're peeing in pain. You can redeem it right away.