redotter95 said:Can any of you who've been diagnosed with IC let me know which doctor actually gave you the diagnosis? Like, who's the go-to specialist for this stuff here in the States? Feel free to just shoot me a DM if that's easier.
Honey, you aren't alone in this world. I might be the oldest one here; I've had an IC diagnosis since 1992. I was 35 then, and now I'm 59. Back then, my urologist, Dr. Gilja at Holy Spirit, told me after my biopsy 🙏that you'll live with it, but it won't kill you—just drink some teas and Sinersul. I only had the biopsy because they were stumped after all my urine tests, bladder ultrasounds, and urodynamics came back normal. A couple of years ago, I went back to see Dr. Gilja—who is a total scientist in this field—because my symptoms, pain, and frequency were getting worse. He basically told me there’s no cure, and whoever invents one will win a Nobel Prize. All these years, I've mostly been on my own. Since 1999, I've been seeing a homeopath who gives me injections through the abdomen, just above the pubic bone. It’s helped my life a lot, honestly; it even allowed me to retire early. I kept looking for answers, though, following what they do in the US, and found Cista Q complex. I've been taking it since 2012, and it really helped me stay in a better place for longer stretches.
I order my stuff from the US, Canada, and Mexico City. The latest thing I read about is sodium pentosan polysulfate (Elmiron), which is what they use to treat IC patients in America. I actually managed to get some via a private prescription, but I got the 25 mg dose instead of the 100 mg one. I haven't started it yet. Right now, I'm sticking to my homeopath's injections and Cista Q. I never used to have food allergies, but over the last two years, I've noticed tomatoes, onions, and coffee really irritate my bladder and make it hard to hold it. It’s pretty quiet at night, though. For the pain, I use ibuprofen, and I've been on an antihistamine since yesterday, along with my homeopath visits and Cista Q. I picked up the pentosan through a pharmacy online. I'm saving that for when I finish my current round with the homeopath. Unfortunately, our medical system doesn't really tackle this, and don't even get me started on general practitioners—they barely even know what it is. I just deal with the ups and downs. I had a bladder CT a couple of years ago and everything looked perfect. No stones or anything else. I won't ramble too much, but if any other patients need help with something I might know, feel free to call me at 555-0198 or just reach out here. Bye!