My heart goes out to those of you who are long-suffering with IC and those who are newly diagnosed. I'm 33 and a relative newcomer to IC as my symptoms started in March. I am still struggling with the cause of this pain. Was it Candida? Was it medication? Am I just unlucky? I do believe that it has something to do with the fact that over the past two years I've been on a ton of Antibiotics , pain medications, NSAIDs, and anti-seizure meds for a nerve condition (Trigeminal Neuralgia) that was finally resolved by surgery (which I was catherized for) in December.
I've always had what I thought was a "small bladder" (even had a urethra dilation when I was three for frequent UTIs), but in March I doubled over one evening with a stabbing pain in my bladder area. It would come and go and over the next few weeks I had an increasing sense of needing to urinate quite often. I was trying to get pregnant, so was hopeful it was an early sign. As you can likely tell since I'm posting here. The symptoms were not related to a pregnancy.
After about 10 - 12 days I thought it was a UTI and called my doctor for an appointment. She put me on Antibiotics before seeing any test results. Of course they didn't work and cultures came back clear from infection. They did show a high WBC count, so the doc assumed the situation was just on the tail end (even though I was in a ton of pain that just seemed to keep getting worse). After two rounds of different Antibiotics with no results, the second culture report (at 30 days) showed Candida in my bladder/urine. I can only assume was introduced by the catheter and multiplied due to my high- Antibiotic use over the past year. Thinking we had the answer, I was referred to an Infectious Disease Specialist for two months of Diflucan. Don't even get me started on all the natural remedies I tried.
Over the following weeks and months, the pain and pressure in my bladder continued and my frequency was up to 30+ times per day. I was obsessed with keeping intake/output journals to prove to my doctors that this wasn't normal. Same old story ... even with my urologist at first ... They kept wanting to give me more antibiotics. They even tried Flomax (which is typically for men) to "relax" my pelvic floor muscles.
During this time I was going for test after test ... I've had two ultrasounds, one CT-scan, one MRI, urodynamic testing, two cystoscopes, and finally this week a biopsy confirming inflammation without infection.
I tried the IC diet, I gave up caffeine, I gave up soda, and I tried a chiropractor ... none of that seemed to help. I've been doing a TON of research on supplements and I can only say what has been helping me. I have nothing to back it up other than the fact that within a few days I was starting to feel a little better each day. Here is what I've been taking and I'd love to hear other's thoughts on whether or not anyone has tried similar.
- Bladder Irritation Tabs by Hyland's (homeopathic)
generally pop 2 or 3 3xs throughout the day
- Glucosamine, Chondroitin & MSM Complex by Whole Foods
3 in am, 3 at lunch, 3 at dinner
- CystoProtek by Alaven (especially for IC)
2 in am, 2 at lunch (on bad days), 2 at dinner
If I want a cup of coffee, I take two Prelief by AkPharma just before drinking the coffee.
I use the heating pad in the evenings ... I believe that the heat from the pad helps stimulate blood-flow in the area and speed the healing.
I hope this helps someone ... Although I'm still feeling "odd" in that region, I am confident that each day has seemed to get better within the past few weeks. I pray every day that this is a healing and not just a remission. Good luck to you all ... you're in my prayers too!