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Hi, I've posted a few times but haven't yet introduced myself so I thought today would be a good day to do so since I just had my first treatment and still have so many questions. I'm 43, live in Arizona, and still don't know what caused my IC.
I never had a history of any pelvic pain, UTI's, or any surgery before being diagnosed with IC. Nothing. This hit me literally out of the blue. One night I was sitting at a baseball game, enjoying the weather and a few beers, not even thinking about the bathroom, and the next night I was miserable, peeing every 15 minutes. I had one bladder infection when I was about 18 and remembered that feeling of having to go often so I assumed that was what I had again. I went to see the doctor and she said there was blood in my urine and it definitely looked like I had an infection so she gave me some antibiotics and sent me on my way. They called after the culture came back to say that I definitely tested positive for e.coli but my symptoms weren't any better after a week on the ab's. She then switched me to cipro for another week and still no change except now the cultures all came up clear for infection.
At that point I was referred to a urologist who did an ultrasound of my kidneys, told me "nothing's wrong," gave me some OAB meds and sent me on my way, telling me to return in 6 weeks. Not acceptable. I then did some research, found a fantastic urologist and made an appointment with her. In the meantime, I visited my gyno to have internal ultrasounds done, along with all the tests for BV, STD's, etc. All clear there, too. The new uro suspected that I might have a kidney stone stuck near the bladder that was causing irritation so I had a CT scan to check. There were two little calcifications that showed up and I was clinging to the idea that those could be removed and I could get on with my life. Uro ordered another CT, this time with contrast and without a doubt then everything came back clear. No stones, no obstructions, and no other abnormalities.
I was diagnosed by exclusion and by my symptoms of pressure and extreme frequency. She said that it's unusual to have symptoms just pop up like this but that it does sometime happen. There is never any time that I feel like my bladder isn't bursting and it's been like this night and day for over 2 months now. OAB meds haven't helped and I'm on Amitryptiline to sleep but that hasn't helped with frequency yet either. I started taking Elmiron orally on Tuesday and today was the first of 6 Elmiron rescue instillations. I actually feel a little worse after that because I have burning where I didn't before but I guess that happens for a day or two afterwards.
I've been sticking to the IC diet for 7 weeks and can't tell any difference at all. I've even tried eating tomato a couple of times here and there to see if anything happens and it doesn't. I'm staying off the coffee, sodas, juice, etc. but really, food doesn't seem to be a trigger for me. This frequency has me practically housebound at the moment and even just sitting here watching TV is uncomfortable. I am ALWAYS aware of my bladder and how miserable it is making me. I'm happy to finally have some hope in the form of treatment but I'm just so tired and I cry a lot thinking about how much my life has changed overnight and wondering if I'll ever feel better.
Anyway, that's my IC story so far. I've been reading a lot on this board and the ICN site but I know I have a lot more to learn. It just makes it so hard to keep hearing, "Well, everyone's different. What works for someone doesn't for someone else." I know that's true but it really sucks when you're just trying to feel better and want to fix it but every time you think something MIGHT help, it doesn't.
I never had a history of any pelvic pain, UTI's, or any surgery before being diagnosed with IC. Nothing. This hit me literally out of the blue. One night I was sitting at a baseball game, enjoying the weather and a few beers, not even thinking about the bathroom, and the next night I was miserable, peeing every 15 minutes. I had one bladder infection when I was about 18 and remembered that feeling of having to go often so I assumed that was what I had again. I went to see the doctor and she said there was blood in my urine and it definitely looked like I had an infection so she gave me some antibiotics and sent me on my way. They called after the culture came back to say that I definitely tested positive for e.coli but my symptoms weren't any better after a week on the ab's. She then switched me to cipro for another week and still no change except now the cultures all came up clear for infection.
At that point I was referred to a urologist who did an ultrasound of my kidneys, told me "nothing's wrong," gave me some OAB meds and sent me on my way, telling me to return in 6 weeks. Not acceptable. I then did some research, found a fantastic urologist and made an appointment with her. In the meantime, I visited my gyno to have internal ultrasounds done, along with all the tests for BV, STD's, etc. All clear there, too. The new uro suspected that I might have a kidney stone stuck near the bladder that was causing irritation so I had a CT scan to check. There were two little calcifications that showed up and I was clinging to the idea that those could be removed and I could get on with my life. Uro ordered another CT, this time with contrast and without a doubt then everything came back clear. No stones, no obstructions, and no other abnormalities.
I was diagnosed by exclusion and by my symptoms of pressure and extreme frequency. She said that it's unusual to have symptoms just pop up like this but that it does sometime happen. There is never any time that I feel like my bladder isn't bursting and it's been like this night and day for over 2 months now. OAB meds haven't helped and I'm on Amitryptiline to sleep but that hasn't helped with frequency yet either. I started taking Elmiron orally on Tuesday and today was the first of 6 Elmiron rescue instillations. I actually feel a little worse after that because I have burning where I didn't before but I guess that happens for a day or two afterwards.
I've been sticking to the IC diet for 7 weeks and can't tell any difference at all. I've even tried eating tomato a couple of times here and there to see if anything happens and it doesn't. I'm staying off the coffee, sodas, juice, etc. but really, food doesn't seem to be a trigger for me. This frequency has me practically housebound at the moment and even just sitting here watching TV is uncomfortable. I am ALWAYS aware of my bladder and how miserable it is making me. I'm happy to finally have some hope in the form of treatment but I'm just so tired and I cry a lot thinking about how much my life has changed overnight and wondering if I'll ever feel better.
Anyway, that's my IC story so far. I've been reading a lot on this board and the ICN site but I know I have a lot more to learn. It just makes it so hard to keep hearing, "Well, everyone's different. What works for someone doesn't for someone else." I know that's true but it really sucks when you're just trying to feel better and want to fix it but every time you think something MIGHT help, it doesn't.
03/11 
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