jolisey
05-07-2009, 06:28 AM
I'm so scared/discouraged and need to vent, and ask questions ... please bear with me:
I've had symptoms for over 3 yrs, but was just diagnosed and put on Elmiron, last July (08). It seemed to be a miracle drug for me, and I was feeling SO good that hubby and I were starting to get "intimate" again, and recently I thought I'd try a bit of iced coffee ..... mistake!!!
I'm now in a bad flare that doesn't want to go away, and am so discouraged. I'm kicking myself for trying the coffee, and really second guessing whether or not this is really IC. My urologist did a visual exam on me, and diagnosed me mostly based on symptoms. I tend to believe that it's IC because the Elmiron worked so dramatically (it wouldn't have worked if it wasn't IC, right??) I have so many questions.....
Before I started the Elmiron, I was just going to my family doctor, who would prescribe antibiotics when I got a really bad flare. Cipro usually worked for me, but not always. I seemed to be getting worse and worse a bit at a time, and this is what scares me to death right now.
Right now, I'm on Cipro again (and don't seem to be getting any better ... possibly even worse), and take Pyridium every 6 hours (can anyone tell me how long you can safely keep taking pyridium?? I can't seem to find that info anywhere...). I'm thinking that I need to talk to my urologist again, but discovered, when I called this morning, that I need to get another referral to see him, since I haven't seen him in more than 6 months ... ugh. That could take a long time. It's a bit of a pain in the neck to even get there, as we're more than 3 hrs north of his clinic.
3 summers ago, I had a "flare" (or infection or ....???) that lasted over 3 months; I was in so much pain, I thought I was going to go crazy. I contemplated begging any doctor who would listen, to remove my bladder. The urologist I was seeing at the time, was totally no help, and I felt so hopeless. I'm terrified of going back to that place again now.
Lastly, I really just need some answers about flares, since I'm really new to all of this, and am still not %100 convinced that all this pain I'm feeling is IC related at all. I have pain and pressure in my urethra area .. feeling like something is pushing down and out all the time. I have a burning around my urethral (vaginal?) opening - maybe a yeast infection from the Cipro?. I have "cramps" in my groin area, where you'd get period cramps, and a sore lower back. I have a really bloated belly, and feel like I'm constipated all the time (even though I'm not ... I have IBS, too). I seem to have quite a small bladder capacity, and when it gets bad, I need to pee every hour or so, even at night. Are these "normal" IC symptoms or should I be seeing a doctor to explore for something else as well?? Is it "normal" for flares to come on from drinking a coffee, or doing more walking than usual? Is it "normal" for flares to last months and months and progressively seem to get worse?? Can you still get such bad flares while on Elmiron, and when it seemed to be working so well? Does this mean that the Elmiron is no longer working for me, or will it take 3+ more months now, to start working again?? Some of you have answered some of these questions in a previous thread (thank-you!), but I'm still not sure that there isn't something else going on, too.
Sorry this is so long!! I have no one else that I can ask about this, and most doctors seem clueless. Thanks for listening ....
Wendy-Lee
I've had symptoms for over 3 yrs, but was just diagnosed and put on Elmiron, last July (08). It seemed to be a miracle drug for me, and I was feeling SO good that hubby and I were starting to get "intimate" again, and recently I thought I'd try a bit of iced coffee ..... mistake!!!
I'm now in a bad flare that doesn't want to go away, and am so discouraged. I'm kicking myself for trying the coffee, and really second guessing whether or not this is really IC. My urologist did a visual exam on me, and diagnosed me mostly based on symptoms. I tend to believe that it's IC because the Elmiron worked so dramatically (it wouldn't have worked if it wasn't IC, right??) I have so many questions.....
Before I started the Elmiron, I was just going to my family doctor, who would prescribe antibiotics when I got a really bad flare. Cipro usually worked for me, but not always. I seemed to be getting worse and worse a bit at a time, and this is what scares me to death right now.
Right now, I'm on Cipro again (and don't seem to be getting any better ... possibly even worse), and take Pyridium every 6 hours (can anyone tell me how long you can safely keep taking pyridium?? I can't seem to find that info anywhere...). I'm thinking that I need to talk to my urologist again, but discovered, when I called this morning, that I need to get another referral to see him, since I haven't seen him in more than 6 months ... ugh. That could take a long time. It's a bit of a pain in the neck to even get there, as we're more than 3 hrs north of his clinic.
3 summers ago, I had a "flare" (or infection or ....???) that lasted over 3 months; I was in so much pain, I thought I was going to go crazy. I contemplated begging any doctor who would listen, to remove my bladder. The urologist I was seeing at the time, was totally no help, and I felt so hopeless. I'm terrified of going back to that place again now.
Lastly, I really just need some answers about flares, since I'm really new to all of this, and am still not %100 convinced that all this pain I'm feeling is IC related at all. I have pain and pressure in my urethra area .. feeling like something is pushing down and out all the time. I have a burning around my urethral (vaginal?) opening - maybe a yeast infection from the Cipro?. I have "cramps" in my groin area, where you'd get period cramps, and a sore lower back. I have a really bloated belly, and feel like I'm constipated all the time (even though I'm not ... I have IBS, too). I seem to have quite a small bladder capacity, and when it gets bad, I need to pee every hour or so, even at night. Are these "normal" IC symptoms or should I be seeing a doctor to explore for something else as well?? Is it "normal" for flares to come on from drinking a coffee, or doing more walking than usual? Is it "normal" for flares to last months and months and progressively seem to get worse?? Can you still get such bad flares while on Elmiron, and when it seemed to be working so well? Does this mean that the Elmiron is no longer working for me, or will it take 3+ more months now, to start working again?? Some of you have answered some of these questions in a previous thread (thank-you!), but I'm still not sure that there isn't something else going on, too.
Sorry this is so long!! I have no one else that I can ask about this, and most doctors seem clueless. Thanks for listening ....
Wendy-Lee