HKay66
05-17-2010, 04:00 PM
I was diagnosed with IC on April 24, 2009 and was in total misery at that
time and was so scared that is how the rest of my life would be - luckily,
I can say I am a lot better than that time over a year ago!!
No, I am not in remission, but mostly have my symptoms under control
and many days are pretty much pain free. The flares I do have are much
less intense than in the beginning and not 24/7.
I never experienced pain like I had when this whole IC nightmare began.
For me, having 4 children was a piece of cake compared to this.
I started Elmiron and the IC diet the next day after diagnosis. After about a month the pain eased a little bit and then I began a series of almost weekly bladder instillations (rescue instills, not DMSO) for 3+ months and sporadicly had instills through January. I also did physical therapy for about 2-3 months for pelvic floor disfunction. I also started continual use birth control in February, so I am to get a period
only every 3 mos. This helps period induced flares.
I can't say any one thing was what got me better, but the combination of
all the treatments. I also have a lot of people praying for me, which can only help too!
I still watch my diet very closely and haven't added back in my beloved coffee
except a daily sip of my husbands coffee. Unfortunately I do think diet is
very important and wouldn't be where I was if I hadn't been so strict on the
diet in the beginning.
For me, I think what caused my IC was sjogrens, an autoimmune condition
that attacks your own body. My urogyny thinks it is absolutely connected in my case, but isn't the case for all IC patients.
I take plaquenil for my sjogrens and hope somehow that can also help the attack of my bladder.
I just want to say things can get better for any of you that are in the spot
I was in this time last year!!! This site is so wonderful and has helped me
learning about this disease and is so supportive... I am thankful for the many who took the time to answer all my posts/questions, especially in the beginning scary months!!
Hoping for good days ahead for all!!!
time and was so scared that is how the rest of my life would be - luckily,
I can say I am a lot better than that time over a year ago!!
No, I am not in remission, but mostly have my symptoms under control
and many days are pretty much pain free. The flares I do have are much
less intense than in the beginning and not 24/7.
I never experienced pain like I had when this whole IC nightmare began.
For me, having 4 children was a piece of cake compared to this.
I started Elmiron and the IC diet the next day after diagnosis. After about a month the pain eased a little bit and then I began a series of almost weekly bladder instillations (rescue instills, not DMSO) for 3+ months and sporadicly had instills through January. I also did physical therapy for about 2-3 months for pelvic floor disfunction. I also started continual use birth control in February, so I am to get a period
only every 3 mos. This helps period induced flares.
I can't say any one thing was what got me better, but the combination of
all the treatments. I also have a lot of people praying for me, which can only help too!
I still watch my diet very closely and haven't added back in my beloved coffee
except a daily sip of my husbands coffee. Unfortunately I do think diet is
very important and wouldn't be where I was if I hadn't been so strict on the
diet in the beginning.
For me, I think what caused my IC was sjogrens, an autoimmune condition
that attacks your own body. My urogyny thinks it is absolutely connected in my case, but isn't the case for all IC patients.
I take plaquenil for my sjogrens and hope somehow that can also help the attack of my bladder.
I just want to say things can get better for any of you that are in the spot
I was in this time last year!!! This site is so wonderful and has helped me
learning about this disease and is so supportive... I am thankful for the many who took the time to answer all my posts/questions, especially in the beginning scary months!!
Hoping for good days ahead for all!!!