LunaAurora
03-26-2004, 04:14 AM
Rachel,
I am so happy to hear that things went the way you had planned, maybe even better! I was also so amazed and delighted when i started to read about your story! You are such a ray of hope! Thank you for everything you have shared with everyone here, i know that your story will help others! I have some questions for you as i have the same problem as you, isolated flares. The flare i am in now has lasted since October 2003. I have tired everything except for Botox and Interstim. Your story was a breath of fresh air for me as i really have wanted to try more inavasive procedures but was always timid as just my last two simple cyto/hydros are what have put me in this long term flare. The doctors are completly baffled as i have seen 7 in the last 6 months. The opposite happend to me in these last two surgery. The cytos/hydros are suppose to bring you out of a a flare, as i'm sure you know, not put you in one. Right now i am working with a pain specialist and have litterly tired over 35 different drugs in the last months with no hope. I am sick of taking medications that are doing nothing and would just like to be a somewhat normal 22 year old again. I would give anything to have my IC back to where is was before last October. I also had ulcers on my bladder when i was first diagnosed three years ago, but those have healed (i got to see pics last time of my bladder and now i just have scaring) but still this horrible flare. This is something i had never experienced before the last two hydros. I'm sorry this is so long, I'm sure you have the point, it's i am so desperate and so miserable. If you could please send me a Pm or e-mail me i would really appreciate it. I have a doc appt. with my pain doc on April 1st and a doc appt with a new urogynocologist on the 14th and would like to know more about your experience before i went in so that i would be better armed with information. I really would like to have the Interstim, but just to get me through this flare, i do not really what to get it implanted and everyone i have talked to in Wi here has not exactly heard of what your doctor was doing to help you. I think he is genius. If you do not wish to e-mail me i understand and we could talk over the message board, i just have some personal questions to ask that i would rather not post on the boards. Thanks for reading this Rachel, you have definaly given me so much hope! my e-mail is kmbohn@iqtechservices.com
Thanks again
Kate
I am so happy to hear that things went the way you had planned, maybe even better! I was also so amazed and delighted when i started to read about your story! You are such a ray of hope! Thank you for everything you have shared with everyone here, i know that your story will help others! I have some questions for you as i have the same problem as you, isolated flares. The flare i am in now has lasted since October 2003. I have tired everything except for Botox and Interstim. Your story was a breath of fresh air for me as i really have wanted to try more inavasive procedures but was always timid as just my last two simple cyto/hydros are what have put me in this long term flare. The doctors are completly baffled as i have seen 7 in the last 6 months. The opposite happend to me in these last two surgery. The cytos/hydros are suppose to bring you out of a a flare, as i'm sure you know, not put you in one. Right now i am working with a pain specialist and have litterly tired over 35 different drugs in the last months with no hope. I am sick of taking medications that are doing nothing and would just like to be a somewhat normal 22 year old again. I would give anything to have my IC back to where is was before last October. I also had ulcers on my bladder when i was first diagnosed three years ago, but those have healed (i got to see pics last time of my bladder and now i just have scaring) but still this horrible flare. This is something i had never experienced before the last two hydros. I'm sorry this is so long, I'm sure you have the point, it's i am so desperate and so miserable. If you could please send me a Pm or e-mail me i would really appreciate it. I have a doc appt. with my pain doc on April 1st and a doc appt with a new urogynocologist on the 14th and would like to know more about your experience before i went in so that i would be better armed with information. I really would like to have the Interstim, but just to get me through this flare, i do not really what to get it implanted and everyone i have talked to in Wi here has not exactly heard of what your doctor was doing to help you. I think he is genius. If you do not wish to e-mail me i understand and we could talk over the message board, i just have some personal questions to ask that i would rather not post on the boards. Thanks for reading this Rachel, you have definaly given me so much hope! my e-mail is kmbohn@iqtechservices.com
Thanks again
Kate