lizzyrae77
07-08-2007, 10:14 PM
Hello everyone,
I was diagnosed with IC in December 2005. I had gone through years of pelvic pain starting when I was 16. I was told I had overactive ovaries and thought the pain was something I had to deal with. I did this for quite a few years, trying to make it through high school and then college. While in college the pain became worse and I decided to finally do something about it. At first I was diagnosed with kidney stones and had my first cysto in April 2000. All the urologist found was "sludge" (still not sure what it was) and sent me on my way. Three weeks later I end up in surgery with appendictis. Since the surgeries were so close together, they decided to do an exploratory surgery, not finding anything else but leaving me in more pain then before and a huge incision. I thought this was just something I had to deal with again and tried to go on with life as usual. By this time I had finished college and started working. When the pain was getting worse again, my PCP decided to send me to a gynecologist. This led to my first lap and diagonsis of endo in 2001. So I was told that the surgery took care of everything and I should be fine for there on out. Well that lasted less then a month. Then it was another round of possible kidney stones and another cysto with only "sludge" again. At this point I started looking for a specialist. I live in a rural area so all my options meant traveling a ways. I was quite fortunate and found a wonderful doctor and only have to travel 2 hours. I had my second lap and started with pain management treatments. But then about 3 years ago, I kept thinking I had an UTI. Went to my primary and all my cultures always came up negative. When I went back to my gyn specialist and told him what was going on he told me he thought I may have IC. At this point I was devasted thinking, great another disease to deal with. I had the potassium test done a couple of weeks later which confirmed the diagnosis. So I started on the diet, eliminating my life-saving caffeine and so many other things, started taking elmiron and learned to self-cath for instillations of lidocaine and heparin.
I did well for quite a while, but recently had a few rounds of bad flares. At this point I am just frustrated because I know these are probably self-inflicted. I work the midnight shift at a very stressful job and have trouble sleeping during the days. I usually don't have problems with frequency, but my body can't adjust to the fact that daytime is supposed to be my nighttime and I don't need to be in the bathroom every hour. I also have got stuck working way too much overtime and have exhausted myself. And I have had to have a few mochas to keep me awake. So yes my flares are self inflicted but didn't know what else to do.
I dealt with this all very well and have a good support system. I'm 29 years old and single but have a great mother who will still come and take care of me!! But still no one seems to understand what it is like to deal with a flare. Last night I sat at work almost in tears and my co-workers just stare at me. I spent a lot of time reading other people's post and thought I have finally found others that understand.
Right now I am just hoping this flare ends soon. I am doing instillations 3 times a week now and taking everytime I eat anything. Still taking the Elmiron too, it did seem to help to start out with but not sure anymore.
Thanks for giving a place for me to tell my story and find people that understand!!!!!!
I was diagnosed with IC in December 2005. I had gone through years of pelvic pain starting when I was 16. I was told I had overactive ovaries and thought the pain was something I had to deal with. I did this for quite a few years, trying to make it through high school and then college. While in college the pain became worse and I decided to finally do something about it. At first I was diagnosed with kidney stones and had my first cysto in April 2000. All the urologist found was "sludge" (still not sure what it was) and sent me on my way. Three weeks later I end up in surgery with appendictis. Since the surgeries were so close together, they decided to do an exploratory surgery, not finding anything else but leaving me in more pain then before and a huge incision. I thought this was just something I had to deal with again and tried to go on with life as usual. By this time I had finished college and started working. When the pain was getting worse again, my PCP decided to send me to a gynecologist. This led to my first lap and diagonsis of endo in 2001. So I was told that the surgery took care of everything and I should be fine for there on out. Well that lasted less then a month. Then it was another round of possible kidney stones and another cysto with only "sludge" again. At this point I started looking for a specialist. I live in a rural area so all my options meant traveling a ways. I was quite fortunate and found a wonderful doctor and only have to travel 2 hours. I had my second lap and started with pain management treatments. But then about 3 years ago, I kept thinking I had an UTI. Went to my primary and all my cultures always came up negative. When I went back to my gyn specialist and told him what was going on he told me he thought I may have IC. At this point I was devasted thinking, great another disease to deal with. I had the potassium test done a couple of weeks later which confirmed the diagnosis. So I started on the diet, eliminating my life-saving caffeine and so many other things, started taking elmiron and learned to self-cath for instillations of lidocaine and heparin.
I did well for quite a while, but recently had a few rounds of bad flares. At this point I am just frustrated because I know these are probably self-inflicted. I work the midnight shift at a very stressful job and have trouble sleeping during the days. I usually don't have problems with frequency, but my body can't adjust to the fact that daytime is supposed to be my nighttime and I don't need to be in the bathroom every hour. I also have got stuck working way too much overtime and have exhausted myself. And I have had to have a few mochas to keep me awake. So yes my flares are self inflicted but didn't know what else to do.
I dealt with this all very well and have a good support system. I'm 29 years old and single but have a great mother who will still come and take care of me!! But still no one seems to understand what it is like to deal with a flare. Last night I sat at work almost in tears and my co-workers just stare at me. I spent a lot of time reading other people's post and thought I have finally found others that understand.
Right now I am just hoping this flare ends soon. I am doing instillations 3 times a week now and taking everytime I eat anything. Still taking the Elmiron too, it did seem to help to start out with but not sure anymore.
Thanks for giving a place for me to tell my story and find people that understand!!!!!!