This group is dedicated support those with interstitial cystitis (IC) and their loved ones with IC.
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An anonymous caregiver said...
almost 2 years ago
I'm just flaring so badly, and have for a long, long time now that I pretty much missed out on my entire summer. I have fell so far behind in just taking care of things around my home that used to be simple for me just taking care of me only. I used to take care of family when I healthy, and was a full time working Mom and had a business of my own back then. I know I will never be the same again! It has gotten a lot worse since I went through menopause. And I'm also effected all through the entire area of my bladder, and my urethra in which th e pain is comparabe to that of stage 4 bladder cancer in some like me, but with this horrible disease, everyone is different. I've seen a nurse that had it but was in remission due to the treatments I'm going through right now. But she no longer is in remission and had no choice but to retire early due to Interstitial Cystitis. We never do have easy decisions to make either! I just found out one of my IC Sister's had her bladder removed and now has what's called an "Indiana Pouch" inserted where her bladder used to be, with a stoma coming out of her belly. One good thing she has said, no more pain from IC and she has some of her life back! I don't know how or where they do this in my area, but I need to give her call like I said I would do when I got back from the grocery store, which is such a big feat for me! Everything that I have to do is a huge challenge and some things I am just way overwhelmed with right now and just can't catch up, and can't seem to catch a break from this debilitating disease that just wipes me out so badly that I can't even focus. I hope I have made as much sense here that everything is clear and can be understood well enough, as the pain is that bad! If there's anyone else out there that also has this as well, please feel free to open up and share your story! After all, it's only human anatomy and I too have suffered silently for so long as well! WE need to spread the word to get the help we need for either a cure or better ways to control the pain and there are a lot of people out there that suffer, but like I had said, everyone is different, and some the same as well! I sure hope this starts something people have been too embarrassed to talk about. One good thing here, you can be anonymous as well. I leave myself that as well for now until I see more come upfront and say what's on their mind as well. Bless all of you that are suffering both in bladders and you minds and body's due to this horrible disease in which other auto immune diseases are also linked with it as well.