View Full Version : diagnosed 4 days ago
09-13-2004, 01:41 AM
Hi my name is Laura. I was diagnosed with IC following cysto/distention last thursday. I was lucky I felt great after distention (for 3 days) now its back to normal. I got my period last night and I am having a flare up. Called in sick to work today and I am very depressed about that. I just wish I could feel like a normal 36yr old woman. I feel bad that I was happy when I was diagnosed. At least I'm not crazy right? The pics of my bladder were pretty bad (many ulcers, bleeding scarring) 5 years of GI docs telling me there was nothing wrong but IBS until I saw a new gyno who told me of this condition last month. Since then I can't help but be mad at GI docs and my primary (who has treated me 3 times for UTI in past year, never doing a culture) I think if these people were on the ball maybe I wouldn't have so much scar tissue. I now have reduced bladder capacity due to the scarring. My bladder holds 1/2 of what it should. I'm not having a good day, I'm just thinking of all I've missed due to this (daughters cheerleading, work, weekend family time.) I just hope the Elmiron works because the pain meds aren't. Thanks for listening...Laura
09-13-2004, 01:46 AM
I replied to one of your other posts in another thread, but just wanted to :welcome: you to the ICN again... I'm sorry you're having a difficult time right now. IC is a rough disease, but there are LOTS of treatments you can try, and most people find one or a combination that work for them. Most with IC go on to live completely normal lives! :)
Check out our Patient Handbook (http://www.ic-network.com/handbook) for information about treatment options and for lots of useful self-help tips, including the IC Diet. If you haven't already, I suggest you put yourself on that diet as soon as you can--- it can really help reduce symptoms in many patients. Basically, you're going to need to avoid acidic, carbonated, caffeinated, and spicy things (no soda, coffee, fruit juice, etc)... yep, it stinks, but it really does help. Check it out in the handbook.
09-13-2004, 02:45 AM
I think most of us felt some relief when finally diagnosed. I was fortunate in being diagnosed fairly quickly --- and that was almost thirty years ago.
Since you recently had a surgical procedure, I think it would be a good idea for you to be checked to be sure you don't have an infection --- not unusual after a bladder procedure.
Elmiron can take up to six months or more to be effective so you might want to consider other treatments in the meantime. Jen is correct in stating that there are many treatment options out there.
I have had diagnosed IC for almost thirty years now and if there's any one thing I like to share, it is that there is life with IC. It may take a while to find the best treatment options for you (we all seem to be different) and which foods and drinks you need to avoid, but most of us do get there --- and most of us feel good most of the time.
And remember that for every individual posting here that they are in pain, there are hundreds of ICers out there who are not posting because they feel good and don't need the support of the boards.
Sending warm healing thoughts,
09-13-2004, 05:12 AM
:welcome: Hi Laura and Welcome. I too have been just recently diagnosed with IC after 8 years of suffering and 5 Dr.s telling me that it is all in my head :rolleyes: It makes me so mad :cussing: with them that I would gladly go back to them with the intent of bodily harm. But they aren't worth going to jail for so I am writing all of them a letter instead.
Don't feel bad about being happy that you finally have an answer. I was so happy to finally know what was wrong with me that I started to cry. I was beginning to think it really was "All in my head" as those quacks had suggested already.
Well enough of my babbling about this. I just wanted you to know that I feel your pain and understand completely how you felt when you got your diagnosis. :grouphug:
09-14-2004, 08:12 AM
Thanks everyone, I'm feeling better today. I actually made it to work. I have the best boss he is so understanding. He actually went on the web yesterday to get info on IC. He really sympathized with me.He told me not worry about loosing my job. All of your advice yesterday really helped me, Im usually not such a downer. Im sorry your all sick too but I'm happy i'm not alone. I thank you all so much, I'll talk to you soon.
09-14-2004, 10:56 AM
Laura glad to hear that you feel a little better today. It is very frustrating to have IC and I was like you, relieved at the fact that I knew what the problem was finally but mad that it took many years and Dr.s later to find out what the problem was. That was so great of your boss to do research, jobs and boss's like that are hard to come by.
:welcome: Don't worry about sharing with us on your down days. it is good to get it out --- we have all done it. That's part of what we're all here for.
09-14-2004, 04:22 PM
Glad to hear you're feeling better, Laura. I'm sorry you have IC, but don't despair! Donna's right, lots of people have found ways to deal with their symptoms and lead pretty normal lives. Hopefully you'll soon be one of them!
09-14-2004, 04:26 PM
:hi: Laura! :welcome: to the ICN! Sorry you have IC but thrilled you found us. Let me know if I can help you in anyway! :grouphug:
Powered by vBulletin® Version 4.2.0 Copyright © 2013 vBulletin Solutions, Inc. All rights reserved.