10-31-2008, 06:20 AM #1
- Join Date
- Aug 2008
- Spokane, WA
I was diagnosed with interstitial cystitis about two months ago after two years of unexplained pain. Of course knowing what i have hasn't made things any easier for me...probably worse. Now i know its permanent. It has always been very painful for me but about three weeks ago it got a lot worse and its driving me absolutely insane. Ive been careful about what i eat and I take my meds but it just wasnt going away. I went to the doctor and they checked for a UTI and a yeast infection but there wasnt any sign of either. He told me there wasnt anything he could do for me. So where does that leave me? Does he expect me to just grin and bear it. This disease has destroyed my life. I cant do anything anymore. I cant wear panties or pants because they make things worse. I cant take anti-depressants because they make it worse too. I cant eat anything. I have to drink a gallon of water a day for meds that make me nauseas (sp). Im terrified of my toilet, how sad is that. i cant go anywhere because i normally get stuck in the bathroom until everyones ready to go home. I cant be intimate at all with my boyfriend, who has been so patient for me through all of it. The pain is unbearable and apparently theres nothing i can do about it. I feel so alone, I dont have anyone i can talk to about this because they just dont understand. All I do is lie in bed and cry. Im only 19 and i feel like my life is over. Im at the end of my rope here, i just cant do this anymore. How does anyone live with this?!
Sorry if anyone finds this offensive im just so sad and i needed to vent a little.
10-31-2008, 06:29 AM #2
- Join Date
- Jun 2006
Hi. This can get to be a lot to handle at times. I have been there before myself. What pills are you taking? Have you tried instills, TENS unit, pain meds? If you have only started out for 2 months on finding something that will help with the IC then you have lots and lots more things to try. I've had IC for 11 years and I'm still trying a few things at times. I have a fear of pills so it takes me longer that way to try something. Most pills just don't like me and I have never done anything to them. Are you seeing a Urologists? What tests have you had done?
I'm not an expert with all the different meds and thing there are to try but I'm sure someone else will jump on here to help you out. There are lots of brains running around on this web site waiting to help another fellow Ic'er out.
Hang in there. Don't give up. It might take some time to find the right doctor or right meds to help. I think that IC is only given out to people who are strong willed really. We are all fighters.
10-31-2008, 06:42 AM #3
- Join Date
- Aug 2008
- Spokane, WA
I had the dmso treatments which made things very worse. Ive been taking pyridium everyday for about a year now, and ive been on this elmiron for about a month. I know it takes awhile to take full affect but should things really getting worse in the mean time. I have taken hydrocodone before but it affects everything but my ic. And im currently in between urologists because the one i have now is a real jerk but i cant get in to see the new one till december...late december. Btw is it normal for them to do the hydrodistention thing and diagnose me with just that without doing the cystoscopy (sp)?
11-01-2008, 02:12 PM #4
Just know that you will get better eventually. When I saw the title of your post I could totally relate. I used to say "I am sick and tired of being sick and tired."
There are a lot of things you can do to help yourself. Do you have Robert Moldwin's book "The Interstitial Cystitis Survival Guide?" That is a wonderful place to start.
Julie BHugs, Julie B
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