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LONG-TERM SUFFERERS-Do you get worse?

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  • **Angie**
    replied
    mayray~ I just read your post about helping others even though you've gone into remission. I think that's wonderful. I and I'm sure others need to hear that there is hope. Thanks for your support.

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  • mayray
    replied
    I started out onDMSO and it worked for a year but then stopped; I then went on elavil at 50 mg. I was tired all the same but i kept on. I then dropped down to 25 mg and then 10. I added elmiron to this and I have been feeling great for 6 years. right back any time you want to teresa

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  • Smokey
    replied
    mayray

    what have you taken or done to put yourself into remission?

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  • mayray
    replied
    not so in all cases

    I have been in remission for 6 years and my life has returned to normal; however, I still post, am active in my local support group and take phone calls from people who have IC. Since going back to work I cant do it 24/7 but I would never stop helping other people, pretty selfish if one does that.

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  • sandramac
    replied
    I'm sorry to say I,m worse.

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  • tbn
    replied
    I think I was in remission in the second grade but now I am much worse. Hahaha. That second grade part must sound ridiculous.

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  • Bethrlk
    replied
    I agree with the idea that IC symptoms sort of "waxes and wanes." I can go through a 6-9 month remission, but then a flare will occur, which brings on the old, and also new symptoms - which drives me nuts - but there ARE good days, which can be hard to remember when you are in pain and running to the bathroom 20X a day!

    When I am in a remission I don't use the message boards as much, either. THANK GOD they are here, though!

    Hugs,
    Beth

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  • LISA41
    replied
    long term sufferer

    yes , I have gotten worse ! I am relying more on pain meds and doing less of what I like . The flares are more frequent and last longer

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  • Smokey
    replied
    Does Ic Progress?

    I believe my Ic has progressed purely because I was not diagnosed after three years later when my symtoms first started , going from specialist to specialist nobody knew what I had. At first I only had frequency, the pain came two years later. If i was diagnosed early I believe in my heart that most likely I would have not suffered the pain. I didnt know what I had so I was eating and drinking all the wrong foods and still was smoking(a big no no) I was pouring acid onto wounds basically. Now I am trying different treatments to treat the pain, I am getting there but slowly.

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  • slukic
    replied
    Definitely true that people that feel good do not post or read the site often.
    I am a perfect example. I do not have bladder pain or very very minimal - mostly urethral symthoms (urgency and some burn). I am completely healthy otherwise. So when I have no symthoms I do not read any posts. I was in remission for 2 years - in which I probably did not visit the site even onces.
    The symthoms came back in January this year and I have blocks of good days and block of bad days.
    This time around, very little bladder issues, the burn is minimal but the urgency is worst. Frequency is more then normal - I do not go to bathroom more then 8 times a day max - I guess I can hold a lot.
    So I would say it did not get worst but different.

    NOTE: IC never confirmed. Cycto w/hydro negative. The doctors thing it is some kind of urethral IC. I am on strict IC diet. Taking supplements.

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  • Curly
    replied
    I was diagnosed in March 2006. I have not had IC long. During the past year I have had 1 major flare up. I did a bladder hydrodistention again and it calmed my bladder down. I also take my medicines and begain on Elmiron about a month ago. I do not know if my IC will get worse. I enjoy my life while I feel good because I kow how bad the bad days can get. So far my IC has been manageable. It is hard to accept that I have this disease. But I cannot change my bladder.

    I hope that you find the treatment that works for you. And as always, I continue to pray that we all have a cure one day soon.

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  • lutznancy
    replied
    What is MSM?

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  • sbbear
    replied
    does IC progress

    Hi all,

    I have had IC for almost 5 years and I felt so scared when I first was diagnosed. I haven't been on the site for a long time and like VM pointed out - I am one of the people feeling better and so not posting as much.

    Just wanted to let you know that it does get better. I had a year of ups and downs and fear and pain. I was on this site constantly. I felt very alone. But, all of these wonderful people made me feel comforted and many gave me hope with their words of experience and encouragement. Good luck to you and may you find what works best for you.

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  • curlycue
    replied
    Ic

    I really appreciate you and all the ladies sharing there Praises and Struggles. THANK YOU

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  • jen48446
    replied
    I agree with Kim!!! I continue to visit to share my experiences with others in hopes that I will help someone, maybe even a few every so often. I feel it's important to share what I've learned too, when I was 1st diagnosed I was as lost as all the newbies are now!

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