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Do symptoms/flares seem to worsen over time?

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  • KathrynPInk
    replied
    Babs,
    You also sound like a strong one. I am so sorry your symptoms have gotten worse. I have had bad flares that remind me of the old days when i first got this illness, but I do go into remissions....I hope you do...some. I wonder if there have been studies on the percentage who do in fact, get worse.

    Katheryn

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  • Babs RN
    replied
    I am one the crazy odd ones. My IC has progressed and gotten worse over time. However, my life has continued to go on despite some of my physical challenges and some social things than have gone down as well. Welcome to the jungle.

    Hugs,
    Barb

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  • KathrynPInk
    replied
    I love "Meggie" what a sweet dog. How old is she? And Jen, I agree with Donna and Leeshel!
    Katheryn

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  • leeshel
    replied
    Wait a little longer

    Hi Jen,
    Donna is right and you need to wait just a little bit longer. It sometimes takes longer for some of us that others. I sure hope they start to help you soon. It is a hard job for any therapy or instill to repair those potholes in our bladders.
    thanks
    leeshel

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  • jen74
    replied
    Hi Donna.
    Thank you for the reply. I wont give up on the instills yet. I just dont get how I feel sooo much worse. I talked to my urogyne this morning,I had her paged becasue I thought maybe I had an infection. I told her about my installation Friday and told her that when I got home after 2 hours and was only able to pee out 6 ounces, but when my hubby cathed out the rest, he got out 15 and half more ounces. She said that I probably over extended my bladder and maybe that is why I have more pain. She said from now on, not to drink anything to much before and after the instill.
    She told me take a couple macrobid antibiotics today just in case of infection, though she said she did not think I could have one since I took a macrobid before the instill. Still she said she thinks I am sensitive to the instills. I mean I just hate the fact that I cant pee out the stuff and have to cath it out. It makes me think that is not normal and my body is reacting to it.
    Thanks again for replying Donna, I appreciate it. Hope you are having a good day. It is raining here in Chicago.
    Jen

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  • ICNDonna
    replied
    For Jen: I know how difficult it can be when you are just beginning treatments, but please give the instillations a little more time before you give it up. I know it took me months to feel better at first. And when I started instillations they were painful for the first few before I could see they were helping. Hang in there --- it will get better.

    Sending warm hugs,
    Donna

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  • jen74
    replied
    I actually seem to be getting worse as time goes on. I have been following the IC diet, have taken atarax, pyridium, tried elmiron but had to many side effects, and am on lyrica now and finsihed my second intillation Friday and am still in alot of pain.
    Alot of women do seem to get better as time goes on it seems though. I have no idea why I am not getting better and just getting worse. I guess everyone is different with this disease and how it effects us.
    Jen

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  • leeshel
    replied
    I Agree

    I agree with the others that I am much better than I was 8 yrs ago! I found out what foods, drinks ect that send me over the edge like Donna said. That seems overwhelming at first but it is doable. I also discovered what therapies helped me which was a long journey and one I thought was never gonna get any easier, but by the grace of God, these boards help and my persistence, I can get a small reprive every now and again. With my instills, I don't flare as often and they are not USUALLY as painful!! Every once in a while I get a flare that reminds me of the old days and that makes me so very thankful for what good days I am given now. I have other issues but that is a whole different post. When I start flaring and stay really bad day after day again, I schedule a hydrodistention. I know those don' t help for everyone, but they do for me and I am very grateful for those also.
    thaks
    leeshel

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  • L. Thomas
    replied
    Basically I have no problems that I can't handle now. So even though I will have this forever that is not something that worries me. My urogynecologist thinks my IC will not progress futher becuase I was diagnosed early and I responded to treatment. All I had to do was learn what to look for and not let it get ahead of me.

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  • Kathi
    replied
    I agree with Donna. I feel much better then when I was dx. Information is key in learning how to find YOUR triggers. Kathi

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  • kadi
    replied
    Yes, me too! I feel so much better now than I did my first few years with IC. Once I found my treatment combination that works for me (see below my name) & what foods/activities bother me, I can manage it much better.

    I work full time without problems, attend church most weekends, hike, exercise, travel modestly, wear jeans - none of which I could do the first year I was sick. Things are almost normal now...

    Sending a hug & letting you know there are better days ahead.

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  • ICNDonna
    replied
    Actually, it's usually just the opposite. I do much better than I did during the time just before and after I was diagnosed 32 years ago. I think it's largely because I have found which foods and drinks are a problem and which treatment options work best for me.

    Donna

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  • kspeer
    started a topic Do symptoms/flares seem to worsen over time?

    Do symptoms/flares seem to worsen over time?

    For those of you that have had IC for a while, does it seem to be a progressive disease? Meaning do your flares get worse the longer you have IC?
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