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Having success and tips for new IC patients

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  • char158
    replied
    I Agree WOW. mostly everything you have said i did about the same thing,,
    but i didnt know about the L Gel? Is that over the counter or perscription? That would help with flares.. just started all the meds a week ago.. i know i have a long way to go.. dieting and will look into pelvic exercises. thanks

    Leave a comment:


  • Jinny Jean
    replied
    This post also gives me hope because I am on the exact same things!.. I know they take time to work (which has been long enough thank you very much) lol.... but im trying to get my hope back after this flare. Re reading this messege helped alot this morning

    Jenn

    Leave a comment:


  • vivsmom
    replied
    Thank You, Thank You

    This was a very hopeful read. My symptoms started a month ago and I am working with a urogryne and a PT and doing and IC diet. My anxiety has blown off the roof and I read your post every day to remind me this takes time to heal. When my urogyne and psych would not give me Atraxax I asked my primary.
    Thanks!

    IC symptoms started May 10, 2010
    Taking Cytoprotect
    Prelief
    Aloe Vera Caps
    PT and home exercizes
    Lexapro
    Clonazapam and Depakote (Bipolar dx after daughter born 2 years ago)

    Leave a comment:


  • flowerangela
    replied
    im glad this post was brought back i love it too and am a fellow queen of research myself.hope to write something similar to this someday.

    Leave a comment:


  • Jinny Jean
    replied
    AMAZING. One day I will write something like this as well, and help everyone else out from what I have learned! <3 Since I am the queen of research... lol I am always searching for posts like these...I found over 500 the other day,and they are all listed! Not sure how, but I know it was on Google, and took me hours to find. ANYWAYS. I know there are always new people every day and jut like me, they can always use hope!! This first post is sooo helpful!!

    Wishing everyone an awesome day!

    Jenn

    Leave a comment:


  • Waves
    replied
    Great post. Thanks. I would only add that if you aren't fortunate to have an understanding/competent medical professional, to try, try and find one. I'm waiting to be able to change to one (insurance issues) whom I've identified through connections here.

    Leave a comment:


  • anniepat
    replied
    Hi Caitlin
    I think I fall into the same category as you. Diet and alcohol has no effect on me and I don't experience any frequency or painful urination. I just have pelvic pain and some burning. I have been on meds since March 2006 and with no significant improvement. My urologist told me he doesn;t know what;s causing my pain but I have a suspicion it may be nerve related aswell. Did your doctor suggest anything to help with this. I am currently waiting an appointment with a pelvic pain specialist but there is a waiting list of 5months - Aaaagh!! I need something to let me function normally again as I'm slowly going insane!!

    Anniepat
    Vancouver
    Canada


    Meds - Elmiron, Atarax and elavil

    Leave a comment:


  • goldenfriend
    replied
    Thank you so much!

    Thank you so much for the really helpful synopsis of your experience with IC. I was diagnosed a year ago April and my life (as you know) has changed dramatically. I have had on-going "hot spots" of inflammation throughout my body for the past 20 years - I have scleritis (inflammation of the connective tissue of the eye), costochodritis (inflamed sternum), IBS/bouts of non-specific ulcerative colitis and now IC. I have a wonderful urologist but unfortunately I could not tolerate both Atarax and Elmiron (had very severe side effects). So I am basically on nothing but Prelief before meals and probiotic capsules, as well as eating a very careful and IC-friendly diet. I still miss coffee so much! Anyway, I have seen many doctors for all of my inflammation issues and each one runs a ton of tests (lupus, MS, rheumatoid arthriitis...) but nothing has ever come up positive. I just need to find someone who can help calm my system down. I, too, did physical therapy in the beginning and found it SO helpful (she specialized in IC and other pelvic floor dysfunctions). Due to a change in insurance, I haven't seen her for a while and really need to go back.
    Wow, that was a lot more than I meant to write...really just wanted to thank you for your honesty, insight and info...
    Hope you are having a pain-free day!

    Leave a comment:


  • Taramc
    replied
    Thank you

    This was my first stop after registering on IC-Network. And it has helped me greatly. THANKS!

    Leave a comment:


  • Moonheart
    replied
    Absolutely fabulous post! Yes please contribute to the cookbook! Please PM me for my private email address. That would be lovely!

    Someone mentioned acidic urine? Unfortunately meat is highly acidic. It's one of the most acidic foods out there with red meat being about the most acidic. So I can't remember how it factored into the IC diet, but logically, it should be a big no no in the diet if we are going strictly by PH value only.

    I know many things in her post made an impression on me. I have survived two highly abusive marriages and I am almost positive this is the cause of my IC. My Uro initially asked me if I was abused and I guess now I know why. Sexually when I was a child, and the two marriages, the second being so highly traumatic many different times, abuse early on through the pregnancy, early in my daughter's life, the motorcycle accident, the second time my husband tried to murder me, the molestation of my daughter, our eviction from our home twice in one year, finding out my husband was brain damaged and having him "healed" of that and having to learn to forgive all that and deal with him again.....

    My body and my bladder just "gave up". I don't blame it a bit. And I know I'm malnourished as well. So all of that post applies to me, and I can take so much with me to help to heal, even though I'm having so much success, I still flare, and have bad days, so if I could have a complete remission that would truly be a miracle.

    Thanks again so much!

    Leave a comment:


  • SandyRN
    replied
    Good post, but I wanted to make one comment. Most people with IC get no bladder relief from the Lidoderm patches. They simply don't reach deep enough to get into the internal organs. However, they DO help with that referred bladder pain in the back. I'm sure some people could possibly get a little help from these patches, but it's the exception, not the rule.

    I've read that they're GREAT for VV...cut them into strips, and place them like a panty shield over the irritated area.

    Hope this helps.

    Leave a comment:


  • sami4
    replied
    Loved the post

    Really loved your post and in particular a couple of points you made that I too, think are important; If your doctor isnt getting it--find another one and drive to find one if you have too. Pelvic floor dysfunction plays a major part in IC symptoms, and the bladder is just a resivour for the chemical stew that makes up most American diets. After time, the body rebels. Lots of good common sense.
    Last, can I come to dinnner?
    Sammi

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  • gigi
    replied
    Thanks so much for that post. It was very informative.

    How do the lidocaine patches work? Do you place them right over the bladder or just anywhere on your skin like pain patches?

    Leave a comment:


  • CCB
    replied
    Thank you so much for your story. It's so informative.

    Leave a comment:


  • alert10
    replied
    Thanks for your post. The only reason I relived my unpleasant history of the IC experience was the intention of helping some one. I'm glad to hear that you think it gets out a helpful message. This IC site cetainly helped point me in the right direction. I found very helpful information in the success story section. As we all know, we wouldn't wish IC on anyone. We can only feel empathy.

    Leave a comment:

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