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  • stacyY
    replied
    hi Stacey;
    I Am so so sorry to hear of all the things you have been threw. I cant imagin going threw all of that. and now have IC on top oof it all. My goodness. Well I had the Installations done, and they didnt work for me at all. My doctor will not even do them on me any more because it acculy made the pain worse. The thing with IC is that everyone is diferant. What works for one might now work for another.
    I have not been on soma, But i take flexeral when i need it. It does help to relax the muscels. You need to practice not tighting up your pelvic muscles, that makes the pains worse. I also take Elevil, up to 150mg right now. But my doc said some go higher then that before they can relax the pelvic mucels enough,the amount of stress you must feel i bet your pelvis is just clenched. That is what happends to me. You just need to find the right combination of everything. Hopefuly your medicanwill help you to feel better soon. take care dear.

    stacy Y

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  • L. Thomas
    replied
    No, I do not have any food sensitivities. My Orthopeadic Suregon referred me to an allergist before total knee repalcement because I had a nickel allergy. When the allergist found out that I had IC he tested for all the food sensitivities because he knew that most ICers have food sensitivities.

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  • soccermom32
    replied
    You didn't say anything about diet modification? Are you following the IC diet?

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  • L. Thomas
    replied
    Donna's right. There are a number of different instillations. I would think if they are not working the way the gyn thinks they should you might want to ask what his next plan is.

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  • stac7_8
    replied
    Thank you both very much for the support. I don't have a URO yet I have just been going to this new GYN. What I'm not sure of is why he gave me SOMA!!!! I mean it is ok I guess but how does that take away the pain? If u have any help on this I would love to hear it. I have been on Vicodon for almost 3 yrs and I know that it is not good due to liver problems. No I don't feel like I have to have them all the time just when I'm in pain. The most that I have taken in a day is 4. And for being on them for 3 yrs I think that is pretty good. I have been very careful. But at the same time I do believe that my body can tell when I have not had them in a few days. Anyways thanks so much and take care

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  • ihurttoo
    replied
    Sorry to hear of your recent d/x. You have definately had a rough go of it! I agree with Donna that you should talk to your Uro, since there are many different combinations they can try. It takes several months for most of the meds and the diet to work. I know it is terrible waiting and hurting. But, most patients do end up finding something that helps.

    I hope you get to feeling better soon! Meanwhile, I am really glad that you found us. I think you'll really like it hear and get alot of great information and support.

    Hugs,
    Amy

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  • ICNDonna
    replied
    The treatments you are getting are called instillations. There are many different medications and combinations of medications that are used. If the one he's using aren't working well, you could talk to your uro about changing the solution being used.

    I hope you feel better soon.

    Donna

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  • stac7_8
    started a topic Confused

    Confused

    My name is Stacey, I have 3 children, Brandon 10, Victoria 2, and Anthony 6 months. I'm in a relationship with a wonderful man who has maybe not understood all the time the pain but has stood by me and been there to hold me or give me my medication.

    I just found out last week that I have IC....or we hope that is what it is. I have always had "female" problems. From heavy long periods to cyst, tumors...just a bunch. In May of 2005 I had to have my left ovary removed due to a tumor that had teeth and hair. I forgot the name dermoid I think. Then the Hurricaine's came and we had to leave due to Rita.(I live in Texas, near Houston) Found out I was PG the week before and lost the baby the week we had to leave. Thankfully I was able to get pg again very soon. Had a very had pg with my last son.....was in alot of pain and maybe now I know why. Anthony was born in September. November I was told that I had another cyst and it was not that bad or big...talked with my doc and I told her look I don't want to be in PAIN anymore I want to stop all these pain meds and she said ok lets do a Hysterectomy. I said go for it. Had that done this past DEC. Found out that the ovary was consumed by the cyst and was as large as a man fist.

    Well 3 months later still in pain. Changed docs and here we are today. I'm taking Permain, Lexapro, Elmeroin, Vicodon, and now soma. Not sure why on the soma!! I'm supposed to go in for these "treatments" once a week. This is where they insert a cath ( I have to have a ped cath or I have major problems) and put some kind of numbing med into my bladder. I'm not real sure that it is working. The doc said it is supposed to work right away. But today it didn't really seem to help at all.

    I just don't know what to do at this point. I'm very grateful for this forum and thank anyone who might help me out in the long run. Please everyone take care and thanks again
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