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  • On again off again

    Hi. My name is Heidi and I am 57 years old. I first started having IC symptoms when I was in my mid 30s. Back then I just thought they were bladder infections. Frequently I would go to the clinic with bladder pain and they would do a culture, find nothing but give me Bactrim anyway. Generally the pain would subside a bit after that but sometimes come back briefly for an unknown reason. I was never diagnosed for this but at the same time my mother-in-law was having a similar problem. Her doctor had recommended the first book I have ever seen on IC, "You Don't Have to Live with Cystitis" by Larian Gillespie, MD. This book talked of different treatments but also presented the "IC Diet" which was similar but not as comprehensive to the diet on this site.
    I followed the diet as religously as I could but it was hard. Also, since I was an athlete (runner and competitive cross country skier) I had a difficult time dealing with the fact that there was something wrong with me. Since I didn't have health insurance at the time I just stuck with the diet, I didn't go to the doctor fearing that when I did get insurance it would be considered a "pre-existing condition" and not be covered. (Eventually my husband and I got insurance though we were self employed and it was costly even back then). My family and friends were great about accomodating my dietary needs. I remember a friend throwing a big party and making super mild salsa from low acid tomatoes that she bought at the Farmer's Market, just for me.
    I have had varying degrees of symptoms over the years and have always gone back to the strictest form of the "diet" when they have gotten bad. Stress seems to be the factor which is a bit more difficult to control.
    Over the past year I was almost symptom free!! I spent a month in Mexico from mid November to mid December and did everything you aren't suppose to do---Margaritas, beer, chips and salsa---I'm sure you can all imagine the trouble one can get into down there---with nary a symptom. I breezed through the holidays and one evening told my husband that I thought this IC thing was finally over having enjoyed all the holiday foods and drinks I love with no problems.
    Well my bubble was burst a couple weeks ago. I am not sure what set me off but I suspect it is the fact that I have been taking Aleve daily for two months for a shoulder injury that I am having treated. I was in Mexico again celebrating my birthday and Valentines day...doing everything wrong of course...and after a "romantic" afternoon, woke up in the middle of the night with the dull pain and need to urinate that we all know so well. Assuming it was a UTI I started treating it with Bactrim (actually a similar generic available over the counter in Mexico for about $3.00 for a 10 day supply). Symptoms came and went over the rest of my stay but try following the IC diet when you are in Mexico...not so easy.
    Well I cam home on Sunday and pulled up this site. I have printed out the IC diet and am starting to follow the most conservative version. I already feel a lot better and am hoping to start including some more foods (ie. something to put on a salad that tastes good) after a few weeks. I am hoping to get this under control with out having to go further because I do not like taking medication.
    I guess the moral of my story is that it is possible to get a lot better and stay that way for a long time. It is also possible to relapse, so be prepared to deal with that when it happens.
    I think this is a great website and such a handy tool for those who are suffering and seeking relief.

  • #2


    Aleve is a problem for many ICers so if you do have it, you might want to look for another alternative. That along with Mexican food would put me into a horrible flare.

    Now that you have insurance, you might want to see a urologist.

    Sending healing thoughts,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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