Interstitial Cystitis Community
IC
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This patient support community is for discussions relating to Interstitial Cystitis .

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IC

Need better treatment for intercytial cystitis. I have been on elmiron for 7 months and have not had much releif and it is very hard to control diet. Help!!! I also have a problem with the rectocelr repair they did 6 weeks ago with hysterectomy. I have hard nub in the back side of the vagina and can not have sex. I need to know if this will get better and if feeling the nub in there is normal; and supposed to be there./????
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Avatar_f_tn
I NEVER GOT A RESPONSE FOR THE LAST ? .And I need to know if the disease , intersticial cystytis can cause cancer or problems with kidney, because I am in allful pain/at kidneys and it has gotten worse since I had hysterectomy on Apr.16. I have been back to my gyno. for the 6 week check up and had a bacterial infection. I have not had one of those since i was in my early 20`s. They said it was not a sex transmitted disease and I need to take FLAGL and I have been taking it a few days. It makes me dizzy , but I have been taking med. Well, my symptoms got worse after taking the med. I have been having excruiating? pain up my vagina and where my kidneys are in my back.I could hardly sleep last night and I never took as much lortab when I was even sent home from hospital. She gave me prescription and I figured ,now that I am back to work/2 weeks/that I really should feel pretty good. I don`t. I own my own business and have to go on., cuz, I am the operator and soul of business.
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917735_tn?1245700233
hi- i'm a new member of this site, but a long time sufferer of IC, it really depends on getting good dr's, and i mean, dr's from big hospitals that see IC all of the time, because it wasn't until i got into one of Boston's big hospitals that they really 1)understood my symptoms 2) had experience with them so knew what Else to try when all the good ole stand-bys didn't work, and 3)explained it all to me in a way that i could understand, and could believe that they weren't just brushing me off. so- bottom line there are a million different ways IC can affect someone, but for sure the first things they tell you is to stop the caffeine, citrus and acidic foods, look into the IC diet, and carbonated drinks as well. I got kidney stones that they attribute to the IC, but mine have never come out, so they leave them in there and they Do cause me a lot of pain. The good dr's tell you to take out the stones if you can, and that people with IC are Way more sensitive so a stone or problem in the kidneys that may not bother a "regular" patient, could def bother a patient with IC.  Good luck to you in your journey - save yourself a few years of torture and try to get to a big hospital right away so they can tell you what is the best treatment for You, not just try this try that lets see if something works for ya.... ok, thanks - i hope some of this may have been the littlest bit helpful.
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Avatar_f_tn
Thank you for the response. I have been experiencing all of my recent back pain/at the sit of kidneys/ to the hysterectomy I had 6 weeks ago. I know the ic flare ups make it sooo bad and everytime they check my urine there is blood in it. I may have stones also, considering the pain is sooo bad at times I can`t stand it. I am going to a uro/ gyno dr. at the greenville memorial hosp. system in SC. in July, unless I wind up in the ER insead.
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