Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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JaffacakesandHalos99 04/22/2017

IC has taken over the last 3 years of my life.

After being diagnosed with polycystic ovaries and having two procedures to remove cysts from my ovaries, I was knocked back with incredible amounts of pain that left me house bound during my final year of high school when it matteted the most! After testing and testing and scanning multiple times, I was sent to a urogyneacologist to further decide what was wrong. Here I was sent for a cystoscopy is it? And the specialist found I had interstitial cystitis. After several months of trying to change my lifestyle; completely wiping my diet and being put on tablets, I got back on track with my life and only had an occasional flare up.

Unfortunately, in October of last year I was knocked for 6 with a bout of gastroenteritis and I havent been better since. I got slapped on more tablets, wiped my diet again and went fir test after test but nothing. My whole life is now on hold with the intense and consuming pain I am in, and no one ever understands, I don't think I've met anyone suffering with IC before.

isabelle1954 05/05/2017

If you were on antibiotics for the gastroenteritis, your IC may have flared up due to not enough good bacteria in your gut.(which antibiotics wipe out, along with the bad bacteria) Or maybe you need to take yogurt with lots of bifidobacterium or probiotics,, and as much garlic and onions as you can eat. The onions and garlic are natural anti-viral, anti-bacteria with no side effects. What tablets were you given? Have you tried baking soda for the pain?

cindys-ic 05/18/2017

I can't do onions at all, I had a uti and pain, went to urgent care ,She gave me prednisone for 9 days and a antibodtic. still have the urge to go pee alot. Tums help a little, but I'm so sick and tired of fighting this for over 2 years . ( right after my gall bladder came out , this started . Help. Does prelief work for anyone .I eat organic , fiber , meat,vegs, but I cant stand the burning feeling . will this all go away once off the med. I also take meds for thyroid, anxiety, High blood pressure, hiatal hernia, low potassium ,High chlost, Anyone out there that can help.

scarliepus 05/20/2017

Dear Jaffacakes (love that name!)
I just wanted to say that you are not alone with this. We are all fighting together and a cure gets closer and closer. Ten years ago no-one had put all our stories together but now there is a real drive by the medical profession to find answers. I know that the pain can be torturous, and some days you just can't take anymore, but dig deep, read all you can read, try each thing in turn. Take prelief with each meal to keep the acid out, never let your bladder get too full and drink enough water to keep the urine dilute. Small steps. Day at a time. Xx

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