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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Brittanysummers60 10/14/2016

Hi there, my name is Brittany. I just recently got diagnosed with Interstitial cystitis. I wanted to join a support group to get tips and ideas about how to help with flare-ups and deal with this disease. It would also be really nice to meet some people with the same illness because no one seems to understand.

Looking forward to chatting,

Brittany

californialynn 10/30/2016

Hi, Brittany,

Ever since DS built the new website many members have left. Hopefully, more will join.

What treatment has been prescribed?

Actually, my urologist wasn't much help since he couldn't find clear evidence of IC.....so I read posts by others online and began taking low dose Tramadol [which I was taking sporadically for my RA]; it resolves the pelvic floor pain. I also take an Rx diuretic for another medical condition, and it helps. So far, so good.

itsmaddy95 11/24/2016

Hey Brittany, How are you doing? What are you currently doing to cope with flare-ups? I'm here if you ever want to chat or message back and forth because it sounds like we're very similar. -Madison

isabelle1954 02/10/2017

Hi Brittany, Hope you're getting relief from your symptoms. I was able to avoid the pain meds by avoiding citrus, wearing loose clothing, using baking soda and having foot massages and hot foot soaksHope this helps.

jackie829 03/01/2017

Hi Brittany, I was diagnosed with IC back when I was 30 yrs old-27 yrs ago. I have tried MANY different things to help myself. I will tell you the things that have helped the most- 1. taking Elmiron daily. 2. Taking D-Mannose supplement 2x's day (1tsp) 3. Low dose of Elavil (25mg) nightly. When I am having a flare I have to use an ice pack/or heating pad down below. I kick my feet up & relax the best I can. Diet is important. It is best to steer clear of acidic food & drink. I was on Tramadol several yrs for pain but have been able to get off of it by taking the D-Mannose. I "go commando" while I am at home. Wear clothing that is not restrictive around the belly area. Comfort is of UTMOST importance to me. I make sure that when I am sitting I use the best cushioned chair possible. I really hope that you will be able to find out what works best for you to help you! Everyone's journey down this road can be different & difficult but in time you should be able to find the things that work & don't work for you. Feel free to e-mail anytime & I will be happy to give you the best advice I know...Huggs, Jackie

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