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.
Hello,
I am new to this website and it is a blessing I have found it. I have been wanting to find a support group and did not find anything until I ran across this site. I was diagnosed with IC this past February! This is a terrible disease that affects my daily life and it would be amazing to hear other people’s stories or just to talk to other people who are dealing with this same disease. I have terrible frequency with my IC, but I notice that a few days before my menstrual cycle I am TERRIBLE and can not get off the toilet or else I will be running back in 5 minutes. Is anyone else like this and what do you do???
I have ordered Cystoprotek and Desert Harvest Aloe Vera pills to help my IC and I should receive them sometime this week. I wanted to start off with natural herbs such as these before I tried prescription medications because I am only 21 years old. Anyone have any luck with these???
I look forward to hearing from you all!
I too was diagnosed with IC last year. I also have severe flares days before I am about to get my menstrual cycle. I’ve been able to keep a diary of my diet - i.e., what I eat/drink in the event I flare up. I have had terrible reactions to dark roast coffees, teas, and basically any drink with caffeine in it. Tomato based foods are also foods to avoid (but you prob already know this). The only flares I cannot prevent are premenstrual flares, flares caused by stress, or even flares caused after intimacy. Sorry you’re going through this, but you’re not alone. I’ve traveled a long road trying to find foods and drinks I can consume without paying for it later, and ways to manage the flares as best I can without having to resort to medication. Lots of water is key!
Jen