Online Resources and Support for Interstitial Cystitis

Interstitial Cystitis is a bladder disease that results in a chronic and severe inflammation of the bladder wall. Like many other chronic illnesses, the cause is unknown and Interstitial Cystitis patients will go in remission for periods, and then their symptoms will flare. Symptoms of Interstitial Cystitis include urinary frequency, urgency, pain in the lower abdomen and pelvic region, and vaginal bleeding. There is also severe pressure in the pelvic region that can make it difficult to walk.

Some illnesses related to Interstitial Cystitis are Fibromyalgia, Chronic Fatigue Syndrome, endometriosis, Irritable Bowel Syndrome, lupus and myofascial pain syndrome.

When someone asks an IC patient what Interstitial Cystitis feels like, he or she may have trouble explaining how severe the illness is. How I have often described Interstitial Cystitis to people is that it feels like having a bladder infection times ten 24 hours a day, seven days a week.

When I first became ill with Interstitial Cystitis I was desperately seeking answers online. My symptoms were so severe that I had to ride in the electric carts at the grocery store because the pain and pressure were so severe I couldn't walk more than a few feet. I thought for sure that no one else could be feeling as bad as I was. Once I started researching Interstitial Cystitis, I was surprised to find that there are not a lot of websites that focus on this illness. I have been able to find a few online resources and support websites and blogs that have been a great source of information.

Interstitial Cystitis Network, http://www.ic-network.com

The Interstitial Cystitis Network was founded in 1995 as the first website dedicated to Interstitial Cystitis. The original goal of the IC Network was to provide high quality, free information to Interstitial Cystitis patients. They succeeded in their goal and have become so much more. Over the years, the website has grown dramatically to include a message board and forum for IC patients to discuss their illness and to share tips they have learned along the way. The IC Network was also the creator of the original "ICN Patient Handbook" that provides wonderful information for newly diagnosed patients.

The site has an online store where patients can purchase needed products to help live with their illness and a newsletter is published that can be purchased.

Interstitial Cystitis Association, http://www.ichelp.org

The Interstitial Cystitis Association was founded by a female doctor who is also an IC patient in 1984. The Interstitial Cystitis Association mailing list includes over 15,000 people. The goal of the ICA has always been to educate and to raise awareness for patients that this is not a psychiatric disease. The ICA is well known for their research promotion and funding, patient advocacy, and patient support network.

The IC Underground, http://www.ic-network.org/blog/

The IC Underground blog is the Interstitial Cystitis Network's news blog. The blog provides feature articles, Interstitial Cystitis news and research information. The blog is not updated very often anymore but if you are newly diagnosed, there are some helpful articles written on there.

Fighting Fatigue, http://www.fightingfatigue.org

The owner of the Fighting Fatigue website has Interstitial Cystitis, Chronic Fatigue Syndrome and Fibromyalgia. She devotes her time to writing about all three illnesses on her website. She has close to 50 articles on her website relating to Interstitial Cystitis and bladder disorders.

These are the main websites and blogs that deal with providing resources and support for Interstitial Cystitis. As you can see, this is only a drop in the bucket compared to online information that is provided for other chronic illnesses. Maybe once more is done for Interstitial Cystitis awareness and research a cure will be found.