Interstitial Cystitis is an Urgent Public Health Problem

An estimated three to eight million women and one to four million men in the USA, and millions more around the world, struggle with a rarely discussed pelvic pain condition, interstitial cystitis/bladder pain syndrome (IC/PBS). Seniors, young parents, teens and children may struggle daily with uncontrollable urinary frequency, urgency and/or debilitating levels of "razor blade" like pain in the pelvic area, particularly as their bladder fills with urine. Sitting, driving, working, attending school and intimacy are difficult if not impossible.

Obtaining a diagnosis and treatment can take years as patients visit five or more doctors, some of whom label the patient as hysterical or overly emotional. Countless women have had inappropriate hysterectomies only to discover, after the fact, that their pain was coming from their bladder. Men and women are often told that they have sexually transmitted diseases though testing comes up negative. Children who suffer from pain may be refused treatment out of the mistaken assumption that "children cannot feel pain." This must stop.

Physicians of all specialties must be educated about this wide-spread and devastating medical condition. Treatments should be affordable. Self-help therapies can be shared, particularly to those patients who cannot afford health care. IC patients should not have to endure shame or blame when seeking help and support, especially from family members and friends.

A CALL-TO-ACTION has been issued by patients around the world to raise awareness for interstitial cystitis / bladder pain syndrome by observing IC Awareness Month in September 2011. We refuse to remain silent. We choose to fight back and to educate medical care providers and the community at large about the desperate plight of IC and pelvic patients.

Our primary goal for IC Awareness Month 2011 is to empower patients to educate their own communities and providers about IC. It takes more than one voice and more than one set of hands to do the job. We need hundreds if not thousands of patients who will devote just one day or even just one hour, in September, to reach others in their communities. Click here to see the many ways that you can participate.

Join the fight! Join the cause! We are more than our IC. We are strong, educated, empowered, compassionate and determined to make a difference.

Patient Kudos and Honor Roll!

• Our gratitude to BlogTalkRadio Host Joseph Aquilino for dedicating two shows to IC Awareness featuring Jill Osborne. Known as Joey Giggles, he is an RSD patient who passsionately advocates for pain patients across the web and he has a fantastic sense of humor and optimism. Nearly 1000 patients participated! Both broadcasts (9/19/11 & 9/8/11) are now available on demand!
• IC patient Wendy Farrell for telling her story to the North Countryman (NY).
• Elizabeth Branch Duncan who asked for and received a proclamation from the Governor of the great State of Tennessee!!!!! Woot!!!
• High school student Rachel Albers for setting up a fund to help raise money for her mothers elmiron prescription! Read the article!
• ICN Member Scarlett for compassionately raising the issue of elderly IC patients in nursing homes who are not given access to restrooms promptly and kindly! Read her statement here!
• IC patient Hiena Ghani who asked the City of Edmonton, Canada for a proclamation honoring IC Awareness Month!! Mayor Stephen Mandell issued it on September 19, 2011
• Pain Pathways Magazine honors IC Awareness Month by printing a full color poster in their Fall 2011 edition!!
• ICN Member Holly Goodwin gets her paper, the Jennings LA Daily News, to do a story on "Living with Interstitial Cystitis."
• IC Patient Jessika for featuring IC daily facts in her blog Pierced Thoughts!
• IC Patient Dawn Elder for doing the ultimate IC Awareness picture!!!
• Janet Campbell Cordosa, of Ana's Treasure Chest, for donating proceeds from sales in her store in September 2011 for IC research!
• Trisha Hoekwater will be exhibiting art in the nations largest art competition, being held in Grand Rapids MI from 9/21/11 to 10/8/11. We wish her the best!
• Roxana Cawood has written an intensely meaningful poem on life with IC in honor of IC Awareness Month! Read it here!
• April Lee for starting the new Bowling Green IC Support group and spreading dozens of posters through her hometown of Bowling Green KY. She visited every urologist and gynecologist in her town to distribute posters.
• Tali Kateri for writing an excellent blog "Annoyance is quickly approaching." She's ready to debate anyone who dares to suggest that IC isn't real.
• Missy Dufourq for creating our awesome 2011 posters!

What have you done for IC Awareness Month?? Tell us your story and we'll add you to the website. Emails should be sent to info@icawareness.org

Five Things You Can Do TODAY to help!

1. Announce IC Awareness Month on Facebook, Youtube or twitter by posting this website line. http://www.icawareness.org
2. Print out (or email) the IC Awareness Month press release and send it to your local newspapers! Just imagine what could happen if 500 newspapers did stories on IC this month.
3. Download our IC Awareness Month posters and send to your urologists and post at local coffee houses and throughout your community
4. Send a proclamation request to your local city council and ask for their support of IC and pelvic pain patients in your community.
5. Send a Thank You letter to any doctors that have treated you compassionately with your IC! They need gratitude and thanks to keep going!