IC Awareness Month

September is IC/BPS Awareness Month

June 13, 2015
by icnjill

2015 IC Awareness Month Seeks Volunteers Who Want To Help

Each year, IC Awareness Month is developed by you, the IC patient. Yes, that’s right. We don’t use a high powered marketing firm. There are no expensive consultants who take charge. We’re salt of the earth, IC on the street kind of people. Why? Because IC patients have a LOT to give. They have fresh, creative ideas that are relevant to IC patients. They understand implicitly why its so important to educate not only physicians but employers and community members about IC and pelvic pain. They know what it’s like to fight back when their rights have been threatened. They’ve also shared the struggle of trying to pay for expensive treatments. They (WE) have the passion, the drive and the motivation to make change in the world. By educating others, we can and will make a difference.

IC Awareness Volunteer Team Recruitment

It’s time to put our committee together for 2015. Will you help? We need:

(1) Contest organizer & judges to manage our IC Awareness Month poster and art campaigns

(2) Media/Press specialists to develop our media campaign and press materials

(3) Writers to develop stories related to IC

(4) Techies to develop/implement relevant fun activities and/or apps on our website or social networking platforms

(5) Social Networking Guru’s to develop our internet campaign.

(6) Interested, passionate patients who want to help


The committee generally works from July through September. Some may only contribute a few hours while others may choose to be more involved on a weekly basis. It is entirely your choice. The gift of your time is greatly appreciated!

Sign Up!

If you’d like to get involved and serve on our committee, please send an email with your name, interest (i.e. role you’d like to fill), phone number and best email address at: volunteers@icawareness.org



June 13, 2015
by icnjill

IC Awareness Banner Art Contest Announced

It’s that time of year again. In just three months interstitial cystitis patients around the world will gather to share their stories, demand affordable treatment pricing, educate their community and, of course, request compassionate medical care. IC Awareness Month is the only international educational campaign designed to raise awareness for interstitial cystitis and chronic pelvic pain syndrome. And it’s managed and organized by patients just like you.

This year, we’re starting the creative portion of the campaign early with a banner contest. We’re looking for creative banners that we can use on this website and our other social networking platforms. A $100 gift certificate will go to the winner!


Size = 1100px wide by 350px tall (wordpress size. We will size it down for Facebook, etc.)

Theme/Message = YOUR choice. It can represent men, women and/or children with IC and pelvic pain.

Must include the URL: www.icawareness.org

Format: Must be in .jpg format or .png format.

How to Submit:

Please send your entry to: artcontest@icawareness.org

(*All entries become the property of the IC Awareness Month Campaign.)


Our Winner Last Year – 




October 4, 2014
by icnjill

The WINNERS of our 2014 IC Awareness Month Poster Contest ARE:


Christy Keyes wins first place this year for a gorgeous yet satirical poster that utilizes color and text powerfully. Using a carnival theme, she shares the frustration that patients face every day as they struggle with a variety of symptoms and frustrations. Brilliantly done…. and the clear winner in this years contest!

2014 IC Awareness Month Poster Contest First Place Winner


Becca Keyes, Christy’s daughter, offers a delightful image with the most important message of all… that patients “believe” in the future and in themselves. She uses the color of IC Awareness Month beautifully!

2014 IC Awareness Month Poster Contest Second Place Winner


Addy Wilson’s portrait shares the often invisible face of IC. That patients can look so normal on the outside and yet, on the inside, feel so helpless. We must always remember that the “inner” IC patient needs love, comfort, support and encouragement.

2014 IC Awareness Month Poster Contest Third Place Winner


Nicole Johnson entry is the counterpoint to Addy’s above. In it, she reminds us all that the gift of pain is empathy and compassion for others. She reminds us all that we are actually much stronger than we often realize.. and it is in that fight to regain our lives and reduce suffering that we truly shine.
2014 IC Awareness Month Poster Contest Third Place Winner


September 30, 2014
by icnjill

Daily Fact #30 – Honoring Those Who Have Passed

IC Awareness Month Daily Fact #30 - Honoring Those Before Us

On this, the last day of IC Awareness Month, we honor those patients and providers who are no longer with us. Many helped the IC movement become the vital, vibrant community of 2014. Daniel Brookoff MD was the first doctor who advocated for the aggressive and compassionate treatment of the pain of IC. C. Paul Perry MD, a co-founder of the International Pelvic Pain Society, who helped to create the first professional organization dedicated to the relief of pelvic pain.

We honor IC group leader Michaeleen Franklin, of Tucson AZ, who was the longest serving IC group leader in the USA before she suddenly passed a few years ago in a plane crash and Evelyn White, co-founder of the IC Redwood Empire support group which was the precursor to the IC Network, taken far too soon after a valiant fight with cancer. We are grateful to every man and woman who started support groups!

And to the many patients who, through no fault of their own, suffered indignity after indignity because IC was not recognized during their life times. We acknowledge their struggles, their pain and their difficulties finding health care. Young and old, single and married, we lost you far too soon! We will continue to try, every day, to honor your memory.

One hundred years ago, IC was barely recognized as a medical condition. Patients were often suspected of having bladder stones or tuberculosis in the bladder.

Fifty years ago patients with IC were often sent to mental hospitals out of the mistaken perception that IC was a mental disorder. They, too, often lived in despair.

Twenty five years ago, patients with IC found a sanctuary in the first organized support groups in the United States, Canada and England. But many still were told that I wasn’t real and were denied care.

Nineteen years ago, the first website and online support group (The Interstitial Cystitis Network) was created for IC patients. Many new therapies were under development, including Elmiron. Patients began to feel hope.

Ten years ago, more IC patients were received a prompt diagnosis. The IC research movement was thriving. The first supplements were created (CystaQ, Desert Harvest Aloe, CystoProtek) that provided hope for patients who lacked access to traditional health care or who could not afford treatments.

Five years ago, new diagnostic and treatment guidelines were passed in Europe, Japan and the USA which created new, consistent treatment plans that have helped millions.

And today, in 2014, IC patients have more resources, more qualified medical care providers and far more information than ever before. We are more hopeful today than ever before due, entirely, to the struggles and successes of those who came before us.

THANK YOU! – Jill H. Osborne, IC Awareness Month Leader & IC Network Founder


September 29, 2014
by icnjill

Daily Fact #29 – Smoking and IC


When a 2012 research study was released that showed the children of smokers were at high risk of developing severe urinary disorders including the symptom of IC, we were stunned (1). Children between the ages of 4 through 17 who sought care from a pediatric urologist for severe urinary symptoms were included in the study. Half were exposed to cigarette smoke in a car and 23% had mothers who were smokers. Researchers found that the greater their exposure to second hand smoke, the worse the children’s bladder symptoms.

Cigarette smoke releases thousands of cancer causing chemicals which pass from the lungs, through the bloodstream to the kidneys where they collect in the urine. The bladder wall is then exposed to high concentrations of toxins thus explaining why smoking is the leading cause of bladder cancer (2).

For the IC patient, smoking could be even more devastating. Because the bladder wall in interstitial cystitis is damaged, these carcinogens and toxins travel more deeply into the bladder wall where they WILL cause yet more severe inflammation AND, I believe, a much greater risk of bladder cancer.

For the sake of the health of your children, your family and your IC, you MUST stop smoking immediately!

– Jill Heidi Osborne MA


Robert Wood Johnson Medical School. “Second-hand smoke affects bladder function in children, study suggests.” ScienceDaily. ScienceDaily, 7 June 2012.

Surprising Link: Smoking and Bladder Cancer. Cleveland Clinic Health Hub. 22 October 2013


September 28, 2014
by icnjill

Daily Fact #28 – Types of IC Flares


Interstitial cystitis and bladder pain patients often experience sudden and unpredictable “flares” or worsening of their symptoms. There are a few distinct types of flares.

A “bladder wall” flare occurs when the bladder wall has been irritated, most often by eating or drinking an acidic or caffeinated food or beverage. While some patients report pain within 30 minutes of eating an offending food, most are felt at night, making sleep almost impossible.

A “pelvic floor” flare occurs when the pelvic floor muscles get tight or are traumatized, often during or after long car rides or intimacy. Stress is also a powerful trigger for this type of flare because patients may be sub-consciously tightening pelvic floor muscles.

The good news is that many flares are preventable by following simple self-help strategies (i.e. diet modification, muscle relaxation and other Step One Treatments).

Learn more in the ICN Flare Management Center


September 27, 2014
by icnjill

Daily Fact #27 – Pain of IC

Pain of IC Can Be Severe

While pain is not always a symptom in IC, for the men and women who have it, it can be agonizing, as if razors are cutting our bladders. Yet, for years, patients have been told that it’s all in their heads and that they just need to ignore the pain. Hogwash!! Would you deny a cancer patient pain care?? Of course not. The pain of interstitial cystitis has been rated equivalent to cancer pain and deserves urgent, compassionate treatment.

Each patient faces three challenges:

(1) They must learn to differentiate the type of flare/pain they are having. (i.e. the bladder wall vs the pelvic floor vs. other organs in the pelvis). Bladder wall flares are treated very differently than pelvic floor flares.

(2) They must learn to catch and treat flare/pain as early as possible, ideally with self-help strategies, OTC products and, if needed, more aggressive pain therapies.

(3) They must try to prevent future bladder and pelvic floor flares by following key self-help strategies (i.e. diet modification, etc)

Learn how in the ICN’s Bladder & Pelvic Pain Resource Center!


September 26, 2014
by icnjill

Daily Fact #26 – Wine and IC/BPS

IC Awareness Daily Fact #26

Is it safe to drink wine when you have interstitial cystitis (IC), bladder pain syndrome (BPS) or chronic prostatitis? If you’re actively in a flare or have Hunner’s lesions, drinking wine would be foolish because alcohol on any tender tissue or open wound would sting. However, when your urinary symptoms have improved, it may be worth trying a low acid, low alcohol wine.

In 2009, we surveyed more than 500 patients who shared with us their experience with wine. 21% reported that they could drink wine without any bladder irritation. 31% reported that they sometimes drink wine without being worse for wear. On the other hand, 48% of patients reported that wine always irritated their bladders.

White wines were better tolerated than reds due, most likely due to the extra added histamines found in red wine. Wines free from sulfites and/or that were organic were easier on the bladder.

If you’re a white wine drinker, we suggest: Chardonnay, Pinot Grigio, Riesling, Sauvignon Blanc.

If you’re a red wine drinker, the clear favorite was Merlot.

Patients also suggested having wine on the rocks, and/or following it with a large glass of water to reduce the overall irritation. Some patients have also used Prelief to reduce the overall acid content.



Free Download – Osborne J. Schmidt J. Wine, Beer & Spirits: Do They Trigger IC Flares? IC Optimist Summer/Fall 2010. 15-18


September 25, 2014
by icnjill

Daily Fact #25 – Beer and Interstitial Cystitis

IC Awareness Month Daily Fact #25 - Beer and Interstitial Cystitis

Is it safe to drink beer when you have interstitial cystitis (IC) or bladder pain syndrome (BPS)? In our 2009 Wine, Beer & Spirits Survey, lighter lager, american ales, ambers, pilsners and pale ales were the least bothersome beers, such as Miller Genuine Draft Light and Blue Moon Pale ales. The most irritating beers were the darker english stouts and dark brown ales.

Beer ratings in Interstitial Cystitis Alcohol Survey

Obviously, if your bladder is flaring and your symptoms are very active, it’s best to avoid all alcohol until your symptoms improve. If you’d like to try it again, start with a light lager and then follow that drink with water to dilute the effect in your urine.


Free Download – Osborne J. Schmidt J. Wine, Beer & Spirits: Do They Trigger IC Flares? IC Optimist Summer/Fall 2010. 15-18