ICN E-Newsletter - November 2017

Sponsored by: Beaumont Urology - Desert Harvest Aloe - Vista Urology - Prelief - CystaQ

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We Are So Grateful For Your Kindness, Support & Encouragement


It's that time of year when we give thanks for our blessings. I am so blessed and so grateful for you, our ICN members and readers! Every day, I wake up excited about how we can help you with your IC. From answering your many questions, creating new content, conducting IC research to promoting IC Awareness, I love my job.

This year has been hard. So many of you reached out with love, kindness, funny cards and support during my cancer surgery last Spring. You lifted me up at a time when I was terrified for my life. You gave me hope, strength and, most of all, a reason to get back to work. (They got it all!)

Then, last month, we had a firestorm here in Santa Rosa CA which, in just a few hours, burned thousands of homes and businesses. My home had fires approach from the North and East, levelling neighborhoods just a five minute drive away. We were evacuated twice. Without power, internet, cell phones, regular phones, the ICN corporate office was shut down for almost three weeks. Again, your calls, notes and offers of a safe place to stay were so touching and heartfelt. I am so incredibly grateful for your kindness and support. Words just can't express how much that meant to us all.

From our families to yours, THANK YOU! May the holiday season bring you comfort, love, kindness and the laughter of family and friends!

- Jill, Janice, Donna, Heather, Jenna & Christina - the ICN Family


Feature Story - When Bladder Treatments Don't Work For IC/BPS: It's Time For A New Appraoch


Clinging To Old Treatments For IC/BPS Could Hold You Back

If you had been diagnosed with IC/BPS forty years ago, odds are you would have been prescribed antibiotics, given urethral dilations and/or referred to a psychiatrist under the mistaken assumption that IC was all in your heads. Twenty years ago, that same patient might have been given harsh bladder instillations (i.e. chlorpactin, silver nitrate or DMSO) and/or Elmiron (approved in 1996) . Ten years ago, they might have been given the IC diet, prescribed overactive bladder medications and perhaps given a trial of Interstim. But did they work? Did they really work? The answer, of course, is no, not for everyone. Even Elmiron & DMSO, the only FDA approved treatments for IC, have conflicting research studies and success rates. Why do some patients not respond to treatments?

Read More


An Essential Holiday Survival Tip


How To Stop A Diet Induced Flare - When Your Holiday Meal Comes Back To Haunt You!

You couldn’t resist. You had been so good. You avoided the cranberry sauce. Said no to the wine. You ate really well until dessert arrived. Grandma's irresistable chocolate cake started calling your name and wouldn't let go. Wanting to show her that you appreciated her cake (right?), you indulged and enjoyed every bite. Hours later your bladder starts to scream. If you’re like most patients who are diet sensitive due to Hunner’s lesions or a sensitive bladder wall, the holidays present with many opportunities to eat foods which later come back to haunt you with a wicked IC flare. If you’ve imbibed in a cocktail, enjoyed some cranberry sauce or fell for that slice of decadent chocolate cake, here are some strategies that you can use to nip this flare in the bud. Read more!


IC Awareness Month Poster Contest Winner

First Place - Erin Dryburgh

Due to the hypervigilance triggered by the opiate crisis, more and more legitimate pain patients have been accused of being drug addicts by nurses and doctors unfamiliar with their unique patient history and medical condition. This is particularly true for patients who have worked with care providers for many years who then retire and/or relocate. Often left with no referrals, the IC patient then must call new urologists and/or pain clinics seeking care. It’s not an easy journey and that patients worst fear is to be accused of being a drug addict and seeking pain medication. It happens, often. This poster captures that frustration and poignancy. We have done nothing wrong. We are using our medication correctly. We are trying to reduce our pain and suffering responsibly. Is it unreasonable to ask for help? Of course not.

See the Second & Third Place Winners Here!


IC Awareness Month Meme Contest Winner

First Place: J. Gosewehr

Comments: A meme is supposed to be entertaining, sharable, poignant and ideally educational. Of course, cats are gold when it comes to sharing. This picture is not only adorable but it tugs your heart too. Yes, my mom does use the people box a lot!

See the other winnners and entries here! There a LOT of GREAT MEMES!


ICN Survey Center


New Survey Studies The Impact of Diagnostic Delays In Women With IC/BPS.

One of the things that we love about our ICN readers is their ability to help further the IC research movement. We have a new survey that we hope you will participate in being conducted from the University of California. Researcher Katherine Volpe MD is trying to understand how delays in the diagnosis of IC affect us. Was it difficult to find care? Were you struggling to find someone who believed that you were suffering? Please share your experience and history by participating in her survey today!

Read More


Current Clinical Trials

Global Study Seeks Men & Women With IC/BPS in USA, Canada & Europe

Women and men are needed to participate in a clinical research study of an oral investigational drug for interstitial cystitis/bladder pain syndrome (IC/BPS). The purpose of the LEADERSHIP 301 Trial is to learn if an investigational drug, AQX-1125, may reduce the bladder pain of interstitial cystitis/bladder pain syndrome (IC/BPS) and relieve other symptoms such as urinary urgency and frequency. The study drug is a new type of medication that may help reduce inflammation in the bladder.

Study Locations:

USA – Alabama, Arizona, California, Connecticut, Georgia, Indiana, Iowa, Louisiana, Maryland, Massachusetts, Michigan, Nevada, New Jersey, New Mexico, New York, North Carolina, Ohio, Oklahoma, Pennsylvania, South Carolina, Tennessee, Texas, Virginia, Washington, Wisconsin

Canada – British Columbia, Ontario, Quebec

Europe – Belgium, Czech Republic, Denmark, Hungary, Latvia, Netherlands, Poland, Romania, Spain, United Kingdom

Read more!



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24/7 ICN Patient Support Forum

ICN Patient Support Forum


If you've never met anyone else with IC? If you're feeling alone in your struggle with IC? If you're struggling to figure out why you're flaring? You are not alone! We're here and we can help! The IC Network Support Forum provides hope, comfort and encouragement to patients around the world! We welcome you with open arms. In our forum, you can ask questions, help other patients and, most of all, make friends.

Current Forum Stats

Discussion Threads: 81,133 - Posts: 640,393 - Active Members: 46,269


New ICN Memberships

ICN Gratitude Sale - 25% Selected Items

25% off all CD's & DVD's

New Dawn Pilates For Pelvic Pain

Healing Pelvic & Abdominal Pain

25% OFF all Pumpkin Spice Tea

Yes, it's that time of year again. Trees are almost finished dropping their leaves here in California and winter is beckoning. It brings back our favorite flavors - all things pumpkin including this fabulous Pumpkin Spice Herbal Tea from Harney & Sons. We like this tea for two reasons. It's very flavorful. If you love and miss your pumpkin spice latte, try making a cup of tea with this and add some milk. It's divine. Of all the fall teas that I've tried, this is my new favorite! It hasn't flared my bladder yet and I've made some really strong cups! Try it, you might like it too! Learn more!

25% OFF Pumpkin Spice White Hot Chocolate

Made from only the finest ingredients, Stephen's Gourmet Pumpkin Spice WHITE Hot Chocolate is quite simply the richest, creamiest, most flavorful cocoa you have ever tasted. Gluten free and a perfect bladder friendly hot drink on a frosty winter afternoon! We hope you'll love it. We also carry White Hot Chocolate as well! Learn more!

OTC Neutraceuticals (Step One Interventions)



Cysto Renew


Desert Harvest Aloe

OTC Flare Relief Products


AZO Urinary Pain Relief Tablets

GingerBee Heating Pad