Interstitial Cystitis Network Newsletter

November 2013

Sponsored by: Prelief - CystaQ - BladderQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - Squatty Potty - PainShieldMD

Trouble reading this e-mail?? Read it online here!

ICN Offers New Content & Information Centers

In case you haven't seen our website recently, it's undergone a dramatic transformation. In addition to a new platform, we've also been updating all of our interstitial cystitis information. NOT an easy task mind you, but the new site is looking great. Please come check out our new IC Information Center, complete with more than a dozen chapters of information on the history of IC, diagnosis, treatment, self-help, managing IC flares and more!

We're also adding information on two of the related conditions to IC. We've just launched our Pelvic Floor Dysfunction Information Center and an Overactive Bladder Information Center (More will follow!)


Featured Story - An Interview with Dr. Robert Echenberg

After three decades as a traditional gynecologist, Robert Echenberg MD (Institute for Women In Pain, Bethlehem PA) was given an usual challenge, to develop a chronic pelvic pain program that utilized non-surgical therapies. Little did he know that he would lead a revolution that is changing the way IC and pelvic pain are considered.

Remarkably humble, he freely admits that he and his colleagues knew little about pelvic pain. “When a patient came to our clinic suffering from long-term pelvic pain, we looked for typically Gyn causes, such as endometriosis, fibroids, cysts or sexually transmitted diseases” he said, “Many of these patients had gone through multiple, surgical tests and therapies: ultrasounds, MRI’s, colonoscopies, cystoscopies, laparoscopies and even hysterectomy at a very young age, yet they still would continue with the worst pain.”

He’s now helping to define a new pelvic pain syndrome, Complex Abdominal Pelvic Pain Syndrome (CAPPS), that will have many patients say “That’s me! That’s my life.” If you’ve suffered from a variety of ills associated with the bladder, the bowel, and the reproductive tract, this may explain the connection. It also adds new context for patients who thought that they were having recurring UTI’s or yeast infections, only to be told that no infection was found. Read the interview here!


Latest Articles on the ICN


Recent, Topical IC Videos, Webcasts & Blogs


Prostatitis Patients Show Diet Sensitivity Too

Men struggling with prostatitis should take note of this important study, the first of its kind demonstrating that prostate and pelvic pain patients struggle with more intense symptoms after consuming certain foods and beverages, particularly spicy and carbonated foods.

A total of 95 men with prostatitis completed a survey that assessed their reaction, if any, to 176 foods and beverages. 47.4% reported that their symptoms worsened. The worst offenders were spicy foods, coffee, hot peppers, alcoholic beverages, tea and chili, the foods also found to exacerbate symptoms of interstitial cystitis/ bladder pain syndrome. Of note are the hot spices, such as chili. Caffeinated foods, such as coffees and teas, were found troublesome. Lastly, alcohol was found to be irritating, demonstrating very similar results to a study the ICN conducted several years ago.

Several foods were found to help alleviate symptoms. Docusate, psyllium and polycarbophil, which help maintain bowel function, received high scores. Water, of course, helps dilute urine thus reducing the quantity of irritants. as well as supporting bowel function. Herbal teas (chamomile, peppermint) are known to be more calming and soothing to the urinary tract.

Source: Herati As, et al. Effects of Foods and Beverages on the Symptoms of Chronic Prostatitis/Chronic Pelvic Pain Syndrome. Urology. 2013 Aug 23.

IC & Pelvic Pain Clinical Trials

Clinical trials are a vital part of the search for a cure for IC. Not only do they allow patients to participate in cutting edge research, but they also can help patients receive treatment who may not have access due to a lack of health insurance. There are 30 studies currently underway as listed at!

Rare Research Study For Patients With Hunner's Ulcers & Lesions

Last year, we shared the results of the first formal study of LiRIS in which six out of seven patients with this most severe form of IC experienced a "resolution of Hunner's lesions"  Early this fall, Taris Biomedical launched a new clinical trial to develop more data on LiRIS as, hopefully, a fast track treatment for ulcers and lesions on the bladder. The study is being conducted in Michigan. Learn more about it here!

accessfall2013-200More Studies:


IC Awareness Month Poster Contest Winners

First Place - Jennifer Williams $100 Gift Certificate

Jennifer Williams has created an iconic image absolutely perfect for use in an annual awareness campaign. We love the simple yet powerful imagery. It includes men and women, the hands placed over the bladder and that simple tear drop is a powerful message.

Second Place - Audrey Takeshta & Tish Alie $75 Gift Certificates

Audrey’s original watercolor is absolutely gorgeous, beautifully using color and image to remind every IC patient that they are beautiful, that they are strong and, most importantly, that IC cannot break you!

Tish Alie’s poster is POWERFUL! It catches the eye and makes the reader want to get up close and learn more about it. Tears evoke a powerful message, that we all should stop and ask “what can we do to make this better?” And, thankfully, more and more people are doing so!


Third Place - Carolyn Rumsey & Lynn Dryburgh $50 Gift Certificates

Carolyn's creative poster could work perfectly in any doctors office. It’s funny yet enlightening and, of course, grounded in the daily symptoms of an IC patient. It’s makes you laugh yet, at the end, hits you with the powerful punch that IC patients also struggle with profound loneliness at times.

Lynn Dryburgh entry was made in honor of her daughter, who suffers from IC. This is the first poster we’ve had entered which raises awareness about the needs of children who struggle with bladder pain and discomfort. We love the use of several languages on the poster. This could work beautifully in an educational campaign with school nursing staff and educators!


Facebook Timeline Contest Winners:

FIRST PLACE – Robert Johnson $100 Gift Certificate

We chose Robert’s entry as our grand prize winner because it empowers patients and reminds each and every one of us that we can absolutely make a difference and IC Awareness Month is just one way that they can speak out!!! We also love the fact that it is genderless, supporting both men and women who have IC. Well done Robert!!!

SECOND PLACE – Ana Perez $75 Gift Certificate

The message in this timeline image is critical. We need MORE people to truly understand the suffering, plight and needs of patients who lack access to health care, cannot find physicians to care for them and who often suffer in silence. We love that the hands also hold a heart over the bladder! Lovely, powerful imagery!

Britany Schaible $50 Gift Certificate

Britany’s entry is lovely and will appeal to many who want to share their IC message on their Facebook page. We love the color, the imagery, the message! We love it all!


On Diet & Food

Eating Non Manufactured Foods

One of the consistent themes you’ll see in discussions of the IC diet is the importance of avoiding foods that are heavily processed, preserved or enhanced with chemicals. Why? Not only are some of these flavorings and preservatives potentially harmful and carcinogenic, but processed foods are heavily linked with chronic illnesses such as diabetes.

Is there a link with bladder disease as well?? We think it’s possible! There is no better way to nourish your body and create an environment for healing than by eating simple, fresh and ORGANIC vegetables and meats! Chipotle’s new video makes this point perfectly and is worth a watch. It’s one of the most entertaining, beautifully produced and animated videos we’ve ever seen! Watch it here!


Recipe of the Month

Warm Comfort Foods For Fall

Fall is definitely in the air… and the crisp cool weather makes me want to be active outdoors during the day and enjoy warm comforting food in the evening. Fall is ragweed season too, and studies have shown that allergies are common in people with IC. Like many people, I combat the mold spores and ragweed pollen with antihistamines, but since those medications tend to be drying to the system, I find fall is a also a good time to include more fiber in my diet. Like many of us, I have IBS, so I have to be careful of what kind of fiber I include: bran, for instance, is definitely out. I also try to keep well hydrated, so soups for lunch fill the bill perfectly.

There are many delicious and comforting fall foods that are fiber-rich. One of my breakfast favorites is hot oatmeal. My family thinks it’s odd because they know I can’t stand the slippery texture of oatmeal that’s been cooked with water. But on cool fall mornings I do like a bowl of hot oatmeal done this way. Put a quarter-cup of dry Quaker Quick-oats in a bowl, douse it with milk just to cover the oats, and pop it in the microwave for a minute or so. Add a bit more milk if needed. It’s then ready to top with IC-safe condiments that make it a treat.

  • Try a few drops of almond extract, some chopped almonds, and a chopped fresh pear.
  • A dash of cinnamon, a spoonful of maple syrup, and a handful of organic preservative-free raisins.
  • A quarter-cup of fresh blueberries and a dash of nutmeg.
  • A swirl of brown sugar, some sunflower seeds, and a few chopped sulfite-free dates.

Find more Fall recipes here!

Visit the IC Diet Project Blog


IC Resources From The ICN Mail Order Center - (800)928-7496

Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive web site, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!

Order Early For The Holidays!

It's hard to believe that Thanksgiving is just two weeks away and the holidays just six! Wow! This year has just flown by. We always have a run on some of our favorite IC friendly foods and beverages during the holidays so we suggest that you shop early.

Candy - Who says you can't have a treat!

Low Acid Coffees & Flavorings - Perfect for cold, frosty mornings!

Baking Mixes - Fill your home with the scents of baking!

Cookies - Christmas Treats!

Introducing Cysto-Renew

It's always exciting to introduce a new product that has the potential of helping some patients, particularly those who cannot afford traditional treatments and/or lack health insurance. Cysto Renew was developed by Dr. Geo Espinosa and is a unique combination of ingredients designed to help calm the bladder and support healthy functioning of the urinary tract system. Each ingredient contributes to the health of the bladder glycosaminoglycan layer, nitric oxide production, healthy stress response, and normal mast cell production that helps promote a healthy functioning bladder and normal urine frequency. Learn more!

Best Sellers


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