Interstitial Cystitis Network Newsletter

ICN E-Newsletter - October 2016

Sponsored by: Allergan (LiNKA) - Javacid - Beaumont Urology - Desert Harvest Aloe - Cysto Renew - Prelief - Acid Zap - CystaQ

Quick Links: Join the ICN - 24/7 ICN Support Forum - Find A Specialist - Make A Donation

Trouble reading this issue? Read it on the web here!


News & Feature Stories

New Chronic Pain Terminology Guidelines Released

A New Chronic Pelvic Pain Terminology Guide Adds Clarity For IC

Earlier this year, the International Continence Society released new terminology standards to aid in the diagnosis of ALL chronic pelvic pain disorders, including those that affect the bladder(1). This is a powerful document that will help physicians and patients identify and classify potential sources of their pelvic pain. Read it now!

New IC Treatments Currently In the Pipeline

Patients constantly ask "Is there anything new?" Yes, Virginia, IC research is alive and well with teams from around the world exploring new treatments. Here's our review of the most promising projects in the IC Pipeline! Read it now!

A Proposed Four Step IC/BPS Treatment Protocol For The Youngest Patients

An interview with Dr. Robert Evans about the care of the youngest patients with interstitial cystitis - children and teens. He shares his treatment plan by age group. Read it now!

European IC Treatment: A Holistic Approach Should Be Considered

The European approach to the treatment of IC/BPS is very different from America not only in their use of medications, but also in their assessment and empowerment (or lack thereof) of the chronically ill patient. Read it now!


Research & Clinical Trials

More than 30% of Interstim Patients Require Revision Surgeries

Three research studies suggest that there is a substantial risk of unexpected revision surgeries for patients doing sacral neuromodulation (aka Interstim). On the other hand, risks for post tibial nerve stimulation (aka Urgent PC) appear to be substantially less. Read it now!

LiNKA Study For Hunner's Lesions - Patient Recruitment To End Later This Fall

Do you or someone you know suffer from IC with Hunner's Lesions? If so, you are familiar with the pain that can make it difficult to enjoy life. Allergan, Inc. ( is enrolling participants for a research study investigating a drug device to evaluate the safety and effectiveness of a continuous release of lidocaine inserted into the bladder compared with placebo for treating the symptoms of IC with Hunner's Lesions in female patients. All patients will have the opportunity to receive the active study drug if they request and satisfy the criteria. Read More!

My Fibroid Study

If you experience heavy periods related to uterine fibroids, you may be eligible to participate in a clinical research study. Qualified participants will receive study-related care and investigational medication at no cost. Read more!

MAPP Research Network Study Seeks People with IC/BPS or CP/CPPS –

Do you or someone you know suffer from Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) or Chronic Prostatitis/Chronic Pelvic Pain Syndrome (CPPS)? Northwestern University's Feinberg School of Medicine is looking for men and women who have IC/BPS and men who have CPPS to participate in a research study. Read more!

IC Awareness Month Contest Winners Announced

Poster Contest First Prize - Lynn Dryburgh


IC Awareness Month Poster Contest Winner

See All Poster Contest Winners


Meme Contest First Prize- Stephanie Patterson


IC Awareness Month Meme Contest Winner


See All The Meme Contest Winners

#lifewithic Twitter Contest

FIRST PLACE - @Bronti01 - "When you're the youngest person at the urologist office #lifewithic"

SECOND PLACE - @CgColleen - "How many times will I visit the restroom during a one hour flight? At least once. Maybe twice. Maybe three times. #lifewithic"

THIRD PLACE - @AlysonWnderlnd - "When I get to heaven the first thing I'm ordering is a glass of lemonade with chocolate, lasagne, hot wings and champagne. #lifewithIC."


The IC Diet - Simply Delicious: Low Acid Eating Made Simple

IC Diet Project - Butternut Squash Soup

IC Diet Project - The Flavors of Fall

There's something about the Fall season that inspires even reluctant cooks to venture into the kitchen to take a stab at making something seasonal. From pumpkin bread to butternut squash soup, the flavors of fall are rich, healthy and, thankfully, very bladder friendly! Winter squash is also packed with nutrients. A cup of butternut squash contains almost half the daily amount of Vitamin C, nearly 300% of Vitamin A, as well as B-6, iron, calcium and magnesium. And, yes, that's Vitamin C that won't feel like battery acid in a tender IC bladder. Read more!

Pumpkin Spice Lovers Rejoice - 10% Off Sale (See below)

Pumpkin Spice White Hot ChocolateIf your bladder is not ready for a real pumpkin spice latte, there are two alternatives that we absolutely LOVE LOVE LOVE!


Introducing Javacid - Natural Coffee Acid Neutralizer

Industry News

Popular IC Treatment Price Drops While Another Now Under Mylan Pharma Control

It's not every day that you get a message from a company announcing that a price for a vital IC therapy has gone down but, believe it or not, it happened! Hep-Lido-A, the most popular bladder instillation in use for the treatment of interstitial cystitis, now costs just $25 per treatment. It was originally $90 per dose. That's roughly an 80% decrease in price. Read it now!


Consumer Awareness

Popular Urology Drug, Hyoscyamine, Recalled

Hyoscyamine sulfate, a popular drug use for urology patients struggling with incontinence, has been recalled by Virtus Pharmaceuticals. This recall is the result of irregular medication levels in the medication which can give patients either too much (super potent) or too little (sub potent) medication. Read more!


New "Living With IC" Video

IC Treatments in 2016 - Do you know the six steps of treatment?

New ICN Video - IC Treatments in 2016Are you confused about your IC treatment options? Do you believe that you've tried everything? Not sure what you should try next? ICN President Jill Osborne reviews the AUA Six Steps of Treatment for Interstitial Cystitis. This simple approach to IC treatment puts your safety first and works for many! Watch this video for a basic introduction to your IC treatment options. Let us know what you think! @icnetwork @icnjill #icsubtypes

Watch it On YouTube

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: 79,475 - Posts: 629,728 - Active Members: 42,810


What's New In the ICN Shop! - - 800.928.7496



Low Acid Coffees

Coffee is always a controversial topic in the IC community. Yes, many patients simply cannot drink it, especially those with Hunner's lesions or severe bladder irritation. However, patients with mild symptoms or those struggling more with pelvic floor muscle tension rather than bladder irritation, may often tolerate them well! Tyler's Organic Coffee is the first acid free coffee with a pH of 7. Simpatico receives outstanding reviews for its smooth, rich flavor and low acid levels! If you're ready to give coffee a try again (and don't try too soon), we suggest trying either brand!



Tyler's No Acid Decaf Coffee

Tyler's NO ACID Coffee Decaf


Tyler's No Acid Regular Coffee

Tyler's NO ACID Coffee Regular

Simpatico Low Acid Arabica Coffee Decaf

Simpatico Low Acid Coffee Decaf

Simpatico Low Acid Arabica Regular

Simpatico Low Acid Coffee Regular

Herbal Teas & White Hot Chocolate


Pumpkin Spice White HOt Chocolate

Pumpkin Spice White Hot Chocolate


Stephen's White Hot Chocolate

White Hot Chocolate

Harney's Pumpkin Spice Tea

Harney's Pumpkin Spice Tea - 20 sachets

Harney's Pumpkin Spice Tea

Harney's Pumpkin Spice Tea - 50 sachets

Desert Harvest RELEVEUM For Vulva & Perineal & Shingles Pain

ReleveumIf you struggle with vulvodynia and/or perineal pain, Desert Harvest Reléveum is worth checking out. It's a 96% natural skin care cream that contains 4% Lidocaine cream and certified organic Aloe Vera gel to help with the irritation, itching and burning associated with Vulvodynia, and other perineum irritations. Contains no irritating parabens or chemical additives and contains a unique variety of natural botanicals like Calendula and chamomile to enhance the soothing and healing properties of the Reléveum compound.

Learn more!

Mama Strut Reusable Hot & Cold Packs

New in July 2016 - We love finding new products that can help patients who suffer with pelvic pain. We found these earlier this spring and fell in love! Mama Strut reusable hot and cold packs are perfect for patients who need to comfort their "nether" region. Shaped like a menstrual pad, they fit comfortably in the crotch area and may help soothe rectal pain, vulvar pain and pelvic floor muscle tenderness. They can be frozen for cold or heated in the microwave and contain instructions on the back of the pad.Hot & Cold Packs

IMPORTANT - DO NOT place frozen or hot pack directly on your skin. This, like all other hot or cold products, should be wrapped with a small towel first to protect the especially tender skin in your crotch area.

Each package contains two pads. Dimensions: 7" long by 2.5" wide

Learn more!

Perineal Wash Bottles - Back In Stock

A clear, empty wash bottle to be filled with water. Why? This is one of the easiest, simplest ways to reduce burning on the sensitive tissues of the urethra, vulva, etc. Just $2.99. Learn more!

Best Sellers


Acid Zap

Acid Zap to enjoy some of the riskier summer foods!


MultiRight Low Acid MultiVitamin
MultiRight Low Acid MultiVitamin

Coming in later this week!

Luvena Prebiotic Vaginal Moisturizer
Luvena Vaginal Moisturizer
Feminine Wipes, Lubricants

Healing the Pain "Down There"

Healing The Pain "Down There" DVD Program

Heathers Acacia Fiber
Acacia fiber to stay regular and reduce constipation

OTC Neutraceuticals (Step One Interventions)



Cysta Renew


Desert Harvest Aloe