ICN E-Newsletter - October 2016
Trouble reading this issue? Read it on the web here!
News & Feature Stories
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. (http://www.allergan.com/home) 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
Meme Contest First Prize- Stephanie Patterson
#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 - 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!
- Butternut Squash Pear Soup
- Butternut Squash Pasta Sauce
- Pumpkin Apple Streusel Muffins
- Pumpkin Drop Cookies With Cream Cheese Frosting
Pumpkin Spice Lovers Rejoice - 10% Off Sale (See below)
- Pumpkin Spice Rooibos Tea from Harney & Sons! I drink several cups throughout the day and its never bothered my bladder. It's as close as you can get to a pumpkin spice latte but without the coffee! Learn more!
- Pumpkin Spice White Hot Chocolate - This is a popular favorite among IC patients! White hot chocolate also available!
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!
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?
Are 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
24/7 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.
- Share Your Patient Story
- How IC Is Diagnosed
- Treatment Options
- The IC Diet
- Self-Help For IC
- Managing IC Flares
- Health Insurance & Disability Benefits
- Related Conditions to IC
- Social Life
- Meet Others by Location
- Spirituality, Faith & Positivity
Current Forum Stats
Discussion Threads: 79,475 - Posts: 629,728 - Active Members: 42,810
What's New In the ICN Shop! - www.icnsales.com - 800.928.7496
10% ALL HOT DRINKS
COUPON CODE: FALLDRINKS2016
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!
Herbal Teas & White Hot Chocolate
Desert Harvest RELEVEUM For Vulva & Perineal & Shingles Pain
If 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.
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.
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
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!
Coming in later this week!
Luvena Vaginal Moisturizer
Feminine Wipes, Lubricants
Acacia fiber to stay regular and reduce constipation
OTC Neutraceuticals (Step One Interventions)