Interstitial Cystitis Network Newsletter

This Week on the ICN! October 24, 2014

Sponsored by: CystaQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - PainShieldMD

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IC Treatment Guidelines Updated

The American Urological Association (AUA) released a new update to their 2011 Guideline on the Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). The original guidelines included research studies up through 2009. This new revision includes research studies through 2013.

Developed as a treatment guide and planning tool, the 2011 guidelines introduced a six step treatment plan. Newly diagnosed patients generally begin with strategies outlined in Step One and then, if those strategies do not bring symptom relief, are advised to try Step Two treatments and so forth


A. Comprehensive Physical Therapy Encouraged

In Step Two, Physical Therapy was suggested for patients who present with pelvic floor tenderness with the highest review possible, Grade A. It states:

Appropriate manual physical therapy techniques (e.g., maneuvers that resolve pelvic, abdominal and/or hip muscular trigger points, lengthen muscle contractures, and release painful scars and other connective tissue restrictions), if appropriately-trained clinicians are available, should be offered to patients who present with pelvic floor tenderness. Pelvic floor strengthening exercises (e.g., Kegel exercises) should be avoided. Standard (Evidence Strength Grade A).

B. Botox Therapy Rating Improved!

Botox A was reclassified from Step Five to Step Four. New research emerged which showed that using BotoxA at a lower dosage (from 200u to 100u) substantially reduced the risk of a troublesome complication, the need for self-catheterization. If a Botox treatment silences the nerves which control urination, a patient may be forced to self- catheterize until the effect wears off, often for months. The 100u dose was less likely to do so. If a patient is unable to self catheterize, this therapy is not recommended.

Read more about it here!


ICN Clinical Trial & Research Update

Study Seeks Men and Women Who Have Failed Previous IC/BPS Therapies

If you are suffering from Interstitial Cystitis (Bladder Pain Syndrome) and have had three or more failed therapies, you may be a candidate for "Cyclosporine in Interstitial Cystitis" study at the Cleveland Clinic. Several research studies have been published showing that Cyclosporine can improve the symptoms of Interstitial Cystitis. Learn more!

Bladder Pain Study Seeks Women With Moderate to Severe IC Pain

A research study is now enrolling women between the ages of 18 and 75 who have IC/BPS. This study will assess the effectiveness of an oral investigational study medicine (AQX-1125) to see if it will reduce the moderate to severe IC/BPS pain being experienced by study participants. Learn more!

CDMRP IC Research Funding Update

The first round of research reviews were completed September in the Congressionally Directed Medical Research Program (CDRMP) funded by the US Army. For the fourth year, ICN President Jill Osborne is proudly serving as the Consumer Reviewer (patient advocate) on the Interstitial Cystitis research committee. Her job is to represent the collective views of survivors, patients, family members, and persons affected by and at risk for certain conditions, diseases or injuries. She reads and evaluates research study applications for relevance to the IC community's needs and concerns. She is a full member of the review panel, with full voting member status.

Two large IC studies of importance have been funded through CDMRP in the past few years. In Fiscal Year 2012, Dr. Sonia Planey received a grant of $945,142 in 2012 to develop a new, rapid urine test for IC. In Fiscal Year 2011, Dr. Michael Chancellor received $1.644 million to study a potential new treatment, the use of liposomes to deliver an anti-nerve growth factor into the bladder wall. We hope that yet another study will be funded for 2014!


Upcoming Patient Events - Pelvic Pain Facebook Chat

If you haven't heard yet about the Bridge For Pelvic Pain, take a moment and check out their website! This new non-profit organization is based in Colorado and will be providing education, resources and support for chronic pelvic and sexual pain conditions, including IC.

Dr. Elliot Lander (known for his stem cell research with IC) and physical therapist Karen Liberi will be featured in a Facebook Chat on Pelvic Pain, sponsored by the Pain Pathways magazine! Learn how to participate here!

Find them on the web - Bridge For Pelvic Pain website

Find them on Facebook - Bridge For Pelvic Pain Facebook Page



IC Awareness Poster Contest Winners!

IC Awareness Month Poster Contest Winner 2014FIRST PLACE - Christy Keyes

Christy Keyes won 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!

SECOND PLACE - Becca Keyes

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!

THIRD PLACE - Addy Wilson

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.

See the other winning pictures here!


IC Awareness Daily Facts - Please SHARE our PINS!

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One of the highlights of this years campaign is a 30 piece educational campaign that was shared thousands of times across the web. From the dangers of smoking and how it can contribute to bladder symptoms in children to the often desperate need for pain care, we chose topics that were directly relevant to patients today!

IC Awareness Daily Fact #30 - Honoring Those We Have Lost

#30 - With gratitude, we honor those who have left their mark on the IC movement

#29 - Smoking is a well known bladder irritant and the leading cause of bladder cancer

#28 - An IC Flare can happen suddenly and without warning. Diet is the #1 trigger


IC Awareness Daily Fact #27 - The Pain of IC

#27 - The pain of IC can be so severe that it compares to cancer pain

#26 - Wine and IC

#25 - Beer and IC

#24 - Pregnancy and IC

#23 - Cranberry juice is an acid bomb in an IC bladder!

#22 - Botox and IC

#21 - Anxiety and IC

#20 - Exercise and IC

#19 - Drug Assistance Programs For the Financially Limited

#18 - Stress and IC

#17 - Men and IC

#16 - IC and Sleep

IC Awareness Daily Fact #15 - IC and Disability Benefits

#15 - Disability Benefits and IC

#14 - Surgery and IC

#13 - The IC & IBS Connection

#12 - Hunner's Lesions

#11 - Intimacy and IC

IC Awareness Daily Fact #10 - Children and IC

#10 - Children and IC

#9 - Patients Often Struggle To Find Doctors

#8 - Unnecessary Hysterectomy and IC

#7 - Impact of IC on Family & Friendships

#6 - Diet Modification and IC

#5 - Ketamine Cystitis

#4 - Pelvic Floor Dysfunction and IC

#3 - IC Treatments - Six Step Treatment Plan

#2 - The IC Bladder

#1 - Millions of Men, Women and Children have IC


Consumer Alerts - Hospira Lidocaine Recall

Lidocaine Recall

If you do home heparin or rescue instillations that use lidocaine, please check your bottle to determine if you are using lidocaine produced by Hospira. On October 17, 2014. they announced a voluntary recall of one lot of 1% lidocaine HCL due to the presence of particulate matter, specifically a human hair found in one bottle. This lot (NDC 0409-4279-02; Lot 40-316-DK, Expiry 1APRIL2016) was distributed nationwide from May 2014 through June 2014. Learn more here!

Always Menstrual Pads Found To Emit Toxic Chemicals, including Carcinogens

If you've struggled with irritation after wearing an Always menstrual pad, you'll be stunned by the results of a new research study which found that scented and unscented Always pads emit a variety of toxic chemicals, including three carcinogens (styrene, chloroethane and chloroform) and, shockingly, chloromethane, a reproductive toxicant. Learn more and join the "Detox The Box" campaign here!

Given this data, we have to recommend, yet again, chlorine free pads, such as those produced by Seventh Generation!


Interesting Blogs, Articles & Videos


ICN Survey Center - Help Our Research TODAY!


Clinic News!

New Boston PT Clinic To Open This Spring!

Patients in the Boston area will have a fabulous new pelvic pain resource beginning this Spring when the fabulous team at the Pelvic Health & Rehabilitation Center open their first offices on the East Coast. Elizabeth Rummer MSPT is heading up the new clinic and they will be accepting new patients in just a few months! Learn more

Pediatric Pelvic Floor Physical Therapy Now Available

As we've lamented for years, very few clinicians have taken a strong interest in treating IC and/or chronic pelvic pain in children. The Pelvic Health & Rehabilitation Center is now offering a free phone consult for parents of children who might benefit from pelvic floor physical therapy. Learn more here!



What's New In the ICN Shop! - 800.928.7496 or 707.433.0413

Bladder & Prostate Friendly Chair Cushions Back In Stock

After a two month outage while new foam was rated and selected, the ICN's Bladder & Prostate Friendly Chair Cushions are back in stock! If you struggle with prostate, urethral, rectal or vulvar discomfort when you sit, you might find this cushion life saving! Custom made for the ICN with special foam, it has a long groove down the middle which reduces pressure on those sensitive bits making sitting at work, home or in a car much more tolerable. All four sizes are currently available but they'll sell out quickly. Get them while you can!

Learn more here!

OTC Pain Relief - CYSTEX

CystexIf you're looking for some OTC pain relief and AZO just hasn't worked for you, it might be worth trying Cystex Plus, a urinary pain reliever that uses a different ingredient, Sodium Salicylate, to control pain!

This OTC urinary pain reliever has a dual action formula that not only eases bladder pain and burning but it also has an antibacterial (methenamine) to help fight infection.

Please review the warnings carefully and talk with your doctor if you have any questions or concerns before use!

Learn more!

OTC Neutraceuticals (Step One Interventions)



Cysta Renew


Desert Harvest Aloe

The Proactive Patient: Managing IC & Related Conditions

Written by Gaye & Andrew Sandler, the newest book on IC is a comprehensive resource guide that will help patients, young and old, as they learn to manage their IC symptoms, reduce pain and enjoy intimacy again.

Every chapter provides the reader (and their family members) with tips and strategies to ease discomfort, control flares and better manage their symptoms. Also includes chapters on hormones, pregnancy, midlife, sexuality, chemical sensitivity and, as well as, tips for spouses of IC patients

Learn more!

Perfect Fall Drinks Perfect For Our Tender Bladders!

Looking for the almost perfect IC friendly chocolate drink? We love this brand, Stephen's Gourmet White Hot Chocolate, for their quality, flavor and very low cost. Want some fall spices?? Try the Pumpkin Spice White Hot Chocolate or, if you're a cheesecake fan, you'll love their Raspberry Cheesecake White Hot Chocolate!!

White Hot Chocolate

Pumpkin Spice

Raspberry Cheesecake



Cinnamon Vanilla Cinnamon Apple Chamomile Maple Apple Cider

MultiRight Low Acid Multivitamin

MultiRight Low Acid MultiVitaminMultiRight, the low-acid pH balanced multivitamin, is now back in stock. It was unavailable this Spring and part of Summer while the formula was adjusted to make it yet more bladder friendly. Now it's pH balanced, which means that it's pH neutral.

What does that mean?? it's even LESS ACIDIC and MORE BLADDER FRIENDLY than most other vitamins on the market. If you've had flares from Centrum's and One A Day's, then you know exactly what we're talking about.

MultiRight has been tried by hundreds with sensitive bladders and most tolerated it well. The few that didn't appear to have more inflamed bladders, often with untreated Hunner's Ulcers. Unfortunately, we can't tell you if your bladder will tolerate it well. If, for example, you're in an IC flare or bladder is extremely sensitive to foods, you might want to try a half pill first and/or wait until your flare calms down.

As a dietary supplement, take one tablet daily, preferably with a meal or as directed by your physician. It is NOT formulated for use in children. Buy Now

European Gourmet Bakery (Formerly Dr. Oetkers) Organic Baking Mixes

The Dr. Oetker line of baking mixes has been one of the most popular product lines for IC patients because they contain so few artificial ingredients! European Gourmet Bakery bought the Dr. Oetker's line in early 2014 thus the new brand name. But, rest assured, it's the same great recipes. Apple Cinnamon Muffin Mix - Oatmeal Muffin Min - Corn Muffin Mix - Vanilla Cake Mix - Vanilla Icing