Interstitial Cystitis Network Newsletter

ICN E-Newsletter - August 2017

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


IC Awareness Month Kicks Off

We Refuse To Suffer In Silence - Seeking Compassionate & Humane Pain Care

Every September, IC/BPS patients and organizations around the world gather together to promote interstitial cystitis, bladder pain syndrome and chronic pelvic pain. This year, our campaign is bold and blunt, telling the story of patients who are refused pain treatment with, in some cases, tragic results. Despite decades of research showing that this medical condition is real and treatable, countless patients have been told that their pain was not real and/or “all in their heads.” Some with pain levels as severe as cancer and/or bladders so profoundly damaged that they are bleeding are sent home with no pain care other than an OTC product. This trend has become far more real with the passage of the CDC Guidelines for Chronic Pelvic Pain which has resulted in thousands of chronic pain patients forcibly removed from a treatment that they were not abusing, not misusing and showed no signs of addiction. We join with other groups in asking that the CDC Opiate Guidelines For Chronic Pain be re-written to provide better care of patients who use opiate medication responsibly and effectively.

Ways That You Can BE INVOLVED NOW!

  1. Share YOUR IC story
  2. Nominate your favorite doctor & physical therapists for our annual award!
  3. Share Our Daily IC Facts
  4. Add IC Awareness Month To Your Facebook, Twitter, Pinterest, Instagram, etc.
  5. Help Put Our IC Awareness Posters in Thousands of Doctor Offices
  6. Share Our IC Fact Sheets
  7. Send Our Press Release To Your Local Paper 
  8. Participate in Our Poster Contest - Winner Receives A Kindle or Apple iPad.
  9. Participate in our Meme Contest - Winner Receives A Kindle or Apple iPad.
  10. Participate in Our Twitter Contest - #myicpain - Winner Receives A Kindle or Apple iPad.
  11. Donate an IC Book To Your Local Library
  12. Start A Support Group
  13. Wear Your Pride with IC Awareness Bracelets & Car Magnets

Thank You For Your Very Kind Cards

My Uterine Cancer Scare - Hormone Replacement Therapy Carries Risks

I'm back! Whew! It's been quite a journey through surgery and recovery. Thank you so very much for your very kind words of support and encouragement. You have no idea just how much you helped me get through what was an incredibly scary and difficult journey. I'm now ten weeks post surgery and the recovery has been daunting at times but it's definitely getting better and I'm back to work helping IC patients.

It's taken me a month to write about it and just process the experience but I think it's very important to share what happened (and the mistakes that I made) so that other patients might not have to go through what I had to go through. If you or a family member are considering hormone replacement therapy, I hope that you'll read "My Uterine Cancer Scare - Hormone Replacement Therapy Carries Risks" and have a very clear discussion with your doctor about its risks vs. benefits.


IC Videos

BPS/IC 2017 - The Emperor Has No Clothes by Dr. Christopher Payne

Dr. Christopher Payne (Vista Urology, San Jose CA) offers his course on IC/BPS from the 2017 American Urological Association. This fabulous lecture was used to educate hundreds of urologists interested in IC/BPS. Dr. Payne covers the history of IC and explains why current diagnostic and treatment strategies may be incorrect and out of touch. He talks about a new future for IC using phenotyping that improves patient treatment and care. Every urologist, nurse and medical school student should watch this video!

Watch The Video Here!


IC & Pelvic Pain News


Patients Report Opiate Pain Medication Their Most Effective Treatment of IC/BPS

When the American Urological Association created their Guidelines for the Diagnosis and Treatment for IC/BPS in 2011 they ranked their treatment options based primarily on clinical trial results. Researchers in Canada and the USA sought to determine if these treatment guidelines meaningfully reflected patient experiences by surveying 1628 females with IC. They found a tremendous disconnect.

Patients reported that the most effective treatment was opioid medications with 405/621 patients (65.6%) reporting improvement. Only 2.4% reported that it made them worse. The use of phenazopyridine (Azo Urinary Pain Relief Tablets, Pyridium) helped 390/638 patients (61.1%). Alkalizing agents (i.e. Prelief) also showed great improvement with 365/660 (55.3%) of patients reporting improvement. Amitryptiline and antihistamines were rated moderately effective. Read More


MAPP Study Finds That Fungus In Urine Might Be Linked To Urgency and Pain

One of the most promising lines of research in urology today is the study of the biome, the diverse population of bacteria and fungi that live harmoniously in the human body. In previous MAPP Research Network studies, IC patients were found to have high levels of Candida/fungi in their urine during flares.(1) Another found that IC patients are deficient in some important bacteria in our bowel while having higher levels of other harmful bacteria.(2) This latest MAPP Research Network study now links changes in fungal communities with the symptoms of urinary urgency and pain.(3) Read more!

New IC/BPS Phenotyping System Proposed – From UPOINT to INPUT

Dan Shoskes and colleagues have adapted the UPOINT guidelines to create a new subtyping system for use specifically with IC, called INPUT. This asks physicians to assess five distinct areas:

I – Is any infection present?

N – Does the patient also have any other neurological or systemic conditions

P – Does the patient have any anxiety / depression or other psychosocial issues?

U – Does the patient have Hunner’s ulcers (now known as lesions)

T – Does the patient have tight or dysfunctional pelvic floor muscles.

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!


Upcoming Events

ESSIC 2017 – (September 21-23) – Budapest Hungary

Both patients and clinicians are welcome to attend the International Society for the Study of Bladder Pain Syndrome Annual Meeting in Budapest. This event will feature many of the leading IC researchers and clinicians in the world today. Learn more here!

Bridge For Pelvic Pain (September 30, 2017) – Colorado Springs, CO

The Bridge For Pelvic Pain is welcoming chronic pelvic pain patients and providers to their annual conference. Learn about chronic pelvic, sexual and genital pain, and integrative treatments from presentations by doctors, physical therapists, counselors, wellness experts and patient advocates. New this year: Afternoon break-out sessions for patients and caregivers. Space is limited. Register Early! Learn more here!


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

IC Diet Project - Fresh Blueberries Are In Season! Our Favorite Blueberry Recipes!

One of the best parts of summer are the fresh blueberries available. When it comes to low acid and bladder friendly foods, you can’t go wrong with recipes that are focused on this luscious yet light and flavorful fruit! Here are some of our favorite blueberry recipes!

Read more!



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Self-Help Tip

Compounding Pharmacies Offer Cheaper Medications

In the past month we've had several phone calls from women who were struggling to afford the estrogen creams that they are using to support their skin health "down under." Apparently, the cost of Premarin has risen dramatically and/or not been covered by some insurance companies. One woman was told she would have to pay over $500 for a three month prescription.

Premarin has not been a popular product in the IC community for two key reasons. It contains a number of preservatives and fillers which seem to cause more burning of the skin and it supports a remarkably cruel horse industry. Thankfully, many compounding pharmacies can provide far more affordable and high quality estrogen products. I get my cream from the Women's International Pharmacy and it costs about $30 for a three month supply.

So, if the cost of your medication is too high, contact a compounding pharmacy in your community to see if they make a version of that product. Compare prices among pharmacies.

Did you know that pentosan polysulfate (aka Elmiron) is available in a compounded time release formula. It's available at several compounding pharmacies including Imprimis Pharma.


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: 80,819 - Posts: 638,813 - Active Members: 45,600


Introducing a New Low Acid Coffee - Bella Rosa

If you miss your coffee and are frustrated with its ability to irritate your bladder or gut, we have three new, exciting ones for you to try from The Bella Rosa Coffee Company. For many years, we all assumed that it was the overall pH or acid level of coffee that was the trigger for our symptoms. However, research by Dr. Takayuki Shibamoto, Distinguished Professor at the UC Davis Department of Environmental Toxicology, has found that one specific acid, chlorogenic acid, causes the majority of acid irritation and bitterness seen in most conventional coffees. The secret to calming acid sensitivity is to look for a coffee that is low in chlorogenic acids.

The Bella Rosa Coffee Company produces the lowest levels of chlorogenic acid in the industry because they developed a patented roasting method that relies on hot air rather than hot steel. Their organic coffees contain several hundred times less CA than industry standard (.00171 ml of CA vs. 6mg per ml) which have made them far more appealing to those who struggle with acid sensitivity. Ironically, that wasn’t their original intention. After starting their company, many customers called them back to say that their coffee didn’t cause stomach upset. Curious, they dove into the research, found Dr. Shibamoto’s work and had their coffee tested. Their roaster is a marvel at reducing the most irritating acid in coffee.

We’re incredibly excited to introduce this for those who would like to try coffee again. Of course, if you’re in a flare, we think you should avoid all coffees until your bladder has calmed down. But, if you’re able to enjoy a cup or two, you might find this coffee the most bladder friendly on the market today. And, the company has provided some RARE samples for our members to try too! Just $2.99 for you try to a pot and see if it agrees with you!

Read more!


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

1. Shop Software & Membership Update

This week, we'll be updating the ICN Shop to new software with a new membership portal. We'll have three memberships each with their own membership area where you will be able to download a variety of IC magazines, fact sheets, books and much more! When you renew your subscription, you'll get access to the new areas. It's been months of planning and building. The ICN Shop will be down for a few hours this week. We appreciate your patience.

2. MultiRight Low Acid MultiVitamin

MultiRight Low Acid MultiVitaminMultiRight, the only low acid multivitamin on the market, continues to be quite populars. In late 2012, we brought the idea of developing a low acid vitamin to the marvelous team at Farr Labs, Inc., makers of the well known CystaMD, CystaQ and ProstaQ line of products. They were intrigued by the idea so much so that they researched the concept and began developing this new multivitamin, known as MultiRight.

What sets this supplement apart are the ingredients. The most acidic and problematic ingredient for IC'ers, vitamin C, is sourced from calcium ascorbate rather than the more acidic, citrus derived ascorbic acid. The calcium and phosphorus is partially sourced from calcium glycerophosphate, a product also well known to reduce acid levels in food. The end result is a vitamin that will be more tolerable for patients who struggle with acid sensitivity! MultiRight Low Acid MultiVitamin

3. Pumpkin Season Returns with Pumpkin Spice Tea

Yes, it's that time of year again. Trees are turning bright red here in California and fall 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!

4. OTC Neutraceuticals (Step One Interventions)



Cysto Renew


Desert Harvest Aloe

5. OTC Flare Relief Products


AZO Urinary Pain Relief Tablets

GingerBee Heating Pad

MultiRight Low Acid MultiVitamin