We are so grateful to the thousands of patients, researchers, clinicians and sponsors for being part of the IC Network family! We work hard, every day, to help patients in need! Your phone calls, notes and e-mails of gratitude and encouragement mean the world to us! May we be the first to wish you a joyful Thanksgiving and Holiday Season! – Jill Osborne & the ICN Family!
ICN Survey Center
Did Your IC Begin After A Traumatic Event?
Zoe can tell you exactly what triggered her IC, a devastating car accident. Given what we now know about the subtypes of IC, the role of a traumatic event in the onset of pelvic pain makes sense. Childbirth, pelvic surgery, bicycle (and motorcycle) riding can put pressure and/or injure the pelvic floor muscles. Chemotherapy, ketamine use and simple bladder infections provide direct insult to the bladder wall. Patients with functional somatic syndrome struggle a hypersensitive nervous system where even mild trauma can trigger severe discomfort.
Most IC patients have reported that short term, intense stress can trigger an IC and/or IBS flare. Long term stress can have far ranging consequences, including chronic pelvic floor muscle tension, the development of painful trigger points, high blood pressure, heart disease, diabetes, depression, anxiety and a compromised immune system.
We’ve just launched a new survey to ask our newest members about the role of trauma and the onset of their IC symptoms. We hope that you will share your experience. How did your IC begin? Can you trace it to any specific events? Take the survey now and share your story!
A. New DVD Series Released – Healing the Pain ‘Down There’
New in Fall 2015! We’re thrilled to announce a fabulous comprehensive new resource for women struggling with pelvic pain! This extensive DVD series was produced by a team of multi-disciplinary professionals (ob-gyn, pt, etc.) and an incredibly motivated patient who wanted to make a difference.
Their point is simple. When you have pain “down there”, it’s very difficult to determine where the pain is coming from. This guide will not only help patients learn this, but also offers clear insight and self-help strategies for pelvic pain and pelvic floor dysfunction.
Each kit also comes with a welcome guide that includes a vaginal health guide, vaginal canal map, tips for managing constipation and tips for approaching and maintaining sexual health.
Total run time: 284 Minutes
B. Dr. Robert Echenberg Expands Pelvic Pain Practice to New York City
Dr. Robert Echenberg, one of the top pelvic pain specialists in the world, has announced that he is expanding his practice to New York City effective December 1st, 2015. He will be seeing patients two days a week in NYC and one day a week in his clinic in Pennsylvania.
Known for both his patient compassion and diagnostic acumen, Dr. Echenberg has worked with about thousands of men and women struggling with complex pelvic pain, including bladder, muscular, genital and sexual pain. He is one of the few providers in the world who clearly understands the complexity interplay between the organs, muscles and nerves in the pelvis. His passion is the development of a customized and non-surgical therapeutic treatment protocol for patients who have often been ignored or told their is no hope by other providers.
If you are struggling to find care or simply not making progress with your current treatments, he would be well worth a consultation and/or second opinion! To learn more about him please visit his website www.TheEchenbergInstitute.com.
C. The Hidden Benefits of Aloe
With OTC nutraceuticals now suggested in Step One of the AUA IC Treatment Guidelines, more and more doctors are recommending them. Fox News in Tampa Florida shared the story of IC patient Doris Hunsucker who struggled with severe urethral pain that she described as a “hot poker in my urethra.” After seeing seven doctors who prescribed a variety of ineffective therapies, Dr. Raviendar Bukkapatnam (Chief of Urology at Tampa Genera Hospital) suggested that she try Desert Harvest Aloe. He said “For patients who we treat for bladder pain and bladder disorders, I’ll tell you it’s usually our first-line agent and its response rate is well over 60 to 70 percent.” After just two weeks of treatment, Doris experienced relief! Read the full story here!\
IC Diet Project – Four Thanksgiving and Holiday Recipes issued!
Made possible by the sponsorship of DSE Healthcare Solutions, Makers of Prelief!
Clinical Trials Seeking Participants
We have an abundance of clinical trials currently seeking participants. Patients participate for a variety of reasons. Some have exhausted their treatment options and are looking to try something new while others participate because they simply can’t afford other therapies, such as Elmiron. In most cases, the medications and medical care you receive in a clinical trial is offered at no cost. Participating in a clinical trial is also a selfless gift to the IC movement. IC patient Meredith Small shared her clinical trial experience in an article “My Body On The Line – Take Me, For Example” for the Washington Post that is worth a read if you are on the fence!
- Lipella Study Seeks Men & Women With IC/BPS
- New LiNKA Study Launched In North America Seeks Patients With Hunner’s Lesions
- New LiNKA Study Launched In North America Seeks Bladder Pain Patients
The Latest Research
- Botox Reduces Pain In Interstitial Cystitis
- A systematic review on the efficacy of intravesical therapy for BPS/IC
- Predictors of reoperation after sacral neuromodulation: A single institution evaluation of over 400 patients.
- Pain and urinary symptoms should not be combined into one score: Psychometric findings from the Multi-disciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network.
- Correlation Between BPS/IC and Pelvic Inflammatory Disease.
- Tanezumab Reduces Pain in Women with IC/BPS and Patients with Non-Urological Associated Somatic Syndromes.
- Current and emerging drugs for interstitial cystitis/bladder pain syndrome (IC/BPS).
Living With IC Video Series – Thanksgiving & Holiday Episodes
The Living With IC video series has had more than 300,000 views on YouTube. We hope that these two holiday episodes provide you with some new, fresh ideas on the coming season! You can find many more, including more tips on travelling, taking vacations and, of course, managing IC flares on our website! (https://www.ic-network.com/videos/)
Interesting Blogs, Articles & Videos
- Why stepping away from it all is sometimes the only way to heal from within – by the AMAZING Tali Keteri
- Ten Things People With IC Want You To Know by Deni – How IC It Blog
- Pudendal Neuralgia Series #1 – Interdisciplinary Conversations – Stephanie Prendergast – Pelvic Pain Rehab
- Yoga Poses For Pelvic Pain – Gabrielle Chavarin – Pelvic Pain Rehab
- When was the last time you felt exhilarated? by Alyssa Tait – Equilibria Physical Therapy
We’re Looking For MD & PT Recommendations in Canada & USA
If you have a medical care provider who has helped you, please share their names with us! Please visit our clinical database and see if your doctor is listed. If not, please use our recommendation form. We’ll contact each doctor (your name NOT included to protect your privacy), let them know that they’ve received a great review for their patient care, share new IC resources with them and ask if they would like to be listed on our site.
Please Think of the ICN This Holiday Season
Every patient organization is seeking donations and assistance this holiday season. Times are tough. Almost all of the pharmaceutical companies that supported IC outreach in the past decade no longer provide any financial support as they focus more on building profit for share holders. The costs of medications have increased forcing many patients to choose between medicine and food. Many simply can’t afford a membership! We certainly understand the financial struggles of life with IC because we’re IC patients too.
But, if do happen to have the ability to make an end of the year donation or gift, we hope that you’ll think of the ICN as a possible recipient.
Here are five reasons why we think we are deserving of your financial support.
- We are the only patient support group that has an educational phone line and answers patient calls every weekday, all at no charge to our members. 1-800-928-7496
- We operate IC Awareness Month at a loss every year because it’s so important to get the word out.
- We provide this free e-newsletter to more than 25,000 readers each month keeping patients informed of the latest news, research developments, clinical trials and self-help strategies.
- Despite very modest funding, we have been rated the TOP (most accurate, credible and reliable) patient website dedicated to IC in research studies done by Harvard Medical School (2011) and the University of London (2013).
- We employ IC and/or pelvic pain patients because we believe that patients do have the ability to work and contribute meaningfully to this cause.
What’s New In the ICN Shop! – www.icnsales.com – 800.928.7496
OUR THANK YOU SALE – 15% off for orders over $100
Please use Coupon Code – THANKYOU2015 (Good through Midnight – 11/31/15)
1. Pumpkin Spice Herbal Tea
I found this herbal tea in Nov. 2015 at Barne’s & Noble in a large holiday display. Intrigued, I brought it home and fell in love. I 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. But the other cool thing are the sachets they use. This doesn’t come in a typical tea bag, but a small fabric bag to which contains a yummy collection of loose herbs. Of all the caffeine free roobios herbal teas that I’ve tried, this is my new favorite and I’ve got a cup of it on my desk right now! It hasn’t flared my bladder yet and I’ve made some really strong cups! Try it, you might like it too! <— Jill Osborne, ICN Founder
INGREDIENTS: Rooibos, natural pumpkin flavor, cinnamon, cloves and nutmeg.
2. OTC Neutraceuticals (Step One Interventions)
3. All Candy’s Are Now Back In Stock
After a long hot summer/ fall and just in time for the holidays, we’ve finally been able to bring back back our carob and white hot chocolate candy back in stock. From the best English Toffee we’ve ever tried to Pecan Honeymoons, White Chocolate to Missy J’s Truffles, these make for a wonderful treat during the holiday season! Please note that the single serving English Toffee’s and Honeymoons are very large. Try cutting them in half to enjoy over two nights if you can control yourself!
4. Simpatico Arabica Dark Roast Low Acid Coffee (Decaf & Regular)
If you’ve missed coffee and your bladder symptoms are under control, it might be time to try a cup of coffee again provided, of course, that’s low acid. Simpatico Low Acid Coffees get the best reviews from IC patients for their flavor and bladder friendliness.
Made from only the finest ingredients, Stephen’s Gourmet White Hot Chocolates offer a warm, comforting cup of hot goodness without the irritation of traditional milk chocolate. If you’re craving hot chocolate, we suggest you try this one first!
Comes in two flavors:
6. Bladder & Prostate Friendly Chair Cushions Back In Stock
Another new shipment of our Bladder & Prostate Friendly Chair Cushions has arrived. These sell like hotcakes! 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!
Please note that in our latest shipment, the “soft” cushions aren’t quite as soft as normal. They are more “medium.”