Interstitial Cystitis Network Newsletter

Late January 2014

Sponsored by: Prelief - CystaQ - BladderQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - Squatty Potty - PainShieldMD

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Two Patient Conferences You Should Know About!

(1) Free Interstitial Cystitis Symposium - February 22, 2014

Pelvic pain specialist Dr. Robert Echenberg and IC researcher Sonia Planey PhD are two of the featured speakers at the FREE IC Symposium being held on February 22 at the Commonwealth Medical College in Scranton Pennsylvania. The event is for men and women with pelvic pain, their family members, friends, medical students and medical care providers. No advance registration is required! You can just show up and enjoy these fabulous speakers! Click here to learn more!

(2) Alliance For Pelvic Pain - March 8-9, 2014 - New York City

The Alliance for Pelvic Pain has put together a new weekend retreat for MEN & WOMEN struggling with chronic pelvic, sexual or genital pain, this time in New York City.

Join some of the top chronic pelvic pain specialists in the country for this special 2-day educational retreat in New York City. This retreat is created for patients coping with chronic pelvic, sexual and genital pain with complex symptoms involving one or more of the following: Interstitial Cystitis (IC), Vulvodynia, Vestibulitis, Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Non-bacterial Prostatitis, Pudendal Neuralgia, Lichen Sclerosis, Endometriosis, and other pelvic and genital pain disorders.

Dr. Robert Echenberg, Dr. Deborah Coady, pelvic floor physical therapist, Amy Stein, and counselors, Nancy Fish and Alexandra Milspaw will provide a solid foundation of knowledge, skills, and comprehensive treatment modalities that will help you get back on track towards managing and healing your chronic pelvic pain.

When: March 8-9, 2014

Where: KIMA Center for Physiotherapy & Wellness

Retreat Registration: http://www.allianceforpelvicpain.com/Retreat-Registration.html

Learn more at: http://www.allianceforpelvicpain.com

 

Clinical Trials You Can Participate In

Gralise Study Seeks Men and Women With Pelvic Pain! Yes MEN!!!! Yay!

The Rehabilitation Institute of Chicago is conducting a Phase 4 clinical trial studying the pain relieving effects of a study drug, Gralise, a novel, long acting gabapentinoid, for people who experience chronic pelvic pain. Subjects with Irritable Bowel Syndrome, Interstitial Cystitis, Ulcerative Colitis, and Prostatitis are being recruited.

Learn more!

USA Study Weeks Women With Bladder Pain

We are pleased to inform you that a research study is now enrolling women with interstitial cystitis/bladder pain syndrome (IC/BPS). The goal of this research study is to see how well an investigational study medicine works in women to reduce moderate to severe IC/BPS pain.

Click here to learn more!

 

The Latest Research (Information is Power!)

Recent Blogs, Videos & Articles on IC, Pelvic Pain & Topics of Interest

 

Self-Help Tips

Cold & Flu Strategies For Interstitial Cystitis, Prostatitis and Bladder Pain Patients

Cold and flu strategies for interstitial cystitisFlu season is in full force throughout Europe and North America leaving interstitial cystitis, bladder pain and prostatitis patients to wonder just what can they use to control and reduce their symptoms without aggravating their symptoms.

Remember that influenza is VIRAL, thus antibiotics will not help. If you read the Fall 2013 IC Optimist, you should remember that 50,000,000 million antibiotic prescriptions are written each year that have no effect at treating viral infections and, in fact, are contributing to a dramatic rise in dangerous, resistant infections. On the other hand, if your flu symptoms have become more severe, then we encourage you to talk with your doctor. If your throat is very sore and you can barely swallow, you may have developed a dangerous strep infection that should be treated immediately. Similarly, some patients may also develop painful sinus infections and/or bacterial pneumonia. When in doubt, talk with your physician!

Click here to read our article

Sam Berns Philosophy For Happiness - How A 17 Year Old Can Teach Us All How To Live Despite The Presence of Illness and Pain

Sam BernsIf you've never heard of Sam Berns, you've missed an amazing young man. Sam was one of the most inspirational role models for children and adults suffering with a challenging medical condition, in his case progeria. He was bright, vivacious, and keenly intuitive about finding happiness even while living with pain and under the specter of a terminal illness. Sam passed a few days ago at the age of 17 and his life and message deserves to be celebrated.

Click here to read our article

 

Consumer Awareness

Interstim FDA Report - Battery Acid Leakage May Have Contributed To Patient Death

In a recent review of the FDA's Maude Database, an online database of medical device adverse events, we found a very unusual report sharing the death of a patient that may have been related to battery acid leaking from their Interstim device. The report says:

"It was reported the patient died on (b)(6) 2013 due to ¿acid leakage and parkinson¿s. ¿ it was stated the patient had parkinson¿s stage three and they fell down the stairs while walking their dog and the patient went to a rehab facility after the fall. The patient did not do her leg exercises at the rehab facility, so her legs ¿atrophied¿ and she could not get out of bed. By lying in bed she became stiff from parkinson¿s and lost weight from not eating and having a poor appetite. It was stated the battery packs that were in her, ¿the acid started leaking and created holes in her kidneys."

What is particularly frustrating about the MAUDE database reporting process is that follow up information is rarely provided nor can we see if additional investigation has or is occurring. Could the battery have been damaged during a fall?? Could it have been a device failure? Did it really leak? We really don't know and may never know because the US FDA doesn't seem to be investigating fatality reports such as this or, if they are, the information is not released to the public.

Are you are frustrated as we are?? Please sign our new petition at whitehouse.gov demanding that fatality reports be fully investigated by the FDA!!! Click here to sign!

 

Find a Provider Database Update!

 

We've just finished a complete revision of the ICN "Find A Provider" database that has helped thousands of IC patients find urologists, urogynecologists, physical therapists and pain specialists in their local community. Now available in a google map format, you can search by zip code, specialty and so forth! We're excited! It's very new, different and should work well on mobile phones as well!

Our "Find A Provider" section is now accessible from every page of the ICN, in the top menu bar!

Click here to search our database

Medical Provider Recommendations Needed for USA, Canada, Australia, New Zealand and any other countries!!

Our database is very different from others. It's based almost entirely on patient recommendations! In other words, patients like you have shared the names of doctors that have you treated you kindly and professionally! If you've found a fabulous doctor, physical therapist, pain specialist, please share their name with us using the doctor recommendation form below!

We also welcome submissions directly from medical care providers who work directly with IC, pelvic pain, pelvic floor dysfunction, prostatitis and pudendal nerve entrapment.

Click here for our doctor recommendation form!

 

Support Group Listings Updated!

As we've been migrating our website over into a new, expanded Word Press format, we realized that having support groups mixed with provider listings was just inefficient. So, we've broken the listings out into their own pages! If you've never met another IC patient, this is your chance to meet some fabulous men and women who have a lot to share! You are not alone in your journey with IC. There are groups around the world just waiting to help! Please check the lists below to find a group near you!

If you have a support group that you would like listed please send your information to: supportgrouplistings@ic-network.com or call 707.538.9442!

Support Group Resource Center - How to start a new group

Some of you have cruised through the lists above only to see that there are no groups in your area. It happens. Group leaders burn out, move away or have other life issues happening. We encourage you to start a group in your community if there isn't one and we've built a new Support Group Resource Center chock full of ideas to help you get started! You can learn about:

Canadian Patients Needed To Start National Organization

The Canada IC support group system collapsed when the British Columbia IC Support Group & the Canada IC Society folded more than ten years ago. They were an excellent non-profit that provided support and encouragement for hundreds of patients under the leadership of Sandy McNicol. Surprisingly, the group did not fold because of the lack of money. It was due to the lack of volunteers who were willing to step in and help run the organization as Sandy finished out her career as a nurse. It was, honestly, heartbreaking to watch. We, at the ICN, helped by launching the Canada IC Information Center to assist in the transition and to give Canadian patients a home for support. That website was then folded back into the ICN website a few years ago!

We have been desperately looking for some Canadian IC patients who would be interested in starting a new national organization because, honestly, it takes a Canadian to understand the challenges that the Canadian Health Care system brings. If you're interested in getting involved at the national level and/or have a Canadian support group that you would like listed, please send your information to: supportgrouplistings@ic-network.com

Support Group Guest Speakers

Is your support group looking for guest speakers? ICN Founder Jill Osborne is booking appointments for the Spring for speaking at support groups using skype! She'll be speaking to groups in Arizona, Pennsylvania in March! All that is needed is a computer with video, audio and skype! It's very easy to do and fun! Oh, and it's free! As a support group leader for twenty years, she loves talking about IC and helping groups move forward!

She's happy to take questions from the group or, if you'd like, can cover recent developments in IC, treatment options, self-help, diet and much more! If you're interested, send her an e-mail at: jill@ic-network.com.


Stuck inside? Here are two new books worth checking out!

Ending Male Pelvic Pain: A Man's Guide

Ending Male Pelvic Pain Physical therapist Isa Herrera has released her SECOND ground breaking book, Ending Male Pelvic Pain: A Man's Guide, which shares her successful pelvic pain and pelvic floor dysfunction treatment approach. She says "I've had many successes in treating men with pelvic issues and I must say that the men who are the most successful either possess or develop a positive, fighting attitude and learn how to take control of their pain and pelvic floor issues on their own."

The book is exceptional and a must read for men struggling with IC, prostatitis or recovering from prostatectomy. In Part One, Isa provides one of the best discussions of pelvic floor anatomy that I've read. The pelvic floor is unusually complex with muscles in various locations and depths. She shows readers how to examine their muscles to determine which could be contributing to their pain.

Part Two offers an extensive set of exercises and stretches (with demonstrative pictures, including how to do kegels, using pilates balls, yoga, stretching in the workplace, using a foam roller and building a strong core.

Click here to learn more!

Healing Through Chronic Pain

Healing Through Chronic PainMary Ruth Velicki, a physical therapist and university instructor, endured intense, debilitating pelvic pain for years. Determined to get better, she set aside her initial skepticism and tried a plethora of treatments from the Western, Eastern, and alternative sides of medicine. To her surprise, she underwent incredible healing that extended beyond her physical body to her full person and experienced many direct connections between her body, mind, and spirit. In Healing Through Chronic Pain, Mary Ruth recounts her five-year journey of "healing through the layers" and personal transformation. Along the way, she shares the treatment strategies she used and the support she received from a team of professionals to move past the pain and to heal her whole being.

The reviews for the book are exceptional. Dr. Carolyn Sachs gave it a five star rating and wrote "Mary Ruth relates her honest and successful struggle with chronic pelvic pain in an easy to read and engrossing fashion. The key to her success is the fact that she took control of her condition and took the responsibility upon herself of getting well rather than expecting the traditional medical model to "cure her". Her methods to recover a normal pain free life will help readers more than any pharmaceutical or ED visit."

Click here to learn more!

 

IC Resources From The ICN Mail Order Center

www.icnsales.com - 800.928.7496 or 707.433.0413

Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive web site, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!

 

Valentines Ideas For Interstitial Cystitis and Pelvic Pain Patients

 

If there's one holiday designed to aggravate an IC patient, it's Valentine's Day. We've assembled a few items that we hope will help! In "Treats for My Sweet", you'll find some of our favorite IC friendly candy and cookies, perfect for an IC friendly treat. Oh and check out the healthy snacks too. The coconut chips are to die for! In "Romance and Sensuality," you'll find a selection of items that you might find both fun and pleasurable for men and women! We'll shortly be an affiliate for the leading men's sex toy, the TENGA which is a perfect alternative for those moments when intercourse isn't possible! If you're struggling with sex, we also have some books that are very helpful!

As I wrote in the blog mentioned above, the true gift of Valentine's Day is that we get to tell those people that we love just how much they mean to us. Don't let expectations get in the way. We've all had both good and bad days! This year, use it to tell the people you love just how much you care about them! - Cheers to you! - Jill Osborne, ICN Founder

Introducing Highland Organics Blueberry Tea & Barque

An IC patient found this small, organic farm in the northeast last year and suggested that we try their blueberry tea and barque. Wow! It's really REALLY good. The Highland Organic Blueberry Tea is made from fruit and organic blueberry leaves in late Fall! It steeps to create a beautiful, purple tea that is light, refreshing and surprisingly good! The Highland Organic Blueberry Barque is crispy, light and bladder friendly! Definitely worth a try!

Blueberry Tea Blueberry Barque

KIND Nut Bars

Kind Nut BarsIt is so hard to find healthy, IC friendly snacks! After all, pears and blueberries get a little boring after a while, right?? Well, if you haven't heard about KIND nut bars, you're in for a treat. KIND bars are made from all-natural whole nuts, fruits and whole grains. No secret ingredients and absolutely nothing artificial here. Just a delicious way of getting your body essential nutrients like fiber, protein and antioxidants (to name a few).

We've fallen in love with these very healthy bars and we hope you will too!!!! There are 20 varieties but we're starting with just two flavors that should be IC friendly because, well, we're eating them every day and not flaring - (1) ALMOND & COCONUT and (2) ALMOND & APRICOT, covered in yogurt!

 

Introducing FibroProtek

FibroProtek is designed to fight fatigue and help the body deal with muscle pain. It is the latest supplement developed by Dr. Theoharis Theoharides as part of the Algonot line of supplements. Dr. Theoharides suggests that it be used in conjunction with CystoProtek to increase energy and reduce muscle pain. It contains:

Coenzyme Q10 - 85 mg - helps convert food to energy and may be important to cognitive and nervous system health. CoQ10 is an antioxidant, a compound that blocks the actions of free radicals, activated oxygen molecules that can damage cells. Scientists also believe that CoQ10 may have beneficial effect on the immune system.*

Carnitine - 170 mg - In studies, it's been shown to ease discomfort, lessen fatigue and improve mental health.*

Luteolin (Pureolin) - 255 mg - is a member of a class of naturally occurring molecules, known as flavonoids. A number of recent published papers show that in experimental settings, luteolin, an antioxidant reduces free radicals, mast cell and microglial activation.*

Quercetin - 170 mg - is a natural flavonoid and closely related to Luteolin. Algonot decisively chose not to use the more common and less expensive source of fava beans or peanut shells, in order to avoid possible unwanted reactions.

White Willow Extract - 85 mg - may be important to nervous system health.* In studies, it's been shown to ease discomfort, lessen fatigue and improve mental health.*

Learn more!