Late January 2014
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.
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.
The Latest Research (Information is Power!)
- Intravesical Heparin For Interstitial Cystitis - This free article from Hospital Pharmacy summarizes how heparin instillations are used and shares the latest research and clinical studies. EXCELLENT RESOURCE worth printing and sharing with your medical care provider!
- Sjögren's syndrome accompanied with interstitial cystitis: a case report and review of the literature. - This case study of an IC patient found that she also had symptoms of sjogren's syndrome, particularly long term dry mouth. Therapy with corticosteroids relieved her symptoms significantly! If you struggle with dry mouth, sjogren's and IC, this is worth sharing with your doctor!
- Role of Urinary Cations in the Etiology of Bladder Symptoms and Interstitial Cystitis. - Dr. Lowell Parsons produces research which suggests that IC could be caused by cytotoxic cationic metabolites in the urine.
- Urgency and pain in patients with overactive bladder and bladder pain syndrome. What are the differences? - These researchers compare and contrast overactive bladder with interstitial cystitis, coming to the conclusion that if a patient has pain as the bladder fills, they should be referred to a specialist. However, if they just have mild symptoms of frequency and urgency, their regular doctor should be able to manage it!
- Decreased expression of zonula occludens-1 and occludin in the bladder urothelium of patients with interstitial cystitis/painful bladder syndrome. - This research study finds that IC patients have reduced levels of "tight junction proteins" which help make the bladder impermeable. They suggest that therapies which help restore the bladder wall be utilized.
- Evaluation of the extent of ketamine-induced uropathy: the role of CT urography. - This study finds that patients who abuse ketamine suffer not only severe bladder damage but also damage to the upper urinary tract, including the kidneys and ureters.
- Increased Severity of Inflammation Correlates with Elevated Expression of TRPV1 Nerve Fibers and Nerve Growth Factor on Interstitial Cystitis/Bladder Pain Syndrome. - This study finds that nerve growth factors correlate with the degree of inflammation in the bladder wall.
Recent Blogs, Videos & Articles on IC, Pelvic Pain & Topics of Interest
- Are you becoming nutrient deficient on the IC Diet - IC Diet Confident Choices - Julie Beyer RD
- The IC Diet: Getting to your baseline - IC Diet Confident Choices - Julie Beyer RD
- No friends are better than fake friends - Ramblings of an IC Patient - Tali Keteri - Do you miss the friends that you lost during your journey with IC? Tali Keteri writes yet another exception and "in your face" blog about life with IC.
- Caffeine use disorder: A widespread health problem that needs more attention - Thanks Julie B for sending this our way!
- Why do doctors hesitate to recommend marijuana? - This video explains that MMJ is considered quite safe but that finding the correct dosage is very challenging.
Cold & Flu Strategies For Interstitial Cystitis, Prostatitis and Bladder Pain Patients
Flu 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!
Sam Berns Philosophy For Happiness - How A 17 Year Old Can Teach Us All How To Live Despite The Presence of Illness and Pain
If 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.
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!
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.
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: firstname.lastname@example.org 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:
- Types of Support Groups
- Support Group Leaders - Do you have what it takes?
- Choosing an affiliation
- Getting Started
- Group Meeting Schedules
- Format, Agenda & Structure
- Topics& Guest Speakers
- Support Group Leader Survival Tips!
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: email@example.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: firstname.lastname@example.org.
Stuck inside? Here are two new books worth checking out!
Ending Male Pelvic Pain: A Man's Guide
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.
Healing Through Chronic Pain
Mary 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."
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!
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
- Treats for my Sweet! - IC Friendly Candy!
- Romance & Sensuality - Nurturing intimacy - Books, DVD's, Lubricants, Toys & More
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!
KIND Nut Bars
It 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!
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.*