IC Awareness Month - What should we do? Join our national committee!
This week is National Women's Awareness Week, one of the best PR campaigns for women's health in the world. Haven't you wondered why IC or pelvic pain aren't getting the same attention?? Honestly, when you see a pink ad for the Susan G Komen foundation, don't you envy their awareness efforts? We do! The funding that it brings in for research is staggering.
We think that the IC movement deserves a similar effort, one where patients in every state have the chance to get involved. From "meet ups" where you can meet other patients to getting city and state proclamations to honor the men and women struggling with IC (and the doctors who treat them), we can and should have a robust IC awareness movement. The challenge, though, is coming up with new ideas, coordination and, of course, hands to do the jobs.
We're looking for a team of patients, men and women, who can help us create an amazing IC Awareness Month next October. We need:
- Writers to help write feature articles, press releases & sample proclamations
- Artists to create a logo and more!
- Team leaders in every country, state or province to help organize atleast one regional activity
- Social networking experts to create an online campaign
- Home videos about how IC has changed your life
- Ideas - What does your state need?? More support?? Doctor education?? Activities for children, teens, adults or seniors??
This could be historic for the IC movement and, more importantly, a great chance to work with and meet like minded patients who dare to dream, think big, and make new friends. All countries and states welcome!
You can also send me an email! at firstname.lastname@example.org
Feature Story - Understanding Chronic Pelvic Pain
(By Susan Bilheimer, Author of Sexual Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships)
When I was first told I had chronic pelvic pain (CPP), I was annoyed. It had taken me the better part of a decade to finally receive a diagnosis of interstitial cystitis (IC), vulvodynia, irritable bowel (IBS), and fibromyalgia. I didn’t need another “label.” Plus, I thought pelvic pain had to do with the bones that make up the cradle in which the organs sit “down there” and nothing to do with my constant urge to urinate, vaginal burning, stomach bloating, etc.
I was dead wrong. Chronic pelvic pain is the phrase used by the medical community to describe ongoing or intermittent non-cyclic pain of any or all the organs and systems between the belly button and thighs. It is essentially the umbrella under which a myriad of conditions and symptoms intersect, including irritable bowel, lower back spasm, and, yes, IC.
Dr. Bruce Kahn, a gynecologist at Scripps Clinic in San Diego, California, explained the difference between acute and chronic pelvic pain. “Women with acute pain come in with, for instance, an ovarian cyst, a bladder infection, appendicitis, and so on. They get treated for the condition and go on with their lives. Chronic pain is very different. It can affect whether and how you can work, and how you function with family and friends.”
According to the International Pelvic Pain Society (IPPS), CPP is one of the most common medical problems affecting women today, estimated to affect one-fifth to one-seventh of American women aged 18 to 50. Shockingly, another statistic from the IPPS is that of these millions of sufferers, over half have still not been properly diagnosed, almost 90% suffer with sexual pain, and many continue spiraling downward into the abyss of despair and pain.
Consumer Alert - Improperly Prepared DMSO Leads To A Case of Bladder Destruction
(By Jill Osborne MA)
Can you imagine having what is normally considered a safe treatment only to experience severe, irreparable damage? A young IC patient in Tennessee went to her urologist for an instillation of DMSO and suffered bladder destruction so severe that she required immediate bladder removal surgery. It was later discovered that the DMSO she was given was not from the pharmaceutical company nor was it made in a US Food and Drug Administration (FDA) approved facility.
How could this have happened? To save money, the urology clinic office manager purchased cheap DMSO from a compounding pharmacy rather than the FDA approved RIMSO-50 from the pharmaceutical company. Tragically, the pharmacy in question made a devastating mistake with the dilutions and sent the doctors office improperly prepared medication that was far too strong. It was apparently solvent strength.
Webinar on Overlapping Conditions A Success
Last Wednesday, the Overlapping Conditions Coalition offered a wonderful online webinar for patients struggling with IC, CFIDS, Endometriosis, TMJ, Vulvodnia and more. The course was so good that we strongly suggest that you listen to it if you suffer from any of the related conditions. The 30 minute lectures were superb, offering the latest up to date information on treatments and research. The recording is now available at: http://www.cfids.org/webinar/series2010-past.asp
May 2010 Bladder Academy Classes
The Bladder Academy offers monthly VIDEO & PHONE IN courses for patients who are trying to gather information on IC. You can participate by phone or via computer (gotomeeting.com), where you'll have the chance to watch a powerport presentation, hear an audio lecture and ask questions! We'll send you a link to the classroom shortly before the class to enter the room. Come join us and learn the latest about IC!
Newly Diagnosed Orientation - Wednesday, May 12, 2010 - 6PM PST 9PM EST
An In-Depth Review of IC Treatments - Monday, May 17, 2010 - 6PM PST 9PM EST
Introduction to the IC Diet - Tuesday, May 18, 2010 - 4PM PST, 7PM EST
Personal Coaching Now Available
The ICN offers private classes or personal coaching for patients who cannot attend regular classes or who would like to discuss their issues and/or ask questions in depth. There are three instructors currently on the faculty, including: Jill Osborne MA (diagnosis, treatments, self help, flare management), Julie Beyer RD (the IC diet, menu planning, elimination diet strategies) or Diana Brady MA CNC (alternative and naturopathic strategies).
Coaching sessions are for informational purposes only. They do NOT provide personal medical advice, nor are they intended to be a substitute for professional medical advice, care or counseling services. As educators, their goal is to help you become an advocate for your medical care.
Upcoming Patient Events
June 5, 2010 - Finding Better Relief: Working with an IC Healthcare Team
This is an opportunity for patients, caregivers, and healthcare providers to meet face-to-face with leaders in the field to hear respected physicians discuss their IC treatment philosophies. If you are unable to attend the event in person but would like to tune in and participate, the ICA will be airing a live FEE BASED webcast of the in-person event.
FEATURED SPEAKERS: Barry Jarnigan, MD & Ragi Doggweiler, MD
Saturday, June 5, 2010,
9:30AM - 11:30AM
WHERE: Hutton Hotel, 1808 West End Avenue, Nashville, TN 37203
ICA Member $15/ Non-member: $25**
Note: This fee applies to both the in-person event in Nashville and the webcast.
Find IC Patients in Your State or Province
When a patient finally finds another patient to talk with, that desperate isolation they often feel is broken. Meeting and talking with other IC patients reminds us that we're not alone and, thankfully, we can share strategies and ideas with each other. While we've helped thousands of patients connect, we realized we could do better!
We've just added brand new discussion forums for every state in the USA and every province in Canada so that you can post support group meetings, compare notes on clinics, doctors, post meetups and more! We've also transferred a few posts from the past few months but we need brand new listings and posts for every state. Now available for your use!
Looking For IC Friendly Recipes?
Did you know that the ICN was the first organization to bring IC diet information to the internet? In fact, we were the only ones to do so for several years. We continue to offer exhaustive diet information including our IC and Diet educational page, our on-line cookbook, the IC Chef Cookbook and more than 50 informational columns on the IC diet in our Fresh Tastes by Bev Feature column.
One of the more exciting areas though is our patient recipe exchange where you'll find hundreds of new recipes submitted by patients!! In fact, we've gotten so many in the past six months, we've broken them up into categories to make it easier for people to research them!
Please try some of the recipes and let us know what you think and, even more importantly, share some of your favorite IC friendly recipes with us!
Breakfast & Brunch - Sandwiches - Burgers & Pizza - Sauces, Marinades & Dressing - Main Dishes - Casseroles - Vegetables & Side Dishes - Appetizers & Snacks - Salads and Soups - Breads, Muffins and Scones - Desserts - Hot Drinks - Cold Drinks - Cookies & Candy - Cocktails
My Food Styles With Chef Daniel Norton - The Tomato
Editors Note: Chef Daniel Norton has taken a strong interest in helping IC patients enjoy flavorful and inspiring food despite our dietary limitations. His blog, MY FOOD STYLE, has quickly become a popular favorite in the IC community where you can read columns and submit questions to him. This month he takes on red sauce. - Jill O.
The Tomato & Solving the Mystery behind Red Sauce
I have always been infatuated with the size and wonder of planes, how massive steal transports lift as if weightless from the gravity dominated ground and float above the clouds, and what better place to indulge in such fascination then the Denver International Airport. You might be asking yourself, “what do airplanes have to do with tomatoes?“ Well on a beautiful Thursday morning in 2001, aboard flight 409, I was the main attraction in one of the greatest messes in United Airlines history.
The Latest IC Research
If you have any doubt about the future of the IC movement, look no further than at the new, dynamic research that is produced each month on new therapies, diagnostic methods and, of course, the potential causes of IC. We've chosen to highlight studies and papers that we think are particularly interesting.
Some Interesting Studies & Papers
IC/PBS Clinical Trials
Clinical trials represent an important part of the IC research process because they help to test various theories and the effectiveness of potential new therapies. You can learn more about trials, their pros and cons and how to participate in the ICN Clinical Trial Center and/or at clinicaltrials.gov.
Here are a few of the newer studies being conducted:
Patient to Patient: IC Success Stories
We love patient success stories! Here are some of the recent messages posted by IC patients in the ICN Support Forum.
- Just got back from vacation
- Learning to Self-Cath was Easy!
- Paradoxical Relaxation - Pelvic Floor Relaxation Success Story
- I'm pain free for a year now - Trigger point therapy worked
- Distilled water in my instillation
- For newly diagnosed and scared people
We're Looking For Medical Care Provider Recommendations
With the help of new ICN staffer Sharon, we've been updating our medical care provider listings. In addition to finding physicians who are interested in working with IC patients, you'll also find dietitians, pain specialists and psychotherapists who might be able to help you.
We're ready for more suggestions and recommendations. Who better to tell us what medical care providers are the best than you, the IC patient. 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.
New IC Support Groups & Support Opportunities
Can you imagine how great it would feel to walk into a room filled with others who understand exactly what you're going through?? Having IC is difficult at times and doing it alone is unnecessary. There are dozens of independent IC groups around the country who are waiting to help you! Don't suffer in silence at home, alone. If there is a group near you, call the group leader and introduce yourself! Click here to find a support group near you!
ICN Live Support Chat Schedule
ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders. Join us live from the comfort of your home. Please note! Chats are free for all. No log in name and password are required. Just type in a user name and go!
When: 1st & 3rd Monday of the Month, 5PM PST to 7PM PST
Where: ICN Chat Room
IC Resources From The ICN Mail Order Center
http://www.icnsales.com - (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!
Toning Up For The Summer
When IC patients flare, it can be quite overwhelming to walk, much less embark on a fitness program. Running and/or typical aerobics classes, for example, can exacerbate symptoms. However, walking that keeps the hits more level and swimming are potential alternatives. Given the predisposition that many patients have towards pelvic muscle tightness, exercises that strengthen the stomach can also be difficult.
Luckily, the exercise program New Dawn Pilates For People with Pelvic Pain has been created specifically for IC patients and and receives rave reviews. Created for patients struggling with pelvic pain disorders, this DVD is ideal for individuals who are seeking new, gentle exercises that will not flare their symptoms. Because many patients can't perform long, intense workouts, this DVD has shorter segments which allows patients to personalize their workout according to their capabilities. In addition to a 47 minute complete workout, it also offers targeted workouts for warming up, arms, abs & back and legs.
IC Friendly Energy Bars
A delightful mid-day snack of wholesome and simple fruit and energy bars. Gorge Delights pear-pear and pear-blueberry bars are a popular favorite for IC patients. If you've never tried a Larabar, you should! A raw food energy bar with no flavorings or preservatives, these are not only healthy but also a great energy pick me up in the afternoon!
Do you go Commando?
Originally created for women who would prefer not to wear underwear, COMMANDOS are soft cotton pads that are placed along crotch seams where they provide a soft and absorbant layer of 100% cotton or cotton fleece. It's a very clever design with a sticky back that makes it flexible, adaptable and able to fit a variety of clothing and body shapes.
Dr. Richard Senn, a urologist in Kokomo ID, said "I see female patients daily with recurrent UTI's, urethral and vulvar irritation. Women often exhibit irritations from the chemicals used in common laundry detergents, which can lead to urinary infections. Original COMMANDOS patches offer a healthy alternative to those affected by these irritations and recurrent infections. The use of COMMANDOS patches is far superior for women using no undergarments at all..."
Dr. Robert Echenberg, a specialist in pelvic pain, said "My office nurse and I have been offering your product, COMMANDOS, for a number of months, and have gotten nothing but appreciation and thanks from many of our younger patients... I really believe they are convenient and useful for all ages and should be recommended more widely."
Prevent Yeast Infections With Probiotics
The downside of antibiotic use is that it can cause a disruption of the normal bacterial flora in the gut. What does that mean? Painful yeast overgrowth. Using a probiotic not only makes sense, but it might prevent future yeast outbreaks. CULTURELLE® is an all-natural dietary supplement containing the probiotic, Lactobacillus rhamnosus GG (LGG®). Developed in 1985 and patented in the US in 1987 by Dr. Sherwood Gorbach and Dr. Barry Goldin, of Tufts University, LGG, the subject of 250 clinical reports and studies, is the most widely researched strain of probiotic in the world