You Are Cordially Invited To The Houston Pelvic Health Conference!
Get empowered and come learn how you can influence your treatment in a powerful way! The biggest challenge for people with chronic pelvic pain is becoming an effective advocate. This conference will help, offering you valuable information about your health conditions and insight into getting better care and treatment. Perhaps the best speakers panel for a patient conference this year, we think this conference is worth travelling to to attend. This is also a great chance to meet others living with the same conditions as you!!!
5th Annual Pelvic Health Conference - Saturday Feb. 20, 2010 (8:30 to 4:30pm)
Meet the Speakers Reception - Friday, Feb. 19, 2010 (4:30 to 6:30pm)
Crowne Plaza Greenspoint, 425 N. Sam Houston Pkwy E, Houston TX 77060
Who Should Attend:
Patients, family members and/or friends of those struggling with interstitial cystitis, vulvodynia, endometriosis, pelvic floor dysfunction, overactive bladder and other related conditions.
Low $40.00 registration fee covers admission to “Meet the Speakers Reception” on Friday,“Patient Conference” on Saturday, information packets, breakfast, extra special lunch round table discussions & drinks. Seating is limited! The first 150 people to register are guaranteed a seat. Reserve your space today!
Edward Stanford MD MS - Keynote Speaker Topic: "Prevalence of Interstitial Cystitis, Endometriosis, Adhesions, and Vulvar-Pain in women with Chronic Pelvic-Pain" and "Treatment Modalities, Health Care Resources, Utilization, & Costs in Patients Diagnosed with Chronic Pelvic Pain"
Daniel Brookoff MD PhD - Topic: "Managing Chronic Pelvic Pain and Urological Symptoms with External Stimulation"
Christopher P. Smith MD - Topic: "Oral Medications for the Treatment Algorithm of Patients with Overactive Bladder or Pelvic Floor Dysfunction "
Peter Lotze MD - Topic: "A Basic Guide to Pelvic Health"
Fred S. Emmite RPh CDM - Topic: "Diet and Nutrition: What you Eat can Affect your Bladder"
Esperanza McKay BC - Topic: "Pelvic Floor Muscle Rehabilitation"
Ronald Henry MD - Topic: "Treatment Algorithms of Patients with Overactive Bladder and Pelvic Floor Dysfunction"
George T. Somogyi MD PhD - Topic: “Current Research for Neurourology”
Elmiron Patent Expires This Month
As we first shared last February, the patent for Elmiron® (pentosan polysulfate sodium) does indeed expire January 19, 2010 raising a variety of concerns. Having a patent expire means that the drug is now available for manufacturing as a generic medication. For patients, this can be a very good thing because generics are usually much less inexpensive than the brand name medication. As one patient reported this week on our website, Elmiron® can cost over $700 per month if you lack drug prescription coverage. To have that monthly fee reduced to, say $25 per month, would be outstanding.
Of course, the challenge is profitability. Elmiron® is only FDA approved oral drug for the treatment of interstitial cystitis thus it doesn't have as large a market share as other popular generics. Will another pharmaceutical company step in and try to capture the market? At this point, we're not aware of any companies who are considering making pentosan polysulfate in a generic form. But, we hope so.
We are certainly grateful to Ortho McNeil and its predecessors ALZA and IVAX, who have played a critical role in the education of physicians about interstitial cystitis diagnosis and treatments. We would not be where we are today in terms of public awareness without their tireless PR efforts and sponsorship of various IC events. That said, having the medication be more affordable means that more patients may be able to try it.
Earlier this Fall, the ICN wrote about a dozen letters to various Senators and Representatives urging that the patent for Elmiron® be extended. We were torn. We like the idea of a cheaper, more affordable version. In the long run, patients will benefit from a generic version But, we chose to support a patent extension simply because we were fearful that no other pharmaceutical companies would step forward. We were thrilled to see last weeks ICA announcement that Ortho McNeil will continue to manufacture Elmiron® after the patent expires. This is great news!
So, whether you are for or against brand names vs. generics, time marches on and a New Year brings new developments and opportunities. Share your thoughts about this here!
Canadian IC Study Seeks Participants For Interviews
Oxford Outcomes are presently recruiting participants for a study related to Interstitial Cystitis (IC). The study will include one interview, about 1 hour in length, where you will be asked to complete two IC questionnaires and you will be asked for feedback. The interviews will take place in our Toronto office.
You will be reimbursed for your time.
You are eligible if you:
* Have been diagnosed with IC
* Are at least 18 years of age
* Are a resident of Canada
* Speak English as a first language
If interested, and would like more information, please contact Brianne at 647-260-0306 x 222 or by email at firstname.lastname@example.org
ICN Survey Center - Who Do You Rely On For Your IC Treatments
- Who first suggested that you might have IC?
- Who made your diagnosis of IC official?
- How many medical professionals did you see before you were diagnosed with IC?
- Who provides most of your IC treatments today?
- Who else provides IC treatments for you?
- Who do you rely on for pain care and treatment?
Please help us gather this information by participating in this very brief survey!
New Resource For Men With IC
The ICN is pleased to announce a new support resource for men with IC/PBS on Facebook. Why?? It's crystal clear that men need their own space and a place where they can ask their IC questions and offer support. It's brand new and we hope you'll help us build this over time. Guys, you're naturally quiet about your symptoms and struggles.. but this is a place where you can hang out and just be! Welcome!
Self-Help Tip Of The Month
(By ICN President Jill Osborne) When I start a New Year, I like to get organized. It’s out with the old and in with the new and that includes my bathroom where, like most IC patients, I spend a considerable amount of time. Having IC is challenging and I want to make sure that I have some small pleasures that will make those restroom moments more bearable. To avoid unnecessary bladder infections, I also need to make sure that my bathroom stays clean. Here are some ideas!
#1 – Towels That Comfort You! We all have bath towels that have seen better days. Once a year, we suggest that you donate your old, ratty towels to your local animal shelter and buy yourself some soft, warm and cozy towels. Cotton towels are ideal. Towels, though, can be a unexpected source of bacteria particularly if allowed to be damp for long periods of time. We suggest washing your towels atleast twice a week. Reduce skin irritation by using Ivory Snow or Dreft as laundry detergents.
#2 – Scents That Please You! If you’re like most IC patients, you probably have a very sensitive sense of small and the smells that bother us the most usually originate from the bathroom. Yet most bathroom sprays are just too strong. Look for a gently scented citrus scented candle like orange or grapefruit for a clean fresh aroma. If you need a spray, try Ozium brand sprays which reduce smells immediately yet don’t linger in the air. Avoid strong scent products, like Glade or Fabreze. These are often too irritating to our sensitive noses.
#3 – Soaps That Don’t Irritate You! With our uber sensitive skin, most mass market soaps are too harsh for our skin. The IC friendliest soaps to use in the shower or bath are Basis for Sensitive Skin or a plain Dove Bar. At your sink, you might find bar soaps too messy. We like to use liquid soaps for our hands, preferably those for sensitive skin. The Rainbow brand is perfect if you can find it.
#4 – Tissues That Please You! There’s nothing worse than needing to use the restroom only to discover no toilet tissue. Yikes!! Buy tissue in bulk and always keep atleast two new rolls in your bathroom. You might consider trying unscented, flushable moist wipes from Natracare or Seventh Generation for an extra soothing experience.
#5 – Water To Soothe You! If you struggle with “urine burn,” vulvodynia or rectal discomfort, a periwash bottle is a must addition to your toilet routine. Simply fill with water and rinse off your sensitive areas each time you use the facilities. Not only will this calm and soothe your vulva and perineum, it also helps keep bacteria at bay.
ICN Hot Drink Contest - The Winners!
We had many lovely new hot drink recipes submitted over the holidays for our Hot Drink Contest. The key, here, was an original recipe, a great flavor profile and, of course, IC friendliness. Remember, we all have individual tolerances to various foods! The Winners Are!
First Place: White Chocolate Vanilla Bean Cocoa with Cinnamon Whip Cream - n2indigoky
Second Place: Pumpkin Pie Latte - Daisy
Third Place: Hot & Spicy Pear Cider - OllieR
Carob Challenge: Mexican Hot Carob Cocoa - loveslife
Thanks to everyone for submitting recipes. This was an awesome collection of new recipes that you'll find printed in our next IC Optimist and, of course, directly on our website.
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 Bladder Friendly Recipes
We love patient recipes. Who better to share what works for them then patients just like you. Here are two more recipes submitted in the past month! Please help us build our list by sharing your favorite IC friendly recipes in our IC Diet: Recipes and Menu Ideas Forum.
Gypsy Soup (makes four large bowls)- ICN Member Briza
1 sweet potato cut in 1 in chunks**
1/2 onion or 4 green onions cut in 1 in chunks*
1 clove garlic sliced *
2 stalks celery cut in 1 in chunks
4 cups chick or veg broth or water
1/2 can garbanzo beans (drained and rinsed)
1 zucchini sliced lengthwise and then cut in 1 in chunks**
1/2 tsp turmeric***
1 /2 tsp dried basil
1 bay leaf
1/2 tsp cinnamon or pumpkin pie spice
*leave out onion/garlic if you aren't sure about those.
**any green and orange veggies will do (carrots & snow peas or butternut squash & fresh green beans)
***if you don't have turmeric in your pantry no big deal to leave it out...it adds color but not too much flavor
Sautee veggies in olive oil for 5 mins. Add broth/water, garbanzo beans, zucchini, and spices. Cover and simmer for 10-15 mins til veggies are done.
Whole wheat molasses bread (makes one bread pan or six Texas sized muffins)
1 3/4 cups whole wheat flour
1/2 cup all purpose flour
1 tsp salt
1 1/2 tsps baking soda
1 large egg
1/4 cup sugar
2/3 cup molasses
1 1/2 cups buttermilk or milk
Preheat oven 375
Mix the flours, salt, and baking soda in a large bowl. In another bowl whisk egg, sugar, molasses, and milk until well combined. Add egg mixture to flour mixture and combine until everything is well blended. Pour mixture into greased pan and bake 40-45 mins for a loaf and 25-30 mins for large muffins.
WANTED! Valentines Day "Sweets For My Sweetie" Suggestions
We're looking for your favorite "Sweets For My Sweetie" recipes for Valentines. What's your favorite IC friendly Valentines Day treat?? Pound cake?? Angel Cake?? Petit Fours?? Pear Torte?? Please scour your favorite recipes and submit them to our IC Diet: Recipes and Menu Ideas Forum. You can also review other submissions there and in our online IC cookbook, the IC Chef!
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. Why recreate the wheel and try to figure this out on your own when there are dozens of independent IC groups around the country who are waiting to help you! IC Support Groups will help you learn more about IC, about resources in your area and, most of all, can help you make some great new friends! 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, Leslie Grinnell & Kathi Heintz. Join us for a typical support group meeting live from the comfort of your home. What could be easier?? 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!
Calling All Chocoholics!
Do you miss chocolate?? Desperate for something sweet after dinner?? We have the perfect, IC Friendly alternative - brand new carob candies from Dollie's, including almond bites, babettes (similar to a Baby Ruth), turtles, coconut almond bars and peppermint twists. They are MARVELOUS and IC & IBS friendly!!!!!! We inhaled the samples. What I liked about them was that they were very rich, creamy and flavorful. Perfect for an after dinner sweet with small but filling bite size pieces! The mints were to die for!!! I think you'll love them and VERY INEXPENSIVE!!!!
Find them now at: http://www.icnsales.com/candy/
Ending Female Pain by Isa Herrera
"Ending Female Pain - A Woman's Manual " by Isa Herrera, MSPT is a ground breaking book for women with pelvic and sexual pain, containing dozens of easy, helpful exercises and tips that offer hope for patients with pelvic floor problems, vulvodynia, IC, etc. etc. This book gives you vital, easy and effective stretches, exercises and tips to help you take control and manage your pelvic pain symptoms.
She teaches you how to find and locate trigger points in your pelvic floor and, better yet, teaches you how to reduce those painful muscle knots. She offers massage tips that are easy and very effective at reducing adhesions around c-section and other surgery scars, including episiotomies. Her discussion of the vulva and vulvar skin techniques is probably the best I've ever read.
Using both pictures and diagrams, she offers a series of exercises and stretches for the relief of pelvic pain, including reverse kegel exercises, a GREAT series of exercises using pilates ball, several yoga stretches that I'm sure you probably haven't seen before yet are perfect for stretching out the pelvis, upper legs and lower back and several foam rolling techniques.
What makes this book truly unique and, I think, a must read for anyone with IC and pelvic pain, is her practical discussion of sex and how to reduce discomfort. Her tips are superb.. from performing a reverse kegel exercise before intimacy to help reduce pelvic floor tension, to using vaginal dilators for patients with vaginismus to a very unusual and obviously effective "vaginal steam" that can help make intimacy more comfortable.