ICN E-Newsletter - June 2016
Trouble reading this issue? Read it on the web here!
New "Living With IC" Video
Subtypes For IC Offer Hope and Clarity For Struggling Patients
Did you know that there is tremendous variation in the IC patient population? Some patients have profoundly damaged bladders while others have normal bladders yet both struggle with symptoms of frequency, urgency and pain. Up to this point, both would be diagnosed with IC in in the USA but clearly they are NOT the same condition. In this video, Jill Osborne explain the five subtypes of IC proposed by Dr. Christopher Payne and why she thinks they represent the future of IC diagnosis and care! After watching it, we hope you'll be able to figure out your subtype! What do you think? Did he nail it?? Let us know via @icnetwork @icnjill #icsubtypes
Interesting Blogs/Feature Stories
Dr. Jeannette Potts – Pelvic Pain In Men is Not Prostatitis
If you've been told that your pelvic pain is the result of chronic prostatitis, you are not alone. If you've spent hundreds if not thousands of dollars on various "prostate centric" antibiotics and other prescriptions, you're in the company of millions of men who, it turns out, may not have had prostate or infection problems at all. Dr. Jeannette Potts (Vista Urology, San Jose CA) directed the class "Real Men Get Real Pelvic Pain" at the 2016 American Urology Association Annual Meeting where she and her fellow presenters challenged urologists about the dangers of prostatocentric thinking. She vehemently argues that "the outdated and erroneous misuse of urological and inflammatory terminology to describe, classify and study this [pelvic pain] condition in men has led to misunderstanding, misdiagnosis, mistreatment and misappropriation of research funding."(1)
Dr. Potts represents the modern day, cutting edge approach to pelvic pain diagnosis and treatment that requires a thoughtful assessment of structures and functions inside AND outside of the urinary tract, particularly the pelvic floor muscles and nervous system.
A Remarkable Patient With Pelvic Pain - Atara Schimmel- Artist, Advocate
The purpose of the "Remarkable Patients" series is to highlight patients who have done remarkable things in spite of, or perhaps because of, their bladder and/or pelvic pain. We want to feature patients who are artisans, writers, athletes, small business owners to give them the opportunity to share and promote their work. This month, we feature Atara Schimmel, a creative arts therapist who is the founder of Project Angel, a grass roots movement that is currently lobbying the American Congress of OB/Gyn to create curricula for all pelvic pain conditions. Her work is gorgeous, inspiring and joyful. I hope you will join me in celebrating her artwork! Read more!
What's the Worst Drink For IC/BPS Ever?
Heather Van Vorous, author of First Year IBS, has written some fabulous articles for her website www.helpforibs.com. In one of her "Ask Heather" columns, she answered the question "What's the Worst Drink for IBS Ever?" Given the fact that IC and IBS are common in patients and require similar dietary changes, let's compare diet recommendations. Will my "worst drink for IC/BPS" be the same as hers for IBS? Read on! Read more!
IC Awareness Month
Proclamation Requests MUST START This Month
Every year, we ask patients to ask their City, County, State and/or Federal representatives to honor IC Awareness Month by issuing a proclamation. This will not only allow you, the IC patient, to lobby for the needs of patients in YOUR community but will also give you an opportunity to educate key civic leaders about interstitial cystitis and pelvic pain.
Why is this important? Just two weeks ago, workers in Arkansas filed a lawsuit against their employer because they were not allowed to use the rest room. Many were forced to wear diapers at work. An employer in Alabama told employees that if they left their position to go to the rest room, they would be terminated. Still others were forced to wait for very long periods before they could use the rest room and, then, had just five minutes to run to the toilet and then return to their workstation. US law specifically requires that employers provide prompt rest room access.
So let's use IC Awareness Month to educate others about the needs of patients struggling with IC.. IC patients WANT to work but we need to be in an environment that will support rest room access. Children with IC want to go to school but certainly also need compassionate and non judgemental rest room access. And, of course, we need more educated physicians and community members as a whole! Please join us!
Slogan Ideas NEEDED!
We'll be selecting the official slogan for 2016 early next week but are still looking for new ideas and inspirations!
We know how wonderfully creative and imaginative you all are. So put on your thinking caps!
Here are two previous campaign slogans:
- 2015 - It's time to talk about IC and Pelvic Pain. We Stand Together.
- 2013 - Millions Suffer Few Understand. It's Time To Talk About Interstitial Cystitis.
Any new ideas? Something fresh, intriguing, interesting. Please email firstname.lastname@example.org
(From campaign co-chair Christy Keyes)
IC Family! It's that time again! A time that gives each of us IC patients a platform to use our voices and make them heard! Anyone and everyone, IC patients, our family members, friends, coworkers, etc., can all join in our cause and help us continue to bring Interstitial Cystitis Awareness to the public. Our community is already fired up and ready to take action for this year's September Campaign. Our month...IC Awareness Month! So if you're as fired up as the rest of us are and want to be a part of this year's campaign, We Need Volunteers! Extra Shout Out to our Brothers :0) Here are the specifics for the volunteers we need for this year's 2016 Campaign.
- Media relations
- Patients who want to tell their stories
- People experienced with government and political action
- Creative minds to think about contests etc.
If you believe you're the right person to help in any of these areas, please email me, Christy Keyes, at email@example.com. *Include in your email the Specific Area, listed above, you would like to sign up to volunteer for. Also please include in your email a good daytime telephone number and a preferred email address for the committee.
Upcoming Patient Events
Pelvic Pain Seminar Comes to Colorado Springs in July 2016
The Bridge For Pelvic Pain has announced their first annual pelvic pain seminar to be held this July in Colorado Springs. The seminar is an immersion in learning about chronic pelvic pain from diagnosis and treatment. Attendees will learn about chronic pelvic pain from one of the best pelvic pain clinicians in the world, Dr Robert Echenberg. Dr. Elliot Lander, a pioneer in the use of stem cells for IC, will be speaking about his stem cell research. Other topics include integrative therapies, compounded medications, stress, sexuality, physical therapy and much more! While the seminar is geared toward doctors, PTs, integrative health care providers and medical students, the information and presentations will also be of value to patients, their significant others and caregivers.
When: Saturday July 16, 2016 – 9AM to 4PM
Where: Penrose-St. Francis Hospital & Cancer Center - Colorado Springs CO
Cost: Patients – $25 (Limited Seating Available! Register Early!)
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!
- LiNKA Study For Hunner's Lesions Adds More Locations
- LiNKA Study For Bladder Pain Patients - Ends Recruitment Shortly!
- MAPP Research Network Seeks People with IC/BPS or Chronic Prostatitis/Chronic Pelvic Pain Syndrome (Northwestern University, Chicago IL)
24/7 ICN Patient Support Forum
If you've never met anyone else with IC... If you're feeling alone in your struggle with IC... If you're struggling to figure out why you're flaring... you are not alone! We're here and we can help! The IC Network Support Forum provides hope, comfort and encouragement to patients around the world! We welcome you with open arms. In our forum, you can ask questions, help other patients and, most of all, make friends.
Hang in there! There is light at the end of the tunnel!
ICN member Karen shares a great success story. She's done particularly well by following the IC diet and using Elavil. Read her story here!
Happiness In Spite of It All
If you've wondered if you'll have a relationship after developing with IC, take here! Here's a patient who shares her story and says "There is hope." She's living proof! Read more
Hydrodistention Done... feeling GREAT
Done for diagnostic purposes, this test sometimes helps patients by reducing their symptoms for several months at at time! Read more!
My IC Came Back and I need Help
ICN member Missv needs your encouraging words. After several months without symptoms they have returned with a vengeance. Can you give her some ideas on how to get through this wicked flare. She needs hope! Read more!
Prelief With A Strict IC Diet?
I wanted to know if Prelief is necessary if I follow only the safe foods. I noticed canned veggies cab be below 6 pH so I thought maybe it would be good to use Prelief even though I am being careful as I still have pain? Read more!
At my wit's end... ureaplasma/mycoplasma
ICN member Ginger may have a ureaplasma infection, something that other patients have also struggled with frequently. Her boyfriend has also had a suspicious infection. Anyone else struggling with infections related to intimacy? Read more!
IC Recipe of the Month -
Just in time for the heat of summer, here's a fabulous AND bladder friendly recipe for a sweet tea! If you're looking for more summer tea ideas, check out "IC & Bladder Friendly Sweet Tea!"
Sweet Mint & Basil Iced Tea
(Submitted by ICN Member lisa7688)
The mint and basil seem like an unusual mix but actually blend well together. You could also just make mint iced tea using your own recipe and throw in the basil for something different.
- Half a bunch of fresh mint (about 1 oz.)
- Half a bunch of fresh basil (about ½ oz.)
- ¼ cup honey
- 8 cups water (½ gallon)
Pour four cups of boiling water over the herbs and let them steep for about 10 minutes. Strain the tea, boil the other four cups of water and steep the leaves again. Mix all of the tea and honey together in a large pitcher. Taste test it. If it's too strong, add a little water to your liking. Refrigerate for at least two hours before serving.
What's New In the ICN Shop! - www.icnsales.com - 800.928.7496
1. Order Now For The Summer Months
CystoProtek and our carob candies are NOT heat stable and are very difficult to ship during the hot summer months. In fact, if it's over 90 degrees, we will NOT ship it because they may melt. We are reminding everyone who lives in warm areas to order early and get your summer supply this or next month! The sooner the better!
2. OTC Neutraceuticals (Step One Interventions)
3. IC Optimist - Spring 2016