ICN E-Newsletter - July 2016
Trouble reading this issue? Read it on the web here!
New "Living With IC" Video
IC Treatments in 2016 - Do you know the six steps of treatment?
Are you confused about your IC treatment options? Do you believe that you've tried everything? Not sure what you should try next? ICN President Jill Osborne reviews the AUA Six Steps of Treatment for Interstitial Cystitis. This simple approach to IC treatment puts your safety first and works for many! Watch this video for a basic introduction to your IC treatment options. Let us know what you think! @icnetwork @icnjill #icsubtypes
Consumer Alert - IC Patient Develops Aneurysm After Using Cipro
Did you know that Cipro has several serious potential side effects? One IC patient developed an aortic aneurysm. Read about the recent FDA alert and share with your IC friends. This is a very important safety alert! Read it now!
A Remarkable Patient With Pelvic Pain - Louisa Joy Wise - Artist, Musician, Mother
The healing power of music is undeniable. Whether you love rock, rap, folk or classical, music often makes us feel very VERY good. Louisa Joy Wise's music inspires happiness! Take a moment and listen and you hear not only an accomplished international fiddle player but a voice equal to many country and folk stars. Read more!
ICN Research Center
The DIPP Mystery - Why are IC patients deficient in some good bacteria?
Researchers have discovered that IC patients have significantly different levels and types of bacteria in our digestive tract (bowel) rather than our urinary tract (kidney, bladder). These distinct deficiencies (known as DIPP) hint that the lack of beneficial bacteria as well as an overabundance of pathogenic bacteria play a role in the cause and intensity of bladder and pelvic pain. This vital research is worth the consideration of both patients and medical care providers who often turn, inappropriately, to antibiotics.
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 THIS MONTH!
- MAPP Research Network Seeks People with IC/BPS or Chronic Prostatitis/Chronic Pelvic Pain Syndrome (Northwestern University, Chicago IL)
New Publications & Free Articles
- Sensory hyperinnervation distinguishes bladder pain syndrome/interstitial cystitis from overactive bladder syndrome.
- BotoxA For Bladder Pain Syndrome/Interstitial Cystitis - free full text article
- Treatment effect of cyclosporine A in patients with painful bladder syndrome/interstitial cystitis: A systematic review. - free full text article
- Urinary Metabolomics Identifies a Molecular Correlate of Interstitial Cystitis/Bladder Pain Syndrome in a Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network Cohort - free full text article
- Mast cell activation syndrome in pain syndromes bladder pain syndrome/interstitial cystitis and vulvodynia.
- Combined site-specific sacral neuromodulation and pudendal nerve release surgery in a patient with interstitial cystitis and persistent arousal.
- Clinical guidelines for interstitial cystitis and hypersensitive bladder updated in 2015.
The IC Diet - Simply Delicious: Low Acid Eating Made Simple
The IC Diet Project - IC Friendly Summer Salad Ideas
It's summer and you know what that means; it's time for salads! But, if you are a person with acid sensitivity you are probably asking yourself, "What can I put on my salads?" My answer is, "Plenty!" The fact is, salads don't have to be acidic at all. The trick is to build the salad itself with a variety of ingredients that appeal to all of your senses so that you aren't relying solely on the salad dressing for that burst of flavor. Read more!
Summer IC Friendly Drink Ideas
If you're looking for a refreshing yet bladder friendly beverage! Enjoy!
Interesting Blogs On Pelvic Pain
- Millions of women are injured during childbirth. Why aren't doctors diagnosing them? - Cosmopolitan shines a rare light on a topic few ever discuss, pelvic floor muscle injuries during childbirth. If you've suffered with chronic pelvic pain, pain during intimacy, urine or fecal incontinence after childbirth, you must read this article. It's excellent!
- Physical therapy for Male Pelvic Pain - Don't Let The Penis Come Between Us - Stephanie Prendergast MPT - Pelvic Health and Rehab
- A Mesh Of A Situation- Elizabeth Rummer MSPT - Pelvic Health and Rehab
- What Do Omega 3 Fatty Acids Have to Do with Interstitial Cystitis/Painful Bladder Syndrome? - Julie Beyer RD - NutraConsults
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.
- Share Your Patient Story
- How IC Is Diagnosed
- Treatment Options
- The IC Diet
- Self-Help For IC
- Managing IC Flares
- Health Insurance & Disability Benefits
- Related Conditions to IC
- Social Life
- Meet Others by Location
- Spirituality, Faith & Positivity
Current Forum Stats
Discussion Threads: 78,961 - Posts: 626,137 - Active Members: 42,048
IC Awareness Month - Have you sent in your proclamation request yet?
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.
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!
Second Pudendal Neuralgia Conference - November 5, 2016
The Pudendal Neuralgia Association is holding their second national conference on November 5, 2016 in Waltham MA. Learn more about the speakers and event at: http://pudendalassociation.org/conferences.html
IC Food List App Updated - Android Version
Oh the joys of technology. Due to a simple programming error in the first version of the ICN Food List android app, we had to rebuild and update it. Unfortunately, this meant that we had to create a brand new app in the Android store. So, for those of you who purchased the first app, you will need to delete it and then download the new, updated app.
New Customers - Buy it here for just $1.99
Existing Customers - E-mail firstname.lastname@example.org for coupon for free upgrade!
What's New In the ICN Shop! - www.icnsales.com - 800.928.7496
Mama Strut Reusable Hot & Cold Packs
New in July 2016 - We love finding new products that can help patients who suffer with pelvic pain. We found these earlier this spring and fell in love! Mama Strut reusable hot and cold packs are perfect for patients who need to comfort their "nether" region. Shaped like a menstrual pad, they fit comfortably in the crotch area and may help soothe rectal pain, vulvar pain and pelvic floor muscle tenderness. They can be frozen for cold or heated in the microwave and contain instructions on the back of the pad.
IMPORTANT - DO NOT place frozen or hot pack directly on your skin. This, like all other hot or cold products, should be wrapped with a small towel first to protect the especially tender skin in your crotch area.
Each package contains two pads. Dimensions: 7" long by 2.5" wide
Need a little IC friendly exercise? These programs were created specifically for patients with pelvic pain.
Low Acid Coffee
Coffee is always a controversial topic in the IC community. Yes, many patients simply cannot drink it, especially those with Hunner's lesions or severe bladder irritation. However, patients with mild symptoms or those struggling more with pelvic floor muscle tension rather than bladder irritation, may often tolerate them well! Simpatico receives outstanding reviews for its smooth, rich flavor and low acid levels! If you're ready to give coffee a try again (and don't try too soon), we suggest trying this brand first!
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!
ProSirona & Neuroquell for pain relief
MultiRight Low Acid MultiVitamin
Chair Cushions for long summer car trips with family and friends!
Acacia fiber to stay regular and reduce constipation
OTC Neutraceuticals (Step One Interventions)