Interstitial Cystitis Network Newsletter

ICN E-Newsletter - Late May/Early June 2017

Sponsored by: Beaumont Urology - Desert Harvest Aloe - Vista Urology - Prelief - Acid Zap - CystaQ

Quick Links: Join the ICN - 24/7 ICN Support Forum - Find A Specialist - Make A Donation

Trouble reading this issue? Read it on the web here!

 

ICN Patient Assistance Line Suspended For Six Weeks

I was fine until I wasn't - Hysterectomy & Possible Uterine Cancer

If you've followed the IC Network for some time then you know that I share a lot of my own personal experiences with IC and its related conditions. I've always believed that everything that I learn in managing my own health has the potential of helping others. Whether it's trying to figure out what food might have triggered my IC to managing pain, I let it all hang out.

For the first time in history of the IC Network, I must take medical leave. I'm having a hysterectomy on Tuesday the 23rd out of concern that I may have uterine cancer. You can read more about this story on our website and in the editorial of our Spring IC Optimist.

I won't be able to take patient phone calls for several weeks as I recover, perhaps through the end of June.

People of ask "where does the support group leader go for support?" Well, I'm coming to you our members and readers. I really do need your good thoughts and wishes. This has been a very scary couple of months for me and I hope that I will have good news to share in my next newsletter. Wish me luck!

 

Spring 2017 IC Optimist Released

 

The Spring 2017 IC Optimist is currently being printed and will be mailed to our subscribers shortly. Print subscribers should expect their copy the first week of June. Our e-subscribers should have it in their in box!

 

In this issue:

(1) Editorial: I Was Good Until I Wasn't - Jill's Story With Possible Uterine Cancer

(2) Feature Story - I Insist! My Pelvic Pain is My Tarlov Cysts

(3) Feature Story - Is Your Internal Thermometer Working Correctly? Persisting Pain and Your Thyroid

(4) ICN Survey Center - IC Patients Find Medical Marijuana Remarkably Helpful

(5) 2016 MD & PT of the Year Announced

(6) The Latest Research

(7) Clinical Trial Announcements

(8) Patient Story - Interstitial Cystitis and Porphyria

(9) Consumer Alert - EWG Dirty Dozen & Clean Fifteen

(10) Self-Help Tip: Eight Potential Causes of Bladder Injury

(11) IC Diet Project: Celebrating Mexican Cuisine

Get your copy:

Subscribe to the IC Optimist

Buy A Single Copy (US Mail)

Buy The Electronic File (pdf)

 

IC & Pelvic Pain News

Dr. Jeannette Potts Leads Male Pelvic Pain Course At AUA 2017

 

 

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. Read More

Dr. Potts and her husband Christopher Payne MD, provide pelvic pain care for patients in the Western United States. If you are a man struggling with receiving a diagnosis or finding effective treatments, she would be an excellent second opinion. Learn more on her website - http://www.vistaurology.com

The Broad Picture of IC by Dr. Ken Peters

BY FAR, one of the best articles on IC written in a decade!

"The most common missed diagnosis in the IC patient is pelvic floor dysfunction that results in a hypertonic contracted state of the levator muscles – a chronic spasm, in essence – that in turn leads to decreased muscle function, increased myofascial pain, and myofascial trigger points... We and others have reported that up to 85% of patients labeled with IC/BPS have been found on examination to have pelvic floor dysfunction or a diffuse pelvic floor hypersensitivity... If the pelvic floor is in spasm, this can result in urinary frequency, hesitancy, and pelvic pain."

Dr. Peters is Chairman of the Beaumont Health Urology Department, long considered the most dynamic IC research center in the USA. He is also a member of the ICN's Medical Advisory Board. Awesome IC clinician and researcher. Read it now!

 

IC Activism

Were You Denied Disability Insurance By Metlife?

What if a disability insurance company told you that all you need to work with interstitial cystitis (IC) is ready access to a restroom? That’s what MetLife told me! I’m going to fight it. Make your voices heard about Chronic Pain Syndrome. Stand with me before Congress, the Federal Insurance Office, the National Association of Insurance Commissioners, the Department of Financial Services, the Consumer Financial Protection Bureau, and the world to tell your story. Let us get the word out about insurance companies’ unfair practices which broadly impact all of us with this disease and similar conditions. If you would like to join me, Rosemaria Chiarella, in this effort, share your story, or obtain additional information, please email me at fightmetlife@gmail.com.

 

Current Clinical Trials

Aquinox 301 Leadership Study Seeks Men & Women in USA, Canada & Europe

Women and men needed to participate in a clinical research study of an oral investigational drug for interstitial cystitis/bladder pain syndrome (IC/BPS). The purpose of the LEADERSHIP 301 Trial is to learn if an investigational drug, AQX-1125, may reduce the bladder pain of interstitial cystitis/bladder pain syndrome (IC/BPS) and relieve other symptoms such as urinary urgency and frequency. The study drug is a new type of medication that may help reduce inflammation in the bladder. Read more!

 

Self-Help Tip

Exercise & Fitness Strategies For IC/BPS

IC & Driving: Tips For Surviving Long Drives & Rides

Many of you are planning your summer vacations and asking "Can I survive a long car ride with IC?" If commuting or taking long car rides exacerbates your bladder or pelvic pain symptoms, you are not alone. The first epidemiological studies on IC found that 50% of patients reported pain and discomfort while sitting in a car. The vibration from bumpy roads, as well as constant starts and stops, are jarring to the bladder and pelvic floor muscles. Throw in restricted restroom access and/or the perception that a restroom might not be available, it’s only natural that patients find rides stressful and unenjoyable. Fear not! Here are some strategies that can help.

Read the story here!

 

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The IC Diet - Simply Delicious: Low Acid Eating Made Simple

IC Diet Project - What Do You Mean No Tomatoes

(By Julie Beyer RDN) Before I was diagnosed with interstitial cystitis (IC or bladder pain syndrome), I distinctly remember thinking, “My bladder is allergic to tomatoes.” I couldn’t think of any other reason why, when I ate everyday family meals like spaghetti, chili, goulash, pizza, or lasagna, that I experienced pain, urgency, and frequent urination. Of course I ran to the doctor repeatedly to see if I had urinary tract infections, but when the tests kept coming back negative, I couldn’t imagine any other explanation. I just had to be “allergic”’ to tomatoes. Not only was this frustrating from the standpoint of meal planning, but as a nutritionist, I knew that tomatoes provided some incredibly beneficial nutrients and life giving bioflavonoids such as vitamins C and K, potassium, biotin, lycopene, beta carotene, and more. Read more!


24/7 ICN Patient Support Forum

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.

Current Forum Stats

Discussion Threads: 80,450 - Posts: 636,670 - Active Members: 44,766

 

What's New In the ICN Shop! - www.icnsales.com - 800.928.7496

Coming in June! A New Low Acid Coffee! Bella Rosa Coffee!

SUMMER SUPPLIES!

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!

 


Chair Cushions for long summer car trips with family and friends!


Basis soap for sensitive skin to wash after a dip in the pool!

Acacia fiber to stay regular and reduce constipation

2. Desert Harvest RELEVEUM For Vulva & Perineal & Shingles Pain

If you struggle with vulvodynia and/or perineal pain, Desert Harvest Reléveum is worth checking out. It's a 96% natural skin care cream that contains 4% Lidocaine cream and certified organic Aloe Vera gel to help with the irritation, itching and burning associated with vulvodynia, and other perineum irritations. Contains no irritating parabens or chemical additives and contains a unique variety of natural botanicals like Calendula and chamomile to enhance the soothing and healing properties of the Reléveum compound.

Learn more!

3. GingerBee Heating Pads Back In Stock

The GingerBee microwaveable pelvic heating pad offers penetrating heat to relieve bladder pain, pelvic pain, muscle tension and stress. This is a must have for everyone. With a triangular shape, it fits comfortably over the pelvis yet isn't too heavy to be uncomfortable. Learn more!

4. Mama Strut Reusable Hot & Cold Packs

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

Learn more!

5. OTC Neutraceuticals (Step One Interventions)

Prelief

CystoProtek

Cysto Renew

CystaQ

Desert Harvest Aloe

6. Best Sellers

 


The IC Solution

Prelief
Prelief

MultiRight Low Acid MultiVitamin
MultiRight Low Acid MultiVitamin