Interstitial Cystitis Network Newsletter

Early April 2014

Sponsored by: Prelief - CystaQ - Parson's IC Solution - BladderQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - Squatty Potty - PainShieldMD

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Upcoming Patient Conferences You Should Know About!

IC Event in Fairbanks, Alaska - April 5th, 2014

Dr. Karl Baudick will be giving a thirty minute lecture on interstitial cystitis at the annual “A Women’s Affair” conference in Fairbanks, Alaska on April 5, 2014. Speaking at 10:30AM, he is one of several physicians providing information on common women’s health issues. Learn more at: http://fairbanksevents.com/wp-content/uploads/seminar-schedule-WA14.pdf

Alliance For Pelvic Pain - May 31-June 2, 2014 - New York City

Due to extreme weather, the Alliance for Pelvic Pain conference was postponed from March to late May! Join some of the top chronic pelvic pain specialists in the country for this special 2-day educational retreat for patients coping with chronic pelvic, sexual and genital pain with complex symptoms involving one or more of the following: IC, Vulvodynia, Vestibulitis, IBS, PFD, Non-bacterial Prostatitis, PNE, Lichen Sclerosis, Endometriosis and other pelvic and genital pain disorders. Learn more at: http://www.allianceforpelvicpain.com

 

New IC Optimist Released

Released early last month, the Winter 2014 issue of the IC Optimist, the ICN's patient quarterly magazine, is now available and most subscribers should have received their copies.

Our feature story "Stem Cell Therapy, SVF & Liposome Treatment" features an interview with Dr. Eliot Lander of the California Stem Cell Treatment Center. He shares the very encouraging results he's seeing in his research with stem cells and growth factors derived, in case your wondering, from a patients own fat. The goal of this therapy is to help the bladder to repair itself, aka as rejuvenative medicine. He's also the only doctor in the country using liposomes filled with Elmiron as a bladder coating, likely the best drug delivery system ever used with this bladder coating.

This issue also provides an in-depth, exhaustive review of Pelvic Floor Dysfunction, the most common related condition to patients with IC/BPS featuring articles by four prominant physical therapists: Stephanie Prendergast, Elizabeth Rummer, Amy Stein and Mary Ruth Velicki.

Read more about this issue

 

Popular Doctors in CA & PA Changing Practice

Dr. Chris Payne Leaves Stanford To Start New Clinic

Dr. Christopher Payne, one of the best interstitial cystitis and pelvic pain specialists in the world, announced that he was leaving Stanford Hospital at the end of March 2014 to go into private practice. During his remarkable tenure at the Stanford School of Medicine, Dr. Payne has been a veritable lifeline for thousands of IC patients who were referred to his clinic by urologists in the western united states. Patients not only appreciate his kindness and compassion, but also his balanced approach to treating IC and chronic pelvic pain. Read more and learn where he is going here!

New Pelvic Medicine Center Launched in Greater Philadelphia Area

Dr. Susan Kellogg-Spadt and Jennifer Fariello CRNP, formerly of the Pelvic and Sexual Health Institute in Philadelphia, have joined forces with Bryn Mawr Urology to create a new division dedicated to pelvic health. The “Center for Pelvic Medicine” was launched earlier this month. Known for both their expertise and exceptional compassion working with patients struggling with IC/BPS and pelvic pain, they are a formidable team that will, undoubtedly, become a refuge for patients who have struggled to find care or felt disregarded and ignored. Read more about it!

 

Got Green Urine? What the color of your urine says about you!

The Cleveland Clinic released a fabulous infographic to help patients understand why their urine changes color and if that change is something to be worried about. Normally pale yellow in color, urine may have a variety of colors, from brown, orange, red to clear.

If your urine is dark yellow, amber or brownish, you are showing signs of dehydration and aren't getting enough water.

If your urine is clear, you're drinking a lot of water, potentially too much water, and may need to cut back. If you drink too much water, you may be disrupting the normal levels of minerals (such as potassium) in your body.

If your urine is pink or reddish, you may have recently eaten beets, blueberries or rhubarb! If not, then it could be blood or, as the Cleveland Clinic suggests, lead or mercury poisoning. A phone call to your doctor should always happen if your urine is reddish in tone.

Orange or brown urine is a sign of dehydration or, perhaps, liver disease.

Got green or blue urine? There are some rare diseases that can produce blue or green urine, as well as some medication can can cause urine to turn bluish (i.e. Uribel).

Foaming or fizzing urine could simply be from a very powerful stream or, perhaps, some excellent protein from your diet or a kidney problem.

Interstitial cystitis patients often have microscopic blood in our urine but rarely is it visible. Some patients also report having little pieces of whitish tissue which could be small pieces of the bladder wall.

If you see anything strange in your urine or you have any doubts, it's worth a phone call to your doctor with a request for urinalysis to ease your worries and initiate an important conversation about your health.

See the large infographic and read their original article here!

 

Recent Blogs, Videos & Articles on IC, Pelvic Pain & Topics of Interest

 

Parson's IC Solution Kit Now Available

University CompoundingUniversity Compounding Pharmacy is delighted to announce that a prepackaged bladder instillation is now available in the USA. Named after its inventor, C. Lowell Parsons MD (UCSD), the Parson's IC Solution uses buffered lidocaine and heparin to immediately relieve the symptoms of urinary urgency, frequency and pain associated with interstitial cystitis and can last for up to 12 hours.

Dr. Parsons is best known for inventing the FDA approved oral medication Elmiron and the development of the diagnostic PUF Questionnaire. In his clinic at UC San Diego, he has treated more than 7000 patients making him one of the most experienced clinicians in the world. Read more about it!

University Compounding Pharmacy can deliver all medications prescribed for IC, overactive bladder, pelvic floor dysfunction and prostatitis directly to your home, including topical estrogen and pain relief creams.

 

Clinical Trials You Can Participate In

Gralise Study Seeks Men and Women With Pelvic Pain! Yes MEN!!!! Yay!

The Rehabilitation Institute of Chicago is conducting a Phase 4 clinical trial studying the pain relieving effects of a study drug, Gralise, a novel, long acting gabapentinoid, for people who experience chronic pelvic pain. Subjects with Irritable Bowel Syndrome, Interstitial Cystitis, Ulcerative Colitis, and Prostatitis are being recruited.

Learn more!

NJ Research Study Seeks Women With Vulvodynia

Given the high number of interstitial cystitis patients who suffer from vulvodynia (and/or prostatodynia in men), we think it's important to share related research studies and clinical trials that you might be able to participate in! The Women's Health Institute at Robert Wood Johnson Medical School, part of Rutgers, The State University of New Jersey, is studying a medication that may reduce pain. Learn more!

 

The Latest Research (Information is Power!)

Self-Help Tips

Five Ways To Find Comfort When Struggling With Bladder Or Pelvic Pain

When physical therapist Mary Ruth Velicki was diagnosed with IC, she endured the same pelvic pain, frustration and anger that most IC patients struggle with. In this new article, she shares some of her favorite tips that helped her through the worst of it. From using relaxation to reduce painful muscle tension to writing in a journal to help reduce the undeniable emotional stress that pain creates, her tips can only help those struggling to find physical, mental and emotional relief. Read her article here!

Do you struggle with vaginal dryness?

Menopausal women who cannot use an estrogen product to relieve dryness can suffer terribly, particularly if the traditional OTC products aren't effective. Earlier this year, we learned about AQ Skin Solutions VRS Serum while interviewing Dr. Eliot Lander for an article in our last magazine. The VRS Serum is FDA approved for the treatment of vaginal dryness using a line of growth factors.

ICN customers can receive a 15% discount if you use the promo code: AQ15OFF

Learn more about it!

Do you consider yourself a medical mystery? Try CrowdMed.com

Here's a website that we think is very cool! If you have an unusual presentation of health symptoms and have been unable to get a diagnosis, you might want to try the free service offered by CROWDMED.COM. You can:

#1 - Create Your Medical Case (no fees or charges required)

#2 - Offer A Cash Reward (none required)

#3 - Collaborate with Medical Detectives who will review your case, ask you questions and offer a case discussion.

#4 - Get Your Results - Receive a comprehensive report that lists possible diagnostic option, complete with explanations that you can then share with your doctor to discuss your future care,

Learn more about it on their website at: http://www.crowdmed.com

 

Find a Provider Database Update!

 

The ICN "Find A Provider" database has helped thousands of IC patients find urologists, urogynecologists, physical therapists and pain specialists in their local community. Now available in a google map format, you can search by zip code, specialty and so forth! We're excited! It's very new, different and should work well on mobile phones as well! Click here to search our database

Medical Provider Recommendations Needed for USA, Canada, Australia, New Zealand and any other countries!!

Our database is very different from others. It's based almost entirely on patient recommendations! In other words, patients like you have shared the names of doctors that have you treated you kindly and professionally! If you've found a fabulous doctor, physical therapist, pain specialist, please share their name with us using the doctor recommendation form below! We also welcome submissions directly from medical care providers who work directly with IC, pelvic pain, pelvic floor dysfunction, prostatitis and pudendal nerve entrapment.

Click here for our doctor recommendation form!

 

Support Group Listings Updated!

As we've been migrating our website over into a new, expanded Word Press format, we realized that having support groups mixed with provider listings was just inefficient. So, we've broken the listings out into their own pages! If you've never met another IC patient, this is your chance to meet some fabulous men and women who have a lot to share! You are not alone in your journey with IC. There are groups around the world just waiting to help! Please check the lists below to find a group near you!

If you have a support group that you would like listed please send your information to: supportgrouplistings@ic-network.com or call 707.538.9442!

Support Group Resource Center - How to start a new group

Some of you have cruised through the lists above only to see that there are no groups in your area. It happens. Group leaders burn out, move away or have other life issues happening. We encourage you to start a group in your community if there isn't one and we've built a new Support Group Resource Center chock full of ideas to help you get started!

Support Group Guest Speakers

Is your support group looking for guest speakers? ICN Founder Jill Osborne is booking appointments for the Spring & Summer for speaking at support groups using conference calls or by video using skype! NO CHARGE!

As a support group leader for twenty years, she loves talking about IC and helping groups move forward! She's happy to take questions from the group or, if you'd like, can cover recent developments in IC, treatment options, self-help, diet and much more! If you're interested, send her an e-mail at: jill@ic-network.com.


 

IC Resources From The ICN Mail Order Center

www.icnsales.com - 800.928.7496 or 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!

OTC Pain Relief Products, Cd's & Books

Stash Herbal Teas

We've brought in five new STASH teas to our store that we think you might love! Remember, everyones bladder is different. It takes some trial and error but most sensitive bladders should tolerate these well.

 

Stash Chamomile Nights Herbal Tea

Chamomile Nights

Herbal Tea

Stash Maple Apple Cider Herbal Tea

Maple Apple Cider

Stash Cinnamon Vanilla Herbal Tea

Cinnamon Vanilla

Stash Cinnamon Apple Chamomile

Cinnamon Apple Chamomile

Stash Organic Cascade Mint Herbal Tea

Organic Cascade Mint

 

Our Favorite New Snack - KIND Nut Bars

Kind Nut BarsIt is so hard to find healthy, IC friendly snacks! After all, pears and blueberries get a little boring after a while, right?? Well, if you haven't heard about KIND nut bars, you're in for a treat. KIND bars are made from all-natural whole nuts, fruits and whole grains. No secret ingredients and absolutely nothing artificial here. Just a delicious way of getting your body essential nutrients like fiber, protein and antioxidants (to name a few).

We've fallen in love with these very healthy bars and we hope you will too!!!! There are 20 varieties but we're starting with just two flavors that should be IC friendly because, well, we're eating them every day and not flaring - (1) ALMOND & COCONUT and (2) ALMOND & APRICOT, covered in yogurt!

Introducing FibroProtek

FibroProtek is designed to fight fatigue and help the body deal with muscle pain. It is the latest supplement developed by Dr. Theoharis Theoharides as part of the Algonot line of supplements. Dr. Theoharides suggests that it be used in conjunction with CystoProtek to increase energy and reduce muscle pain. It contains:

Coenzyme Q10 - 85 mg

Carnitine - 170 mg

Luteolin (Pureolin) - 255 mg

Quercetin - 170 mg

White Willow Extract

Learn more!