ICN Weekly Update – May 1, 2014

IC, PFD & Pelvic Pain News

– Amy Stein, author of Heal Pelvic Pain, Appeared on the Dr. Oz Show

Our gratitude to Dr. Oz for covering pelvic floor dysfunction this week on his national show featuring Amy Stein PT, author of Heal Pelvic Pain. In a segment called “Pain Down There” Dr. Oz does an excellent job describing the pelvic floor, with some fun visuals about how complex and full the pelvic floor cavity is. He shows how the pelvic muscles stretch with pregnancy, weight gain and aging. He shares the symptoms common with pelvic floor dysfunction, including bladder, bowel and back pain.

Amy then demonstrates two easy exercises to help pelvic floor and abdominal tension! Watch it here! (It’s AFTER the segment on con artists).

– Dr. Drew & Loveline Crossed The Line, Suggested IC & Endometriosis Patient Seek Psychiatric Care and Outraged Patients Seek Justice in Social Media

If you missed the hullaballoo last weekend, you missed perhaps the biggest IC protest in the last twenty years when Dr. Drew Pinsky had the audacity to suggest that IC and endometriosis were garbage bag diagnoses and that patients should seek psychiatric care. Thousands of IC and endometriosis patients used social networking to demand an apology and share their stories. ICN volunteer & IC author Julie Beyer RD led the charge with protests on Facebook and Twitter which mobilized yet more patients.

Their protests were successful and Dr. Drew did issue an apology, with a promise that he’ll do a show on endometriosis and interstitial cystitis in the future.

Read Our Summary of Events and Listen to the Original Broadcast and Apology

 

 

Watch Jill’s YouTube video response!

– Good Housekeeping Features IC

Many thanks to author Linda Melone for featuring IC in her article “10 Symptoms That May Fool Your Doctor.” Interstitial Cystitis is the first featured condition for patients who struggle with frequency and burning, yet no infection is found. Read it here!

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What Are Patients Talking About – Stories, Questions, Requests for Support

  • “My Family Doesn’t Believe Me” – Do you struggle with family members and/or a spouse who just don’t believe you? This patient does and the responses she’s receiving are an eyeopening glimpse to what patients struggle with and how they stand strong in the face of such criticism! Read it here!
  • “After 21 years of IC, Finally joining up” – An IC patient shares her story and how her symptoms were caused by a hip injury and muscle tear. Several other patients share their muscle injury stories. Read it here!
  • “Success Eating at Disneyworld” – If you’re planning to visit Disney World this year, here’s a great post with a list of foods and suggestions at various areas around the park! Read it here!
  • “Is there any reason to get a cysto if I don’t intend to go on meds if I am diagnosed?” – This IC patient asks if she should consider having a cysto if she only wants to pursue alternative therapies. Read it here!
  • “Lower Back Pain” – One member asks if patients also struggle with low back pain. Her doctor completely dismissed her symptom as being unconnected to IC. Share your thoughts and read more here!

Take A New Survey in the ICN Survey Center

Title: How Much Does Interstim Cost: The Short & Long Term Costs of Therapy

When patients are advised to do a medical procedure and/or a surgical procedure such as Interstim, getting a clear idea of the cost is challenging. The reality is that patients struggling with severe IC are often desperate and willing to try just about anything. But, do you really know the cost that that procedure might incur?

One patient was shocked to receive a bill for more than $60,000 for the device even after she was assured it would be covered by insurance by her doctors office, the hospital and her health insurance company. Had she known, she would never have agreed to have the surgery because she simply can’t afford it.

This got us thinking. Has anyone really attempted to collect the actual costs incurred for Interstim® therapy in the USA, both short and long term? We thought we’d try because new IC patients need to know the potential costs of a treatment that could require multiple surgeries.

We’ve created a survey that asks Interstim® patients to share their experiences and costs.

We would also be interested in seeing actual bills (with your name and identifying information removed) so that we can provide examples to patients so that they have an accurate understanding of what they are getting in to financially. YOu can remove all identifying information from bills before you share them with us.

No personal information will be shared nor do you need to give us exact figures. We’re just looking for your best estimates. At the end of the survey, we will ask for your state so that we can look at any regional trends.

Take The Survey Here!

Events

– New IC Diet Webinar! Helping Interstitial Cystitis Patients Make Confident Dietary Choices – May 8, 2014 (2 to 4pm ET)

 

Julie Beyer, MA, RDN (author of Confident Choices: Customizing the Interstitial Cystitis Diet, Confident Choices: A Cookbook for IC and Overactive Bladder, and Interstitial Cystitis & Interstitial Cystitis: A Guide for Nutrition Educators) will be presenting a new version of her IC Diet webinar with Dietitian Central, a professional continuing education company.

Not only is this webinar is a MUST for anyone who works with interstitial cystitis patients and counsels them on diet (providing 2 continuing education credits for dietitians, nurses, and physical therapists), but this a great webinar for patients wanting more information about the IC Diet.

Highlights include a history of the interstitial cystitis diet, updated research about how diet can affect an IC bladder, and additional tools for the provider and patient to make living with IC/painful bladder easier.

This is an interactive webinar, so bring your questions!

To register for this excellent educational opportunity, visit http://www.dietitiancentral.com/ceu/dietitian_webinar.cfm?art_id=138&cid=93

– Allliance for Pelvic Pain – May 31st – Jun 1st, 2014

This annual weekend retreat was rescheduled from February to late May due to the terrible weather this past winter. This two day retreat is created for female and male patients coping with chronic pelvic, sexual and genital pain with complex symptoms involving one or more of the following: Interstitial Cystitis (IC), Vulvodynia, Vestibulitis, Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Non-bacterial Prostatitis, Pudendal Neuralgia, Lichen Sclerosis, Endometriosis, and other pelvic and genital pain disorders.

Early Bird Registration Fees Ends today! Learn more here!

New DVD & Home Program for Pelvic Pain & Pelvic Floor Dysfunction

New DVD - Healing Pelvic and Abdominal PainJust Released! Healing Pelvic and Abdominal Pain:
The Ultimate Home Program for Patients

Finally, a video about pelvic pain and pelvic floor dysfunction that patients can follow from the comfort of their home. Produced by Amy Stein DPT, this two hour video shares the Beyond Basics Physical Therapy Home Program for the management of pelvic and abdominal pelvic pain (and pelvic floor dysfunction) in men, women and children.

The goal of this video is to explain the various symptoms and the possible causes, of pelvic and abdominal pain, and assist men, women and children of whom suffer from pelvic, abdominal and back pain, through gentle external and internal massages and stretches.Click here to learn more about it!

By | 2017-04-01T23:51:46+00:00 May 1st, 2014|ICN Announcements, Industry News, Interstitial Cystitis Network Blog, News|Comments Off on ICN Weekly Update – May 1, 2014

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.