This is the monthly free e-newsletter from the IC Network sharing the latest news, research, feature articles, self-help tips and more! You can sign up to receive it here!

1. New Spring 2015 IC Optimist Released

The IC Optimist is the quarterly patient and provider magazine for members of the Interstitial Cystitis Network. Each quarterly issue contains practical, helpful and informative articles written by IC experts that will give you hope. From the latest research to interviews with the best clinicians in the world, you’ll find practical tips in every article that will help you better understand and/or manage your interstitial cystitis. Your purchase of an ICN Subscription or individual issue (e-book or print) underwrites our free IC support services.

In this issue:

  1. Editorial: Cyclosporine Offers Hope for Intractable IC
  2. Feature Story: Where’s The Yeast? When Pelvic Floor Dysfunction Mimics Yeast Infections
  3. The Latest Research: Treating IC and Pelvic Pain with Acupuncture
  4. Feature Story: Is Body Image Affecting Your Self-Esteem?
  5. Self-Help Tip: How Much Sugar Do You Eat Each Day
  6. SSA Offers New Ruling on Interstitial Cystitis
  7. Clinical Trial News
  8. The Latest Research: Hep-Lido-A Significantly Reduced Bladder Pain and Urgency
  9. Feature Article: Compounded Medication Coverage Can Be Challenging
  10. Patient Story: Barbara Flanigan – My Quest To Discover The Cause of IC
  11.  IC Diet: IC Breakfast Ideas

How You Can Purchase it!

2. Self-Help Tip – Do You Ask For Antibiotics Every Time You Have An IC flare?

Ten Reasons Why You Should Not Self Medicate With Antibiotics For an IC Flare

When the symptoms of interstitial cystitis and prostatitis virtually mimic that of a bladder infection, it’s only natural for patients and doctors to contemplate treating urinary symptoms with an antibiotic. Go ahead! Admit it! You’ve probably raided your medicine cabinet in the middle of the night to take an antibiotic that you’ve saved. You might have even ordered antibiotics off of the internet. A desperate, burning bladder or prostate calls for desperate measures, right? Wrong!

Read more here!

3. AUA 2015 Highlight

Chronic Pelvic Pain Syndrome Webcast

The American Urological Association annual meeting is often the highlight of the year for researchers and clinicians working with interstitial cystitis. This year, the classe, lectures and research focused to a great degree on pelvic pain syndrome. One highlight was Drs. J. Curtis Nickel, Dan Shoskes and Michel Pontari who presented the cases of two men struggling with pelvic pain. Their key point was that urologists should not assume that all men with pelvic pain have prostate infection nor should every case be treated with antibiotics. (The same can be said for women struggling with recurring bladder symptoms). Rather, they showed that if a physician assesses then treats ALL of the conditions contributing to pelvic pain (i.e. pelvic floor dysfunction, other neurological related conditions, etc. etc.) using the UPOINT Diagnostic System, 77% of patients have symptom improvement and, for some, a complete resolution of their symptoms. Read the full article and watch the video here!

AUA IC Guidelines Updated Webcast

Dr. Phil Hanno presented the updated AUA Guidelines for the treatment of interstitial cystitis. First announced last fall, these changes are fairly mnor. Manual physical therapy to reduce trigger points was added to Step Two treatment options. Botox was reclassified from a Step Five to a Step Four treatment based upon new research which showed that a lower dose reduced the risk of urinary retention. Read the article and watch the video here.

AUA Research Studies

4. Hot Conversations in the ICN Support Forum – What patients are talking about!

Causes & Solutions For the IC Belly

New ICN member Cindog writes from England. She is 23 years old and has had symptoms for eigh months, particularly severe belly bloating. She’s looking for other patients who have struggled with bloating! Please give her some encouragement here!

Newly diagnosed wth Lyme

If you have IC and have also been diagnosed with lyme disease, we have a new member who can really use your advice and encouragement. She’s just been diagnosed with Lyme is now considering her treatment options but is not sure what she should do next! She’s looking for feedback! Read more here!

Private Disability Insurance

Have you applied for private disability insurance through your employer. ICN member scubascott asks for feedback on the process. Help her here!

MIcroscopic Blood In Urine

Here’s a great question. How often do you have microscopic blood in your urine?? Always?? Just during flares?? Or only during bladder infections. ICN Dottie Marie is asking! Read more and participate in the discussion here!

Suggestions for pain with intimacy

We have an ICN member who was in remission for 9 years but is now in a mild flare. The challenge is that her partner is returning shortly and she’s looking for tips to prevent discomfort with sex. Please share tps and words of wisdom with her here!

IC patient feels like a failure. Let’s tell her that’s not true

A brand new ICN member has made her first post today and it’s abit heartbreaking. She says that she feels like a failure because she’s struggling to find a medication she can tolerate and to get some relief for a tight pelvic floor. She could really use some kind words right now from others who are doing better! Help her out here!

5. Are you active duty or a veteran with IC?

 

IC/BPS is found in many of our service members, veterans, and their beneficiaries. A deployment health report with a surveillance period from 2000 to 2009 identified IC/BPS annual incidence rates for the active duty populations of 80.4 and 4.3 per 100,000 patient-years among females and males respectively. This data is, I believe, a low estimate given the now common perception that men with chronic prostatitis are likely misdiagnosed IC patients instead. Interestingly, the incidence of IC in military personnel has been increasing over time though we do not understand why. A second study showed IC/BPS to be a common primary diagnoses of Veterans Health Administration users, listed at a rate of 1.4% of the total population. (Sohn et al., 2006).

If you need assistance, please email (jill@ic-network.com) or call us directly at: 1-800-928-7496!

6. Newly Diagnosed Coaching

Designed for newly diagnosed patients, the ICN offers personal coaching for patients struggling with interstitial cystitis, chronic pelvic pain and its related conditions. You’ll receive the best books on IC, as well as the opportunity to speak, in depth, with to most experienced IC coach in the country, ICN President Jill Osborne. She’ll offer insight on current diagnostic methods and the six step treatment protocol provided by the AUA. She’ll help you prepare for your physician appointments and track your treatments. She’ll also help you learn how to prevent and/or manage IC flares.

This coaching package includes:

  • Book – The Proactive Patient (or) Heal Pelvic Pain (TBD during 1st coaching)
  • ICN Guide to Managing IC Flares
  • ICN Guide to the IC Diet