I am excited to announce that the transcript of my interview with Dr. Robert Echenberg has been posted to this website as its own page!  Please check out the interview as Dr. Echenberg does a great job of explaining chronic pain and how it can be treated through an integrative approach. Dr. Echenberg currently runs the Institute for Women in Pain located in Bethlehem, PA and has a background in OB/GYN.  Please share this interview transcript with anyone you know silently suffering from chronic pelvic pain.  Or perhaps you or a loved one have been looking for a place to seek out warmth and understanding for your chronic pain disease-Dr. Echenberg is both of these and then some!

Thank you WEGO Health online for providing the heads up for an upcoming world wide screening of "LIFE Before Death" followed by a doctor lead panel discussion about the chronic pain health crisis.  The following information is from www.Tufts.edu:

LIFE Before Death The Pain Research, Education and Policy (PREP) program within Tufts Public Health is honored to be one of the global sites selected to host a world premier simulcast of LIFE Before Death on Thursday, February 2, 2012 from 3 - 5:15 PM.

Our screening of this award-winning, multinational documentary on the global crisis in undertreated pain is open to all who are interested - clinicians as well as the general public -- at no cost. The film was made possible through support of several organizations, including the International Association for the Study of Pain (IASP), the Mayday Fund, and the Union for International Cancer Control (UICC). This event is in conjunction with WHO's annual World Cancer Day on Feb 4.

We are pleased that Judy Foreman, a nationally syndicated health journalist and author, will open with an introductory overview. After the screening, a panel of palliative care clinicians and PREP faculty, joined by Ms Foreman, will present their reflections and conduct a conversation with the audience.

DATE: February 2, 2012
TIME: 3 - 5:15 PM
PLACE: Wolff Auditorium, Tufts Medical Center, 800 Washington Street, Boston, MA

80% of all people globally lack adequate access to essential pain medicine. More than 3.3 million people die with untreated moderate or severe pain from cancer and HIV each year.

Please view the "trailer" about this unique documentary. Attached is a flyer for download and display. Please forward this information to colleagues and lists that may have a personal or professional interest in addressing the problem of undertreated pain.

I am excited and honored to announce that I was able to have an interview with Dr. Echenberg last week and I hope to be able to provide everyone with the completed transcript within the next couple of weeks or so.  Dr. Echenberg is the founder and director of the  Institute for Women in Pain in Bethlehem, PA, co-author of "Secret Suffering: How Women's Sexual and Pelvic Pain Affects their Relationships", and has served on numerous medical boards in both the U.S. and internationally.  It is important to note that the work that he and other doctors are doing around the world in the areas of chronic pain, IC and pain management will give you much hope if you are suffering from the severe pain of IC and/or other chronic pain conditions. Please visit the ICPBS Support website soon for more details and to read the full interview!

Let the world know what it is like to live with IC/PBS!  ICPBS support is having an open call for IC patients to submit poetry and/or art to be featured on the IC Support Web page.  ICPBS Support will be creating a separate web page of art and poetry to share with other IC patients around the world.  Poetry submissions must be no longer than six lines long so that I can feature more than one poet/IC patient.  Artwork should be no larger than 702px x 150px and submissions can be either: digital photo, or a copy of your painting, drawing, etc.  I also have an open call for an IC patient to create a banner (either digital photo or artwork to be featured on the Home Page banner.  Same dimensions as above: 702px x 150px). 

All art and poetry submissions must be received by July 5, 2011 to be considered.  Please include the name of your art and how you would like to receive credit for your art on the website.  If you have no preference I will follow the following format.  Example: First name only, IC Patient, country in which you live.

I will be selecting 3-5 poetry submissions, 1-2 art submissions, and 1 IC Support Banner page image/logo to be featured on the website (all given credit to the artist/IC patient). Send questions or submission entries via the 'Contact Me' form under the More tab on this web site.   

I recently received information from Ortho Women's Health & Urology (a Division of Ortho-McNeil-Janssen Pharmaceuticals),  the manufacturers of Elmiron, that a shortage of Elmiron is being anticipated. (Please do not contact me directly regarding the Elmiron shortage-visit the websites listed below or contact OWHU directly via the 800# listed in the last paragraph.) Here is the drug shortage announcement as it was conveyed to me:

On behalf of Ortho Women’s Health & Urology (OWHU), Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., we wanted to inform IC patients about a product shortage of ELMIRON® (pentosan polysulfate sodium) 100 mg capsules. ELMIRON® is an oral prescription medication indicated for relief of bladder pain or discomfort associated with interstitial cystitis, a chronic condition of the bladder that affects both women and men.

 

We anticipate this shortage, due to manufacturing delays, could last several months, thus limiting the supply of product available to patients. We are doing everything possible to resolve this shortage and re-establish supply to patients as quickly as possible.

 

We have contacted the U.S. Food and Drug Administration (FDA), pharmacists, physicians, and patient groups to share this news with them directly. Physicians or patients that have questions about this product shortage can contact the OWHU Customer Communications Center at 1-800-526-7736. Physicians seeking information also can visit www.myorthoelmiron360.com; patients can visit www.orthoelmiron.com.

This month marks the second anniversary of the launch of the ICPBS website and blog.  As I reflect back over the past two years I wonder how best to approach a milestone measured not only in the number of days but in the number of men and women who have crossed my path simply because we share a common thread of living with or being an advocate of a painful bladder disease.  An anniversary such as this precludes the passing of a celebratory cake and the donning of  tin foiled party hats. 

Most anniversaries are marked with a speech and a remembrance of the people and the moments that highlighted the passing of time.  So it is in the spirit of marking the passage of time, but just as importantly, of marking the many people who have left their mark on me because of ICPBS that I would like to honor the past 24 months since I launched a website and blog in the hopes of reaching out to a few people with ICPBS. Instead of a mere handful of people with ICPBS, close to 3700 people have landed on the front page of the website, dozens of IC patients have posted blog comments, I have had the honor of interviewing doctors thick in the battle for improving diagnosing and treating ICPBS, and my heart has been both shattered and strengthened by the courage and tenacity of spirit of men and women living with ICPBS who have reached out to me with their ICPBS stories.  My promise to uphold your privacy will never be breached but I want to publicly thank you for entrusting someone whom you have never met with the story of yourselves and your life living with ICPBS. 

As I look ahead to the next year(s) I am dedicated and even more singularly focused on increasing the reach of this website and blog and spreading awareness, advocacy and treatment options for ICPBS patients worldwide.  Your stories and your courage in the face of a painful chronic disease have forever touched me.  As an ICPBS patient, now in remission, my promise to help others through speaking aloud the painful truth behind living with ICPBS, offering emails of encouragement, and seeking out new treatments and protocols for ICPBS, is still the forefront of my mission.  Within the next year I am pushing myself to do more, to reach further, to work as tirelessly as the doctors I have had the privilege of interviewing, in order to bring even more support to ICBPS patients globally.  Thanks to each of you for two of the most inspiring years of my life. 

I am excited to share with you that earlier this month I had the honor of conducting an interview with a prominent IC doctor who is recognized nationwide for his efforts in diagnosing and treating people with IC.  Please check back later this month for a posting of this interview which will have its own dedicated page here on www.icpbssupport.com so the information will be easy for people to find.  I would also like to take this opportunity to thank my contact Meredith from Ortho Women's Health and Urology™ for setting up this interview. 

As the holidays dwindle down and you've had the opportunity to read the incredible IC doctor interview, then check back in the new year as I will begin cooking (literally and perhaps figuratively) up an interview, blog and perhaps sharing some IC friendly recipes with a well known and loved published author of IC cookbooks, nurse and IC patient and advocate. 

I am humbled and excited for the great people and opportunities that continue to cross my path in the world of IC.  May the rest of your holiday season be filled with hope and happiness and may the new year be filled with joy and wonderful things. 

Blessings,
Carin

The airing of MTV's True Life of IC patient Tali Krull is finally airing next month!  (Remember this show was originally scheduled to air back in August). 

Date: December 6 at 10PM EST with a replay scheduled on December 7 at 1AM EST. If you are like me and do not have cable TV (or do not live in the States), www.mtv.com does post full episodes of all of their "True Life" series episodes online, it just might be a matter of a waiting a month or two until they load them to the website.

Please urge your family and friends to watch this show and hope that this spreads awareness about what living with IC is like for millions of sufferers!  And a big thank you to Tali for your courage to bring cameras and the public into the sad and intimate details of how IC affects your life and your relationships.