By Jill H. Osborne MA
From Dr. Drew’s astonishing rant about IC and endometriosis last Spring to a patient fundraising project which raised over $4000 for IC research this Fall, we share the highlights and “best of” moments in 2014! Do you agree?
Most Promising Treatment of 2014 – LiRIS
I continue to believe that LiRIS is the biggest treatment breakthrough we’ve seen in the IC community in two decades. LiRIS is a medical device that administers small doses of lidocaine to the bladder for a two week period and is the only treatment which has successfully HEALED the worst form of IC, Hunner’s lesions, in some patients. Allergan acquired the rights to LiRIS from Taris BioMedical In the Fall 2014 and we hope that they will continue this vital line of research.
Most Innovative IC Therapy – Botox Without Shots!
A new team of researchers have been testing a new botox bladder instillation using liposomes to carry the medicine deep into the bladder wall. If this continues to be effective, it could reduce the cost of Botox therapy, the need the general anesthesia and the risk of adverse events. Better yet, a patient won’t have to endure a dozen or more shots into their bladder wall. https://www.ic-network.com/new-ic-treatments-use-liposomes-to-deliver-botoxa-into-the-bladder/
Best Patient Rant of 2014 – Tali Keteri on Dr. Drew
Tali Keteri on Dr. Drew’s arrogance and insensitivity towards patients with IC and endometriosis when he suggested that these were “grab bag” diagnoses on his radio show. He apologized to the endometriosis community but not to the IC community. Tali’s writing style is fierce, proud and represents the twenty somethings in the IC community! http://icramblings.com/tag/tali-keteri/
Best IC Blog of 2014 – Julie Beyer RD
Best known for her work with the IC diet, Julie Beyer RD has an awesome blog that covers far more than just food. This is a must read for any IC patient trying to learn the ropes. As an IC patient, Julie knows the issues that patients struggle with and handles them beautifully! Every column has useful tips and suggestions that can truly help! Julie is the author of Confident Choices: Customizing the IC Diet & Confident Choices: A Cookbook for IC and OAB! http://interstitial-cystitis-diet.blogspot.com
Best Pelvic Pain Blog of 2014 – PelvicPainRehab.com
We love the Pelvic Health & Rehabilitation Centers blog series. It’s incredibly helpful to men and women with pelvic pain, but also touches on other important topics real life topics. They are bold too. Consider the blog “How your Vagina is Supposed To Smell.” very woman has experienced those moments when something didn’t seem quite right “down there”. Stephanie and Elizabeth boldly talk about it. That’s the candor this community needs! http://www.pelvicpainrehab.com
Best IC Patient Creative Project of 2014 – Tali Keteri’s Best Meme’s Contest
Tali Keteri for running the Best IC Meme’s contest during IC Awareness Month. The results were hysterically funny and offered a new way to educate others about IC! http://icramblings.com/tag/tali-keteri/
Best IC Patient Fundraising Project of 2014 – Pennies for IC
IC patient Lisa Herman created and administered the Pennies for IC Patient Facebook fundraiser which raised more than $4,400 for IC research! Bravo!!!! She shows that every single patient can make a difference!! Well done Lisa!
Best IC Book of 2014 – The Proactive Patient
Written by Gaye & Andrew Sandler, The Proactive Patient: Managing IC and Related Conditions is the most comprehensive book released to the IC community in a decade. It covers not only IC but also the common related conditions. But it also talks about hormones, menopause, fitness and much much more! Definitely worth purchasing! https://www.ic-network.com/great-new-ic-book-released-proactive-patient-managing-icbps-related-conditions-gaye-andrew-sandler/
Best ICN Editorial of 2014 – Bladder Rape by Silver Nitrate
Imagine going to a urologist for the very first time. The nurse asks you to give a urine sample via a catheter and, before you know it, she puts a caustic solution in your bladder without your knowledge or advance approval. No warning. You scream, you cry and you beg for the nurse to empty your bladder. She refuses for five minutes. That’s exactly what happened to an IC patient this year in the USA. Rape is a strong word and to use it in this context is controversial but, in our opinion, this was an act of unconscionable violence to a patient. https://www.ic-network.com/bladder-rape-silver-nitrate/
Most important IC Patient Survey of 2014
Dr. Dean Tripp is studying the impact of IC on our daily lives that could generate data that will justify more comprehensive treatment for IC patients. If you haven’t taken this survey yet, please do so today! – https://www.ic-network.com/new-important-ic-research-survey-needs-your-participation/
Best Clinic News of 2014
- Dr. Christopher Payne (formerly at Stanford) and his wife, Dr. Jeannette Potts (Cleveland Clinic), opened Vista Urology in San Jose, California. http://www.vistaurology.com
- Dr. Susan Kellogg-Spadt and nurse practitioner extraordinaire Jennifer Fariello opened the Center For Pelvic Medicine at Bryn Mawr Urology. http://centerforpelvicmedicine.com.
- Dr. Robert Echenberg (Echenberg Institute for Pelvic & Sexual Pain) announced that he was expanding his pelvic pain practice to New York City. http://www.instituteforwomeninpain.com
- Pelvic Health & Rehab expands to LA and in Spring 2015, Boston. This fabulous team of physical therapists has helped countless men and women struggling with pelvic floor dysfunction and pelvic pain. We’re thrilled to see them bringing their incredible knowledge and skill to new patient communities. http://www.pelvicpainrehab.com
Best Infographics of 2014
- Thirty IC Awareness Month Daily Facts – This year, we created a new infographic for every day of IC Awareness Month that was shared thousands of times. http://www.icawareness.org
- Got Green Urine? What The Color of Your Urine Says About You – A picture speaks a thousand words, right? Well, when it comes to the color of your urine, a picture can reveal a lot about your health, particularly if you’re dehydrated or drinking too much water! Check out this incredible infographic produced by the Cleveland Clinic. https://www.ic-network.com/what-the-color-of-your-urine-says-about-you/
Best About Face of 2014
Where do many men go who struggle with pelvic pain? Thousands of men receive compassionate care around the USA from gynecologists who, of all the medical specialties, are the best trained and most skilled in the treatment of pelvic pain disorders. Yet, in early 2014, the American Board of Ob-Gyn asked their members to stop treating men with the serious threat that they would lose their certification. ABOG underestimated the backlash when doctors filed suit against them and quickly reversed their ruling. Gynecologists can now treat men without worry of censure. https://www.ic-network.com/abog-reverses-decision-gyns-can-treat-men/
Most important IC Patient Survey of 2014
Dr. Dean Tripp is studying the impact of IC on our daily lives that could generate data that will justify more comprehensive treatment for IC patients. If you haven’t taken this survey yet, please do so today! – https://www.ic-network.com/new-important-ic-research-survey-needs-your-participation/
