Despite intense fires and a ten day evacuation, we were able to release our Summer 2020 IC Optimist. Members can download their copy immediately from their member page over in the ICN Shop. We hope to mail the print versions later this week but this could be delayed by fires/evacuations.
In this issue:
(1) Editorial: Let’s Speak Our Truth – Our theme for IC Awareness Month is “Your Voice Matters” and that has never been more important than today. We are asking patients to speak out to protect Social Security benefits, health insurance coverage for pre-existing conditions, registering to vote and the experience of Black IC patients. We have much work to do.
(2) Inside AUA 2020: Highlights From the Course on IC/BPS – We highlight a fascinating new course on IC/BPS from the AUA 2020 Annual Meeting taught by three leaders of the international IC research community. You’ll be amazed at how our understanding has changed, how Hunner’s lesions represent a distinct disease, the diminished role of finding glomerulations on the bladder wall and much more!
(3) Inside AUA 2020: Impact of the Microbiome on Urinary Disease – Dr. Curtis Nickel, a renowned IC researcher in Canada, gave a breakthrough lecture at AUA on the importance of the microbiome in the urinary tract. Our urine is not sterile and, in fact, they have found thousands of bacteria in our urinary tract. He explains not only how important these beneficial bacteria are but how they differ between men and women, between diseases, locations and so forth. Most importantly, he predicts that Next Generation DNA Urine Testing will quickly replace typical urine cultures because of their increased accuracy!
(4) FDA Issues New Warning Label for Elmiron® – As we expected, the US FDA has issued an expansive new warning on the risk for eye disease in patients using Elmiron®. Their goal is to warn both patients and providers that this is a serious issue that must be monitored closely.
(5) Transitioning From Elmiron? – We have been inundated with calls from patients looking for information on what they can use to replace Elmiron®. The options are limited but there are several worth exploring. Most importantly, for those patients using Elmiron® who were not improving, this is an opportunity to revisit your diagnosis to make sure that there isn’t another condition which could be triggering your bladder symptoms. There may be more effective therapies available!
(6) Related Conditions: Fibromyalgia – One of the most common related conditions in patients without Hunner’s lesions is fibromyalgia, an unusual body wide pain condition that may be the result of central sensitization. Stacey Shannon goes over symptoms, diagnosis and therapies!
(7) The Latest Research: Could Birth Control Pills Cause IC? Possibly – We share a new case study of an 18 year old patient who suddenly developed bladder symptoms that progressed rapidly over a year. While she received several conflicting diagnoses, one care provider suggested that she stop her birth control. She was symptom free two months later.
(8) Inside AUA 2020: The Latest Research – We review 14 new research studies released at the AUA meeting this Summer. From IC subtypes to best therapies, you’ll find many of these encouraging and thought provoking. We were very intrigued with a new study of men with testicular pain that found that 70% had an underlying hip dysfunction that, when treated, resulted in pain relief. This is a very clear reminder that both muscle and joint dysfunctions can trigger pelvic pain and, in these cases, bladder therapies are not effective.
(9) IC Diet Project: IC Friendly Cold Drinks For Hot Days – With skyrocketing temperatures here in California (It was 118 yesterday), we’re all diving into cold drinks with abandon. We share lots of bladder friendly cold drinks that you can enjoy without triggering bladder symptoms.
(10) Self-Help Tip: Kindness Matters – Don’t you just wish that you could hug your friends right now? We’re living in a different, more stressful world right now and sometimes the best way that we can cope is by reaching out to others with kindness and compassion. May you find comfort on your difficult days, smiles when sadness intrudes, rainbows to follow the clouds, sunsets to warm your heart, courage to know yourself, patiences to accept the truth and so much more.
(11) IC Awareness Month 2020 – Every September, the IC community rallies together during IC Awareness Month to educate, empower and support the many patients who have suffered in silence at home alone. This year, we are honoring and empowering the IC patient community. Your story with IC is important. Your voice and your vote matters. This year, we’ve got to speak out to protect our health insurance, our medical care and our futures. Now accepting nominations for MD, Nurse and Physical Therapist for 2020.
(12) 2019 Clinician of the Year Awards – We are delighted to announce the winners of the 2019 IC Awareness Month Clinicians of the Years.
