ICN E-Newsletter - Late February / Early March 2017
Trouble reading this issue? Read it on the web here!
Winter 2017 IC Optimist Released
In this issue:
1. Editorial - Healthcare Activism - Speak Out Now About YOUR Needs
2. IC, TMD & COPC’s: How a dental condition changed the future of IC and chronic pain research.
3. Pelvic Floor Physical Therapy Treatment for IC/BPS
4. Why a “Diagnosis Isn’t The Key to Recovery
5. Feature Story – Proactive Patients Have Better Outcomes
6. Chemotherapy and IC: Hunner’s Lesions Present Special Challenges
7. The IC Solution – Best Book In 20 Years
8. The Latest Research
9. Canadian IC Guidelines Adopted
10. Self-Help Tip: Cold & Flu Strategies For IC/BPS
11. IC Diet Project: Slow Cooker Meals For Sensitive Tummies and Bladders
News & Feature Stories
Q&A With Dr. Eliot Lander on Stem Cell Therapy and Liposomal Pentosan
Dr. Eliot Lander has been testing, for years, the use of a patients own stem cells in the treatment of interstitial cystitis. He's also the first to use liposomes to deliver pentosan polysulfate (Elmiron) deeply into the bladder wall. His work shows great promise. Read it now!
Chemotherapy and Interstitial Cystitis - Tips To Protect For Bladder
Can you imagine struggling with interstitial cystitis only to discover that you're also struggling with breast cancer? IC patient Joy faced very serious challenges with her chemotherapy because her Hunner's lesions had not been treated at all. Read it now!
Eight Potential Causes of Bladder Injury
IC Subtype Two, Bladder Wall Injury, is characterized by pain as the bladder fills with urine that is relieved by urination. We share eight ways that the bladder wall can be injured. Read it now!
Best Research, Blog, Video and Book of 2016
From the finding that IC patients in flares often have candida in their urine, to the discovery that our gut biome is deficient in important bacteria, here are some of our favorite stories from 2016. Read it now!
The Latest Research
Is IC an Autoimmune Disease?
Behind the redness, swelling, heat and pain of any infection or injury, a biological war is occurring. Injured cells release chemicals that alert our immune system that something is wrong. One of these chemicals, chemokines, attract and direct white blood cells (i.e. macrophages, lymphocytes) to the injured area where they swarm and kill invading bacteria or microbes, ingest debris, eliminate foreign matter and trigger the repair of tissue. This acute inflammation response also causes an increase in blood flow (vasodilation), swelling, pain and heat that usually lasts only a few hours or days.
Inflammation is essential to healing. Without it, even the smallest of infections could become life threat- ening but when uncontrolled, inflammation plays a role in almost every major disease, including cancer, heart disease, diabetes, Alzheimers and depression. A poor diet, smoking, alcoholism and obesity are well known to promote chronic inflammation.
In 2016, several studies sought to determine what role, if any, inflammation plays in IC, especially Hunner’s lesions. They produced yet more compelling evidence that Hunner’s lesions are a separate, distinct disorder of the bladder.
Three Treatments For Hunner’s Lesion Show Promise
As more and more researchers and clinicians argue that Hunner's lesions should be considered a seperate disease due, in great part, to the presence of inflammation in tissue biopsies, thousands of patients can attest that finding an effective treatment is challenging. We share three treatments that have shown success in treating what is considered the worst form of IC.
Current Clinical Trials
LiNKA Study For Hunner's Lesions - Patient Recruitment To End Later This Fall
Do you or someone you know suffer from IC with Hunner's Lesions? If so, you are familiar with the pain that can make it difficult to enjoy life. Allergan, Inc. (http://www.allergan.com/home) is enrolling participants for a research study investigating a drug device to evaluate the safety and effectiveness of a continuous release of lidocaine inserted into the bladder compared with placebo for treating the symptoms of IC with Hunner's Lesions in female patients. All patients will have the opportunity to receive the active study drug if they request and satisfy the criteria. Read More!
My Fibroid Study
If you experience heavy periods related to uterine fibroids, you may be eligible to participate in a clinical research study. Qualified participants will receive study-related care and investigational medication at no cost. Read more!
MAPP Research Network Study Seeks People with IC/BPS or CP/CPPS –
Do you or someone you know suffer from Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) or Chronic Prostatitis/Chronic Pelvic Pain Syndrome (CPPS)? Northwestern University's Feinberg School of Medicine is looking for men and women who have IC/BPS and men who have CPPS to participate in a research study. Read more!
Self-Help Tip - Cold & Flu Strategies For IC/BPS
Flu season is in full force and particularly severe in North America leaving interstitial cystitis, bladder pain and prostatitis patients to wonder just what can they use to control and reduce their symptoms without aggravating their IC and bladder symptoms. Remember that influenza is VIRAL, thus antibiotics will not help. An estimated 50,000,000 million antibiotic prescriptions are written each year that have no effect at treating viral infections and, in fact, are contributing to a dramatic rise in dangerous, resistant infections.
Here are some of the ideas, products and suggestions that IC patients have shared with us throughout the years in their quest to treat a very stuffy nose, sore throat or cough without irritating their bladders.
The IC Diet - Simply Delicious: Low Acid Eating Made Simple
IC Diet Project - Set It & Forget It - Slow Cooker Meals For Sensitive Tummies
The concept is simple. Throw meat and some vegetables into a slow cooker, add some seasoning, and let it simmer all day. After a few hours you and your family have a complete, home-cooked meal, with minimal effort and maximum flavor. What could be better than that? Read more!
24/7 ICN Patient Support Forum
If you've never met anyone else with IC? If you're feeling alone in your struggle with IC? If you're struggling to figure out why you're flaring? You are not alone! We're here and we can help! The IC Network Support Forum provides hope, comfort and encouragement to patients around the world! We welcome you with open arms. In our forum, you can ask questions, help other patients and, most of all, make friends.
- Share Your Patient Story
- How IC Is Diagnosed
- Treatment Options
- The IC Diet
- Self-Help For IC
- Managing IC Flares
- Health Insurance & Disability Benefits
- Related Conditions to IC
- Social Life
- Meet Others by Location
- Spirituality, Faith & Positivity
Current Forum Stats
Discussion Threads: 80.095 - Posts: 634,330 - Active Members: 43,968
What's New In the ICN Shop! - www.icnsales.com - 800.928.7496
New Product For Vulvar Discomfort! - Medicine Mama's V Magic
If you struggle with dryness on the vulva and are unable to use a traditional estrogen product, we've found a wonderful new option. Medicine Mama's V Magic is a multipurpose all-natural vulva and intimate scream that soothes, protects and calms sensitive and tender skin. It provides immediate relief for dryness, redness, itching, burning and general discomfort caused by menopause, hormone changes, pregnancy, chemical irritants, intimate activity and other environmental factors.
Certified organic, it contains organic EVOO, Avocado oil, Sea Buckthorn oil, Cera Alba Beeswax, Honey and Propolis. Dermatologist tested and approved with zero irritants. Free of synthetic dyes, fragrances, chemicals, preservatives, parabens, sulfates, soy, fillers, binders and petroleum. Cruelty Free.
Desert Harvest RELEVEUM For Vulva & Perineal & Shingles Pain
If you struggle with vulvodynia and/or perineal pain, Desert Harvest Reléveum is worth checking out. It's a 96% natural skin care cream that contains 4% Lidocaine cream and certified organic Aloe Vera gel to help with the irritation, itching and burning associated with vulvodynia, and other perineum irritations. Contains no irritating parabens or chemical additives and contains a unique variety of natural botanicals like Calendula and chamomile to enhance the soothing and healing properties of the Reléveum compound.
The GingerBee microwaveable pelvic heating pad offers penetrating heat to relieve bladder pain, pelvic pain, muscle tension and stress. This is a must have for everyone. With a triangular shape, it fits comfortably over the pelvis yet isn't too heavy to be uncomfortable. Learn more!
OTC Neutraceuticals (Step One Interventions)
Mama Strut Reusable Hot & Cold Packs
We love finding new products that can help patients who suffer with pelvic pain. We found these earlier this spring and fell in love! Mama Strut reusable hot and cold packs are perfect for patients who need to comfort their "nether" region. Shaped like a menstrual pad, they fit comfortably in the crotch area and may help soothe rectal pain, vulvar pain and pelvic floor muscle tenderness. They can be frozen for cold or heated in the microwave and contain instructions on the back of the pad.
IMPORTANT - DO NOT place frozen or hot pack directly on your skin. This, like all other hot or cold products, should be wrapped with a small towel first to protect the especially tender skin in your crotch area.
Each package contains two pads. Dimensions: 7" long by 2.5" wide