The Best IC Moments of 2012
"Pennie's For IC Patients Fund Raiser" Congratulations to IC patient Lisa Herman for organizing a Facebook drive IC research fundraising campaign that, in December 2012, raised over $800 for the Beaumont Hospital IC research program. She proves that with just a little bit of passion and enthusiasm, great things can happen when patients unite together for the cause. Read more
PROFESSIONAL - Julie Beyer RD advocates year round for the needs of IC patients and her articles are insightful, encouraging and filled with practical suggestions. We loved this blog, "Interstitial Cystitis Mental Gymnastics - Part Two - Turning The Negative Into The Positive because it reminds us all that there is power in how we choose to face each day.
PROFESSIONAL - Physical therapists Elizabeth Rummer and Stephanie Prendergast provide a blog that is educational about all things related to the pelvic floor. It's a must read for anyone struggling with pelvic floor dysfunction, muscle pain and/or incontinence. A perfect example is their blog "Why Kegels are bad for a tight pelvic floor"
PATIENT - Released on the last day of IC Awareness Month, Tali Kateri's "It's All About You Kid"s reminds us that we are each capable of making the world listen to our voices, our stories and our need for compassionate care. It's a powerful reminder that we each, as patients, have the opportunity to make a difference in the lives of others who may not know that they have IC and may be suffering in silence. Beautifully written yet with an "in your face" attitude that makes it all the more compelling.
In "The Fight Isn't Over", IC'er Amy Fulk shows us, for a second year in a row, that teens are also affected by IC. She shares her story, her turning point and why she is now studying to become a urologist so that she can provide hope to others!
In "The Good and The Bad," IC'er Kali shares how IC has affected her life in a moving video to IC and a tribute to her family who have kept her going!
In "IC and the ER", IC patient MissGlass shares her experience trying to receive help at emergency rooms and how chronic pain patients are often treated. She was accused of being a drug seeker when all she wanted was a bladder instillation. It's done in a text to movie format that is very unusual and creative.
IC patient Mia Elliot continues her passion for food by writing her third cookbook. IC Friendly Fit & Fresh is perfect for patients who are weight conscious featuring 75 new recipes that are under 500 calories each. We say "Well Done!" Read more!
FOR WOMEN - Yet another study has demonstrated that myofascial physical therapy can be beneficial for women struggling with IC and pelvic floor tenderness. An NIDDK funded clinical trial followed 81 women from eleven clinical centers around the USA who received either pelvic floor myofascial physical therapy or global therapeutic massage. 59% of those receiving myofascial therapy (p = 0.0012) and 26% of those who had the therapeutic massage group had decrease in pain, urgency and frequency. Most IC clinics now provide pelvic floor assessments and referrals to therapists who can provide this vital treatment. Read more
FOR MEN - The RICE (RAND Interstitial Cystitis Epidemiology) study released the results of a study which determined that as many as four million men in the USA may have symptoms of IC, double the size of men diagnosed with chronic prostatitis. Read more
The most promising and exciting study in years was released last Spring at the AUA 2012 annual meeting. IC researcher J. Curtis Nickel and colleagues in Canada released the results of a Phase 1B ascending dose cohort study of 18 women with IC who received either 200 mg. or 650 mg. lidocaine via the LiRIS® drug delivery system. Six out of the seven women with Hunner's Ulcers participating in the study showed a "resolution of Hunner's lesions." This is the first therapy, in our memory, of any therapy showing a healing of ulcers, made all the more astounding by the short two week treatment period. A much larger clinical trial currently underway in the USA and Canada to verify these results.
Smoking, Children & the Bladder - If you have a smoker in your home, this study should alarm you! In a presentation at the AUA 2012 meeting, physicians showed that second-hand cigarette smoke was associated with moderate to severe irritative bladder symptoms in children. “Our research shows that exposure to second-hand cigarette smoke increases the risk of severe urinary disorders in children, that may otherwise be reduced or even prevented,” said Joseph G. Barone, MD, an expert pediatric urologist. Read more
Please Sign The Restroom Access Petition
Patients with IC, IBS and Crohn's Disease are currently petitioning to ask the Obama administration to support new laws that would allow restroom access in businesses normally reserved for employees. They need 20,000 signatures in the next two weeks! Please join the effort and sign the petition if not for the fact that it will raise awareness. Please share on your favorite social networking sites as well!
Recent IC Blogs & Videos
- VIDEO - Treating Chronic Pelvic Pain
- BLOG - Men.. Why You Should Consider an Annual Dr. Visit - A Patient Story - Dr. Geo
- BLOG - Are you Sick and Tired of Being Sick and Tired: How to Get More Energy Without Caffeine
- BLOG - All the Pieces of IC - by Carin Willis
- BLOG - Sweet Potato Hash - by CookingForInterstitialCystitis.com - Helena DeJong
- BLOG - How Do You Lose Yourself - by MommyHurts.com - Melanie
The Latest Research
If you have any doubt about the future of the IC movement, look no further than at the new, dynamic research that is produced each month on new therapies, diagnostic methods and, of course, the potential causes of IC. We've chosen to highlight studies and papers that we think are particularly interesting.
- Randomized multicenter feasibility trial of myofascial physical therapy for the treatment of urological chronic pelvic pain syndromes
- Evidence for overlap between urological and non urological unexplained clinical conditions
- Hydrodistention plus bladder training versus hydrodistention for the treatment of interstitial cystitis.
- The number of existing functional somatic syndromes (FSSs) is an important risk factor for new, different FSSs
- Effects of interstitial cystitis on the acoustic startle reflex in cats.
- Available Evidence About Efficacy of Different Restoring Agents of Glycosaminoglycans for Intravesical Use in Interstitial Cystitis.
- Persistent Therapeutic Effect of Repeated Injections of Onabotulinum Toxin A in Refractory Bladder Pain Syndrome/Interstitial Cystitis.
- Melatonin Improves Bladder Symptoms and May Ameliorate Bladder Damage via Increasing HO-1 in Rats.
- Pain in interstitial cystitis/bladder pain syndrome: do characteristics differ in ulcerative and non-ulcerative subtypes?
- Temporal Ordering of Interstitial Cystitis/Bladder Pain Syndrome and Non-bladder Conditions.
ICN Hot Topics - What's the BEST advice you've ever been given for your IC?
One of the most passionate discussions in the ICN forum is "What's the worst advice you've ever been given for your IC?" The shared stories have been a stunning "inside look" at the treatment that IC patients have experienced from medical care providers, family members and friends. Read that discussion here!
Now we'd like to assemble a list of the BEST suggestions and advice that patients have been given over the years that will help newly diagnosed patients! From self-help strategies to managing pain, selecting a doctor to making intimacy more comfortable, we'd love to hear your best suggestions!
Upcoming Patient Conferences:
A Weekend Retreat for Female Chronic Pelvic Pain - April 27-28, 2013
Join some of the top chronic pelvic pain specialists in the country for a special 2-day educational retreat dedicated to female chronic pelvic pain. This weekend will provide a solid foundation of knowledge, skills, and treatment modalities that will help you get back on track towards managing and healing your chronic pelvic pain. The conference is for female chronic pelvic pain patients with complex symptoms involving one or more of the following: Interstitial Cystitis (IC), Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Vulvodynia, Vestibulitis, Lichen Sclerosis, Pudendal Neuralgia, Endometriosis, and other pelvic and genital pain disorders. Supportive partners and significant others are invited and encouraged to join us on this weekend of learning and transformation! There will be special workshops just for you!
Self-Help Tip of the Month - Game Found to Reduce Pain in Burn Victims
(By Jill Osborne MA, ICN President & Founder)
When NBC's Rock Center did a story on a soldier who was finding relief for his pain using a virtual reality video game, it caught my attention. As you probably know, burns can be agonizingly painful especially daily treatments to remove damaged skin. It's something that must be done that both the patients and the doctors dread. Some researchers, however, decided to try something new. They created a 3D alternate reality game that patients could play during appointments. Because burns are so "hot", this game focused on "cool" and had the patients throw snowballs at penguins in a winter landscape.
The results were simply marvelous. Patients reported dramatically less pain and, in a surprising result, the brain scans of these patients also showed dramatically less brain activity that is associated with pain. It appears that the brain is actually sensing less pain when these games are played. This technique is now being used in burn units throughout the world and, in particular, with soldiers returning with serious injuries. Read the full article
I was intrigued because I'm a gamer. A perfect Saturday afternoon for me is playing games, such as RAILS, Monopoly, Apples to Apples, Spades and more! Laughter can be so healing. But, I was never a video gamer until my brother gave me a disk for the popular game "World of Warcraft" while I was dealing with some very scary heart problems. It was immediately helpful! I was able to immerse myself in a gorgeous world where I could explore beautiful landscapes, meet fun people and play an "elf."
You might be surprised to learn that a large number of players are actually men and women in their 30's, 40, 50's and older. It's very popular with members of the military. I also play with police officers, doctors, nurses, professors, college students and, yes, a surprising number of mothers and grandmothers. Many are married and you'll often find families playing together. In fact, just a few weeks ago, I joined a party that included a mother, father, 14 year old daughter and a 9 year old son.
Yet, over the years, what has touched me the most are the number of players who participate from their home despite serious illness and disabilities. Several of my military friends are recovering from head injuries, blast injuries, back injuries and PTSD. I've played with patients struggling with cancer and, in one case, a teenager severely injured in a fire. One mother had her ten year old playing WOW, supervised of course, to help improve the function of his fingers after they were badly burned.
Just as the burn victims found their video game, my friends have found WOW incredibly helpful. I can't exactly say why... but what I do know is that when I do play, my physical discomforts fall away and I can find my smile again. I also love the social aspect. I've made some fantastic friends.
So, if you are struggling with pain and find yourself feeling lonely and uncomfortable, you might find games like World of Warcraft or Rift fun and even helpful! If you don't believe that games can really help reduce pain, watch this video! Research has PROVEN that burn victims feel less pain when playing their game and I believe that gaming may provide a similar effect for IC'ers. No prescription required. Think about it.
- Jill, Level 90 Blood Elf Hunter, Surv spec, PVE Preferred, Cross Realm Raid Invites Welcome! Send me an e-mail if you want to play! (firstname.lastname@example.org)
Recipe of the Month - Crockpot Chicken Stew
Did you know that IC patients have shared hundreds of recipes in the ICN IC Chef Cookbook and our support forum! Here's a recipe submitted by our Diet Moderator Carole, perfect to warm your tummies during these cold winter months! Find recipes and share your own here!
2 pounds boneless, skinless chicken breasts, cut in 1-inch cubes
2 large sweet onions chopped (if you can tolerate)
1 cup baby carrots, or 2 large carrots cut into 1-inch slices
3 medium potatoes, cut into 1-inch cubes
3 1/2 cups organic chicken broth
1 teaspoon celery seed (if you can tolerate)
1 teaspoon dried thyme
1/2 teaspoon black pepper (if you can tolerate)
8 ounces sliced fresh mushrooms
1 cup frozen corn, thawed
1 cup frozen peas, thawed
Combine all ingredients, except peas, in the slow cooker/Crock Pot; stir well. Cover and cook on low 6 to 8 hours, until chicken is done and vegetables are tender; stir in peas the last 30 minutes.
Serves 6 to 8.
We're kicking off 2013 with a sale of CystoProtek® . CystoProtek® contains glucosamine, quercetin and rutin as well as chondroitin sulfate and sodium hyaluronate. Unique to Algonot's formulations is olive kernel oil, which is instrumental in helping the body absorb and deliver the dry ingredients found in each soft gel capsule. CystoProtek® is free from artificial colors or flavors, corn, milk products, preservatives, salt, starch, sugar, wheat or yeast..*
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We're Looking For MD & PT Recommendations in Canada & USA
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One of the great frustrations of having interstitial cystitis, prostatitis, vulvodynia, prostatodynia, pudendal nerve entrapment, pelvic floor disorders and even hemorrhoids is that sitting can be excruciatingly uncomfortable. And, if you're like me, you've tried the dreaded doughnut cushions with devastating results. Round, doughnut shaped cushions are frequently recommended yet, due to their shape, but unusual pressure on the area that can make our symptoms much worse.
The two cushions below represent the best that I’ve found and I use both here in my office. The ICN Bladder and Prostate Friendly Chair Cushion works great when you're struggling with prostate, urethral, rectal or vulvar discomfort because it reduces pressure directly on the sensitive crotch area. I use the Waffle cushion when I'm struggling with muscle tenderness from sitting for long periods of time at my desk. Both work well in cars, planes, at work, home and even the bleachers at football games. I sincerely hope that these will help you find comfort too. - Jill, ICN Founder
Bladder & Prostate Friendly Chair Cushions
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IC FRIENDLY BREAKFAST IDEAS:
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Find these items and 400 more items in the ICN Mail Order Center Today - http://www.icnsales.com