- IN THIS ISSUE (January 2012): (View on the web)
- Our Best Picks of 2011 - best video, blog, most promising innovation & more!
- Videos Worth Watching - Actress Elizabeth Oas, Isa Herrera PT, Botox Injections
- IC In The News - Pain Pathways, Teacher restricts restroom access to 5th graders
- Consumer Alerts - Endo Pharmaceuticals
- The Latest IC/BPS Research - Is it time to look beyond the bladder?
- Current Clinical Trials - LiRIS®
- New Articles, Blogs & Podcasts
- Jill's Journal - My 2012 Facts About Sex and IC
- IC Awareness - A Contest For New Articles on IC
- Trouble Accessing Our Web Site? - We had to block some servers
- We're Looking For - MD/PT recommendations, bladder photos
- IC Support Opportunities
- What's New in the ICN Shop - Dollies Delectibles Carob Candies are back in stock!
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Our "Best Picks" of 2011
(By Jill Osborne, ICN President) It's always a joy to say goodbye to an old, difficult year when the promise of a new year is beckoning. Before we let 2011 go entirely, I think it's worth reviewing some of its BEST (and one tragically sad) moments.
BEST CLINICAL NEWS
The release of the new Diagnostic and Treatment Guidelines for IC by the American Urology Association last Spring offers a consensus based five step treatment strategy that physicians can use to create a reliable treatment plan, incorporating both self-help and treatments. But what makes this document unique is its list of "Do NOT Do's." This committee strongly discouraged the use of high pressure, long duration hydrodistentions in favor of lower pressure, short duration procedures. Why? Because it reduces post procedure trauma and the risk of bladder rupture. If your physician is unsure of how to treat IC, please print out our summary and share it with all of your medical care providers.
BEST PHARMACEUTICAL NEWS
A company in India is attempting to bring a generic pentosan polysulfate to the USA market which could dramatically reduce the monthly costs for patients who have had success using Elmiron yet can't afford its often high cost. FDA approvals are currently in process.
A SAD GOODBYE TO ONE OF THE BEST PHYSICIANS
The death of Daniel Brookoff MD, the nations most passionate advocate for patients struggling with IC pain, was a tragedy felt by thousands of his past patients, family and many friends. Dan Brookoff was kind, caring and determined to help those patients who were suffering in silence. When business managers at his former pain clinic in Memphis demanded that he spend less time with patients, he spoke passionately about the needs of these patients to receive one on one care. May we honor his memory by holding out our hands in friendship and support to anyone struggling with pain.
BEST PATIENT VIDEO OF 2011
The BEST patient video of 2011 is "How IC Changed My Life" by Amy Fulk. There's no better proof than this video of just how much IC can change a life. Amy was a star athlete and model who had just received for a full ride athletic scholarship for volleyball when IC struck. She shares her life before and after diagnosis, including her positive experience with Interstim and her return to college with the goal of becoming a urologist We are so proud of her willingness to share her story! Well done Amy!.
BEST PATIENT BLOG of 2011
Tali Kateri tells it like it is. In her blog "Easy dismissal = Pure ignorance & Thoughtless Notions" she takes on those critics who don't believe that IC and other invisible conditions exist. A contribution to our IC Awareness Month campaign, Tali's words raised eyebrows, generated some controversy, perhaps offended a few readers and revealed the heartbreaking struggle of life with IC. She's young, outspoken and dares to tell her story with passion! If you like an essay with attitude, this might strike a chord for you! Read it now!
BEST ACTIVISM EFFORT
IC Awareness Month (Sept. 2011) offered a variety of resources that patients, providers and support group leaders used to spread the word that IC is real and treatable. What we liked most about this campaign were the dozens of patient projects launched using social media, including new blogs that shared their personal stories, donation campaigns, tee shirt designs and more.
BEST BOOKS OF 2011
Two new books were released in 2011 which we think are fabulous resources for IC patients. In The Better Bladder Book, author Wendy Cohen RN offers a credible, reliable discussion of alternative therapies for the bladder. What makes her book unique, however, is the discussion of gluten intolerance and it's potential role in triggering pelvic pain and discomfort. IC patient Mia Elliot released her second cookbook, The Happy Bladder Christmas Cookbook, sharing many new dessert recipes that are adapted for the IC diet.
BEST CLINICAL PROGRAM
The Women's Urology Center at Beaumont Hospital (Royal Oak, MI) offered a five day retreat for women struggling with pelvic pain disorders, including IC. Patients received cutting edge diagnostic and treatment evaluations along with nutritional guidance, physical therapy and personal support. This model is worth replicating around the world and we hope that other clinicians will consider it, as well as adapting it to include men and teens with IC.
MOST PROMISING INNOVATION
At the end of 2011, Taris Pharmaceuticals announced the beginning of the LiRIS® clinical trial in the USA. Developed at MIT, this new device has the potential of revolutionizing the way that medications are delivered to the bladder and, in so doing, the treatment of interstitial cystitis. Resembling a limp piece of spaghetti, a soft, hollow silicon tube filled with lidocaine is placed into the bladder where it delivers medication to the bladder wall for two weeks. Research centers in the USA and Canada will be offering patients an opportunity to participate in the most compelling clinical trial that we've seen in 20 years. Learn more at: http://clinicaltrials.gov/ct2/show/N...m=liris&rank=1
Videos Worth Watching
Actress Elizabeth Oas Shares Her Experience at Beaumont Hospital Women's Urology Center
Diagnosed with both IC and endometriosis, actress Elizabeth Oas was still not finding relief for her symptoms. Doing research online, she found Dr. Kenneth Peters at the Women's Urology Center, Beaumont Hospital (Royal Oak, MI). Acknowledged as one of the leaders in the IC research movement as well as known for his compassionate bed side manor, Dr. Peters revealed her correct diagnosis, pelvic floor dysfunction. Elizabeth share a little bit about her journey.
Isa Herrera, author of Ending Female Pain
Isa Herrera, MSPT, CSCS discusses physical therapy and low lever laser therapy as it relates to helping women who suffer from painful sex, post-partum pelvic pain, vulvoldynia, interstitial cystitis, dyspaurenia. She highlights the use of low level laser therapy for reducing inflammation, releasing trigger points and how this modality combines with her unique Renew Program For Women helps reduces pain for pelvic floor conditions. Her center is Renew Physical Therapy in New York,. She is the author of Ending female Pain.
Botox Injections Into The Bladder
A fabulous show in England, Embarassing Bodies, covers a wide range of illnesses that most television shows would never cover. We've been a fan for years now. Here's a fabulous video of a young girl struggling with incontinence who undergoes botox injections. The video of the actual procedure, including the injection of the medication into the bladder wall, is absolutely fascinating! Definitely worth a watch. This proves that regardless of your age, bladder issues can happen and that it's important to be receptive to possible new treatments. We thank Indre for being brave enough to tell her story on TV!
IC In The News
Overcoming Being Overlooked: The Pain of Interstitial Cystitis
We would like to send out a big THANK YOU to author Cindy Hodnett and the editors of Pain Pathways magazine for doing a "Reflections: Inspiring Pathways" feature story in their Winter 2012 issue. The article is titled "Overcoming Being Overlooked: The Pain of Interstitial Cystitis."
Pain Pathways first became interested in IC when they received our press release for IC Awareness Month last July. Not only did they feature a poster for our IC Awareness Month campaign in their fall issue, they also asked if we would like to be featured in the magazine. Of course, we jumped at the opportunity to tell our story.
It sure is great to see IC and the ICN get such great exposure! Thank you! Thank you! Thank you!
Interstitial Cystitis: Recognizing and Caring For A Wounded Bladder
Author Julie Beyer MA RD has written a comprehensive article on IC that was recently published in Ostomy Wound Management. Covering diagnosis, treatment and self-care, this full article is now available on the web for your review! Read the article here!
New York School District's Tragic Bathroom Policy
A teacher in New York has implemented a very controversial bathroom policy, rewarding students who don't use the restroom during the week. Met with disdain by parents of children with bladder and kidney problems, we can understand her frustration with some children who may use restrooms to get out of class, but there has to be a better way than this. What do you think?
Consumer Alerts
Endo Pharmaceuticals Opiates
The US Food and Drug Administration (FDA) is advising healthcare professionals and patients of a potential problem with opiate products manufactured and packaged for Endo Pharmaceuticals by Novartis Consumer Health at its Lincoln, Nebraska manufacturing site. Due to problems that occurred when these products were packaged and labeled at the site, tablets from one product type may have carried over into packaging of another product. This could result in a stray pill of one medicine ending up in the bottle of another product.
The FDA advises patients and healthcare professionals to examine opiate medicines made by Endo in their possession and ensure that all tablets are the same. Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program.
The Latest IC 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.
Is It Time To Look Beyond The Bladder?
IC researcher Ken Peters MD, chairman of the Urology Department at Beaumont Hospital (Royal Oak, MI), has written a thought provoking editorial in the February 2012 edition of the Journal of Urology. In "Is it time to look beyond the bladder?" he boldly says "In my practice, I spend most of my time telling patients that they do not have interstitial cystitis, but rather have significant pelvic floor dysfunction."
In patients struggling with IC and its common related conditions, he said "the bladder appears to be an innocent bystander in a more systemic process." He reports that many of these patients don't appear to respond well to bladder directed therapy, but that "a multidisciplinary approach including intravaginal myofascial release, transvaginal trigger point injections, intravaginal (muscle relaxants), guided imagery, integrative medicine modalities and pyschological support" can improve IC symptoms. The exception, of course, is the treatment of Hunner's Ulcers which, he said, are treated with cautery or laser therapy.
This comes as no surprise to the IC patient community given the fact that doctors have long described finding pelvic floor muscles so tight in IC patients that they resemble taut rubber bands. While pharmaceutical companies may have promoted the "bladder wall" theory of IC, there is no doubt that most IC patients also have signs of pelvic floor dysfunction. One research study determined that 70 to 90% of patients with IC symptoms have muscle tension and/or trigger points present. It's also significant to note that the only NIH sponsored clinical trial that demonstrated an improvement in IC symptoms was, in fact, utilizing pelvic floor myofascial therapy.
Dr. Peters made a clear and compelling case for the evaluation and treatment of pelvic floor dysfunction in patients struggling with bladder symptoms. We say BRAVO!!!! .
Source: Peters KM. Interstitial Cystitis-Is it Time to Look Beyond the Bladder?J Urol. 2012 Feb;187(2):381-2. Epub 2011 Dec 15
More IC studies
- Diet and its role in interstitial cystitis/bladder pain syndrome (IC/BPS) and comorbid conditions.
- Botulinum toxin type A for the treatment of lower urinary tract disorders.
Current IC Clinical Trials
Clinical trials are a vital part of the search for a cure for IC. Not only do they allow patients to participate in cutting edge research, but they also can help patients receive treatment who may not have access due to a lack of health insurance. There are 25 studies currently underway as listed at clinicaltrials.gov! Here are a few of the studies that you can find for IC!
LiRIS® Clinical Trial Launched in USA & Canada
A new research study is being conducted at investigational sites in the US and Canada for women diagnosed with Interstitial Cystitis. The purpose of this study is to determine the safety, effectiveness and tolerability of an investigational product that delivers the drug lidocaine continuously over 14 days directly into the bladder. Known as LiRIS® , the product is a soft silicone tube containing lidocaine that is placed in the bladder using standard urological procedures in the urologist's office and then is removed 14 days later. This study compares the lidocaine system with a placebo system, the same silicone tube with no active drug.
The study requires participants to complete up to five clinic visits and two phone calls over an eight week period. You may be eligible to participate in this study if you are a female 18 years of age or older, diagnosed with Interstitial Cystitis, and experiencing bladder pain, along with additional criteria. You are not eligible for the study if you are pregnant.
If you are interested in finding out more about this study, please go to www.clinicaltrials.gov for more information and site locations near you.
New Articles, Podcasts & Blogs
Do you write about your IC? Have a blog that you think might help others. We'd love to hear about it so that we can share it with our readers! Please e-mail it to: jill@ic-network.com
- Jenny's IC Party - Her latest blog, "The Incredible Egg" has some tasty new breakfast ideas!!! Check out her entry on Fudge too! Yummm!!!!
- Confident Choices by Julie Beyer RD has three very cool new entries on dancing, recognizing and treating depression and how to clean out your medicine cabinet!
- Sometimes - An IC Poem- by Carin Willis
- Ten Steps For Living Well with IC - About.Com
Jill's Journal: My 2012 Facts About Sex and IC
(By Jill Osborne)
Let me ask you a question. If your partner had a broken hip, would you insist that they have sex with you even if it would provoke pain? I don't know a single person who would say "yes, they must have sex with me to keep me happy even if it hurts" Yet, in some cases with IC, this line isn't as clear cut. Some patients have reported that their partners insist on sex during painful IC flares while others complain of partners who are inflexible and unwilling to try new, less painful, intimacy approaches. Still others complain that their partners don't offer them hugs and affection. It's 2012 folks and it's time to set the facts straight.
Fact # 1 - Every couple will eventually have moments when sex is difficult if not impossible for one or both partners due to accident, illness and the like. There will be times when one partner wants to have intimacy and the other doesn't. How that couple handles those moments is the ultimate test of the maturity and strength of that relationship. Obviously, most partners would be appalled to learn that sex is painful and would look for ways to reduce pain and discomfort while still maintaining some intimacy.
Fact #2 - Pain and/or having a chronic illness can affect our self esteem. Some women with IC think "My husband will leave me if I don't have sex with him". Yet, isn't it strange that if her husband was the ill partner, she would be not only be by his side, but be offering any help that she could to make his pain better. Why doesn't she believe that she deserves the same care and respect from her partner? Isn't that what a marriage is all about, being there "in sickness and in health?" You deserve the attention, support and care of your partner and family.
Fact #3 - If illness makes us damaged goods, then we're all damaged goods. For those patients who encourage their partner to have an affair with statements like "Honey, you deserve a whole woman. I encourage you to find someone to have sex with. You can leave me," you are doing yourself a terrible injustice. Illness is a reality for anyone and everyone. We will all face struggles in our lifetimes and an inability to have sex does not invalidate our love for our partners and our role in the family.
#4 - Your partner can't read your mind. In one of the most memorable support group meetings we had here in Northern California, a husband and wife had a verbal altercation. The wife stood on one side of the room, pointed at him and said "You don't love me anymore. You won't even hug me." The husband truthfully responded " I don't want to hurt you so I'm afraid to touch you. I didn't know you needed a hug." In a huff, the wife very unfairly said "Well, you should know." That, of course, wasn't even remotely fair to her husband. If you are the patient and you need a hug, you need to ask for a hug. Similarly, if you're the partner and want to have sex, please ask "Honey, do you think we might be able to have sex tonight?" If she says "yes, but gently," then proceed gently. If she says "No, I'm in pain," then give her a hug and kiss, and tell her that you love her. Remember, too, that "no" isn't a rejection of you. She loves you. All it means is that her body, at that moment, is in pain.
IC Awareness - A New Contest For Published IC Articles
IC patient Beverly Davenport is challenging her fellow patients to help raise awareness for IC and given the article about a New York City school teacher who is restricting bathroom access, there couldn't be a better time than the start of a new year. Her challenge to you? Get an article published about IC in your local newspaper in the next four months and you could win some great prizes! Here's Beverly's announcement!
CONTEST RULES:
You must get your local newspaper to publish an article about Interstitial Cystitis. THIS CANNOT BE IN THE LETTER TO THE EDITOR SECTION. This has to be an actual article, MUST be informational and also include the personal struggle you have dealt with. It DOES NOT need to include your name in the article. Also, remember we should never offer medical advice in an article such as this because we are not qualified. The reader should be urged to go see their doctor if they suspect they could have IC! The goal is to get readers to empathize with your struggle and become aware of what IC is. It should make them want to help the cause by donating and/or spreading the word. This could also be a help to someone who doesn't realize that they or a family member might have this illness. You might want to include a website or two that could give them more information or a place to donate. You could help change someone's life!!
If your newspaper is interested in publishing your article and they would like to speak with someone to make sure all the facts are up to date and correct, expert interviews can be arranged!
THE PRIZES:
1ST PLACE:
* One hr. of personal coaching with Jill Osborne, the President of the IC Network!
* IC Network Subscription
* $50 Gift Certificate for the IC Network Shop
* The Happy Bladder Cookbook (E-book with dedication page to winner) from the author herself, Mia Elliot
* Ending Female Pain by Isa Herrera
* The IC Survival Guide by Dr. Robert Moldwin
* A Gift Basket of Surprise Goodies from the IC Network
* Set of flare management and diet guides (PDF file) from the IC Network
2ND PLACE:
* IC Network Subscription
* $50 Gift Certificate for the IC Network Shop
* The Happy Bladder Cookbook (E-book with dedication page to winner) from the author herself, Mia Elliot
* Ending Female Pain by Isa Herrera
* A Gift Basket of Surprise Goodies from the IC Network
* Set of flare management and diet guides (PDF file) from the IC Network
3RD PLACE:
* IC Network Subscription
* $25 Gift Certificate for the IC Network Shop
* The Better Bladder Book by Wendy Cohen
* A Gift Basket of Surprise Goodies from the IC Network
* Set of flare management and diet guides (PDF file) from the IC Network
EVERYONE ELSE WHO ALSO GETS AN ARTICLE IN THEIR LOCAL NEWSPAPER:
* $25 Gift Certificate for the IC Network Shop
* Set of flare management and diet guides (PDF file) from the IC Network
****BONUS: EVERYONE WHO GETS AN ARTICLE PRINTED IN THEIR LOCAL NEWSPAPER WILL BE RECOGNIZED ON THE IC NETWORK WITH THEIR ARTICLE INCLUDED (IF ALLOWED BY NEWSPAPER PUBLISHING THE ARTICLE)!!!!!!****
Entries
LET THE IC AWARENESS BEGIN!! Please let Beverly now if you have any questions. She will be checking to make sure everyone is being honest and not finding an article already in print from another paper. WHEN SUBMITTING YOUR ARTICLE, YOU MUST INCLUDE YOUR NAME, YOUR LOCAL NEWSPAPER, AND PROOF THAT IT WAS PUBLISHED
Contact Info: Beverly Davenport bvrlydvnprt@yahoo.com
Trouble Accessing the ICN Site? We had to block access to some servers.
Last December we experienced several serious hacking attempts to our server that originated from China. We have excellent server security and these attempts were not successful. However, to protect our users from future attempts we chose to block IP address blocks associated with Chinese, Phillipine and Vietnam internet service providers. Unfortunately, some ICN users from Europe and the USA have accidentally been caught up in the blocks.
We would like you to test your connection to determine if you've been blocked so that we can restore your access immediately.
How do you know if you've been blocked?
When you try to access our websites (http://www.ic-network.com), you would get a constant "loading" message but the site will never display. You may also get a "this server is unaccessible" message.
How can you get unblocked?
We need to add your IP address to the "white list" on our server to restore your access.
How to determine your IP address?
Please visit the following website (http://whatismyipaddress.com/). When you load their front page, it will display your IP address.
Please email your IP address to icnetwork@sbcglobal.net and ask that you be added to our white list. We will then verify the address and restore your access.
Our apologies for the inconvenience. The blame lays entirely with a growing horde of hackers and spammers on the web. Grrrr!
We're Looking For:
MD & PT Recommendations Throughout The World
If you have a doctor that has treated you compassionately, please share their names with us! Please visit our clinical database and see if your doctor is listed. If not, please use our recommendation form. We'll contact each doctor (your name NOT included to protect your privacy), let them know that they've received a great review for their patient care, share new IC resources with them and ask if they would like to be listed on our site.
Click here to search our database
Click here for our doctor recommendation form!
Bladder Photos
Thanks to our readers, we're developing a fabulous collection of IC bladder photos but we still need more! Do you have any pictures of your bladder taken during a hydrodistention or cystoscopy? If so, we've love to include them in our archive.
Scanned pictures and/or videos can be e-mailed to: icnetwork@sbcglobal.net
New IC Support Groups & Support Opportunities
~ Find A Support Groups
IC Support Groups will help you learn more about IC, about resources in your area and, most of all, to make some great new friends! Don't suffer in silence at home, alone. If there is a group near you, call the group leader and introduce yourself!. Support groups are located throughout the USA, Canada and in several other countries.
Click here to search for a support group in your state or province.
Click here to search our list of international IC organizations
~ Join an Online IC Support Chat
ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders. Join us live from the comfort of your home. Please note! Chats are free for all. No log in name and password are required. Just type in a user name and go!
When: 1st & 3rd Monday of the Month, 5PM PST to 7PM PST
Where: ICN Chat Room
~ Need a Speaker for your group?
Jill Osborne is happy to speak to support groups via skype as a guest speaker. It works beautifully and can include Q&A from the audience. All you need is a laptop or PC with skype, and we can do full video and audio! Super fun!
What's New in the ICN Shop!
http://www.icnsales.com - (707)433-0413
Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive web site, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!
Dollie's Carob Candies Back In Stock
Just in time for Valentines Day! Our most popular candy, by far, are the wonderful and tasty carob products from Dollie's Delectables. They've been so popular that Dollie has had trouble keeping up with our demand. Our newest order has arrived and is now instock. Get them while you can. They will fly off the shelves!
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Christina's Garden Microwaveable Heating Pads
Developed exclusively for the ICN for bladder & pelvic pain patients, this 100% cotton flannel microwavable pad fits perfectly over the pelvis, extending from the just above the belly button right down to the pubic bone. Handmade in Northern California by a young pelvic pain patient who is an expert seamstress and brings a new idea to the table, custom scents. The challenge with corn based pads is that they often smelled like hot corn. These have a lovely, light and refreshing fragrance, embracing the concept of aromatherapy.
Three scents & unscented pads are available, including:
- organic chamomile
- organic peppermint
- organic cinnamon, cloves and orange peel
- unscented.
Various patterns and colors available.
New Chair Cushion Ideal For Patients Who Struggle To Sit On Hard Chairs
We found this new cushion and fell in love. In fact, it's now being used in the ICN offices. Rather than a foam cushion, this uses air to provide a soft, giving barrier between a sensitive bottom and chair surface. This cushion works well for patients with muscle tenderness, pelvic floor dysfunction and other bladder/pelvic foor disorders. If you're finding sitting difficult, this affordable cushion is well worth trying. Comes in two sizes 17" or 19" square.
IC Friendly Hot Teas
Davidson's Teas has a line of organic herbal teas that come in several IC friendly flavors and work beautifully as hot, iced or sweet teas. From Carob Mint, reminiscent of a chocolate mint julep, to Caramel Peach with Coconut to the light, refreshing and honey sweetened French Vanilla tea, we're sure you'll enjoy trying some of these!
CHERRIES JUBILEE is a luscious herbal tea combines the sweet flavor of ripe cherries with toasted almonds. |
CAROB MINT combines the round and delicious flavors of chocolaty carob, barley, Rooibios and Speamint. |
CARAMEL PEACH WITH COCONUT is a full-bodied, delicious herbal tea, combining the flavors of sun-ripened peaches with buttery caramel. |
FRENCH VANILLA has a deep true vanilla character with just the right touch of sweetness from added honey and slight caramel finish. |
RASPBERRY CREAM CARAMEL is a round and mellow herbal tea, combining the flavors of creamy caramel and vine-ripened raspberries. |
VANILLA CREAM SPICE captures the delicious flavors of a rich dessert, chocolaty, nutty with spice notes and a rich dark body but without the calories! |
