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4th Annual Pelvic Health Conference

PureHope

As we announced last month by email, PureHope, a non-profit organization based in Texas, is having it's 4th Annual Pelvic Health Conference on Saturday, September 13, 2008 in Houston, Texas. PureHope is excited to announce that all registered guests for the conference are invited to attend a special Meet the Guest Speakers Reception on Friday, September 12, 2008 (4-6PM) where you will be able to meet with Dr. Michael Pezzone and Dr. Theoharis Theoharides one-on-one.

All attendees that attend the early registration receptions will also receive an additional ticket for the door-prize drawing to be held at the end of the conference on Saturday.  There are sure to be other surprises - you will not want to miss a minute!  Conference registration will also be accepted at the reception. Please visit their website at www.pure-hope.org to register online using paypal or to request an invitation.

The Meet the Guest Speakers Reception is sponsored by the Interstitial Cystitis Network and Alaven Pharmaceuticals (makers of Cystoprotek)

 

IC Optimist - Summer 2008 Now Available

The IC Optimist Summer 2008 issue is now available and will be delivered by email and in print this week to our subscribers! it is also available in single print issues.

This expanded issue of the Summer 2008 IC Optimist includes:

(1) Is a Natural Approach a Safer Way to Treat IC – ICN Editorial One of the most frequent questions that I get in the ICN office is “How Can I Treat IC Naturally?” It’s a tough question. There’s an assumption on the part of some people that medications aren’t as safe as products that are herbal or “natural.” We cover a wide variety of issues including product quality, promised “cures” for IC and how to select therapies safely.

(2) Conference Reports – AUA 2008 Read the latest research highlights from the American Urological Association Annual Meeting, the largest international urology conference of the year.

(3) Conference Report - “Defining the Urologic Chronic Pelvic Pain Syndromes.” NIDDK International Symposium Leading IC specialists from around the world came together in Bethesda, Md., June 16 and 17 at a conference sponsored by the NIDDK. The event was subtitled as a new beginning as researchers debated a few hot issues in IC right now: the potential name change, the connection of IC to other diseases and the possibility that IC is more of a centralized disease and less bladder specific.

(4) Conference Report – ESSIC 2008 The European Society for the Study of IC held their annual meeting in Rome, Italy this Spring. Read the highlights of new research presented at their conference in this summary.

(5) The Latest IC Research

(6) Self-Help Tip of the Month: Medication Side Effects After a very scary and unexpected reaction to a new medication, ICN Founder Jill Osborne shares insight into medication safety, side effects to common IC medications and resources that you can use today to research your medications.

(7) American As Apple Pie: A Fresh Tastes Column by Bev Laumann Leave it to Bev Laumann, the ultimate IC diet guru, to balance the science with something that we all need, great comfort food. In American As Apple Pie, she shares tips on finding apple varieties that can be much more bladder friendly and offers recipes on Apple Meringue and Fennel Scented Apple Cake. Enjoy!

(8) Alternative Vs. Traditional Therapies – An IC Lifestyles Column by Gaye Sandler Gaye Sandler, author of Patient to Patient: Managing IC & Related Conditions, shares her thoughts on the use of these two, often confusing, approaches to treating IC.

(9) Consumer Safety & FDA Alerts - The latest batch of recalls include a recalled generic hydroxyzine, various pain medications, cipro and more!

(10) ICN Resource Guide - An updated catalog of the many resources currently available to patients around the world!

Available for purchase by e-mail or in print!

 

ICN Special Report - Managing IC Flares, 2nd Edition

Each year, the ICN produces an expanded edition of our magazine on a special, indepth topic. In 2007, we covered bladder pain. In 2008, we have produced a second edition of our Special Report on Managing IC Flares including a brand new, in-depth section on treating flares by type. All Angel and Gold subscribers will receive complementary copies with their latest IC Optimist. This issue is also available for purchase as individual copies.

In this issue:

(1) Understanding Your IC Flares
- What does a Flare Feel Like
- How Does a Typical Flare Begin
- Why Do IC Flares Occur
- What Should I Do if I Feel a Flare Begin
- Could my Flare Be A UTI

(2) Eight Common IC Triggers

(3) Flare Treatment Guide
- Bladder Wall Irritation - From Diet
- Bladder Wall Irritation - From Hormones
- Pelvic Floor Flares - From Driving or Exercise
- Pelvic Floor Flares - From Sex
- Urine Burn or Vulvodynia Flares
- Flares While In A Car
- Flares While Traveling
- Flares At Night

(4) What Not To Do During a Flare

This report is available for purchase by e-mail or in print!

The Latest IC Research

Breakthrough Article Released - IC Phenotypes

We've always known that patients have different combinations of symptoms and physical findings. Some have just frequency and urgency, while others struggle with intense pain. Some may have Hunner's Ulcers, while others little or no visible damage in their bladder. Some have pelvic floor dysfunction while others struggle with a variety of related conditions, such as vulvodynia and/or IBS. Some may have infection while others have none.

In this article, researchers Dan Shoskes and Ray Rackley (both of the Cleveland Clinic), J. Curtis Nickel (Queens Univ) and MA Pontari (Temple Univ) propose a brand new classification system for IC & prostatitis which acknowledges, for the first time, that IC & prostatitis (aka. urologic chronic pelvic pain syndromes) have "subsets" or "phenotypes." They also provide a clear explanation as to why these often occur.

"Most patients describe an initial event, such as a UTI, sexually transmitted disease or local trauma that ... set into motion the events that eventually led to UCPPS." they offered. Once an injury occurs, a response occurs in the urinary tract tissues including inflammation, upregulation of chemokines and cytokine release. All bad!

If the bladder wall/GAG layer is damaged, urine may irritate nerves in the bladder wall and cause mast cells to release histamine. The inflammation can then trigger pain which causes the bladder to spasm and the skeletal muscle of the pelvic floor to contract (aka pelvic floor dysfunction), such as the pain which occurs during intimacy and/or driving in a car. Long term pain can then contribute to neuropathies inculding an increased perception of pain and/or allodynia. All of these can then contribute to psychological effects, such as depression, pessimism, catastrophizing which can then "perpetuate the pain cycle through catecholamine release."

The challenge is that patients often present with very different symptoms and findings, thus explaining why some IC clinical trials seemed to be doomed to failure. Would, for example, a patient with pelvic floor dysfunction respond to Elmiron, a bladder coating, in a clinical trial?? Probably not. Would a patient with Hunner's Ulcers without any additional muscle problems respond to physical therapy?? It seems unlikely.

The researchers now propose that patients be classified based upon six new subsets and that these subsets be used to help create a customized treatment program and, perhaps, help better target subjects participating in research studies. Patients can fall into one or several categories. Let's take a look at the subsets.

(1) Urinary Symptoms. Do patients have bothersome frequency, urgency, pain?? Do they struggle to empty their bladder?? These patients might be treated with dietary changes, anticholinergic and/or alpha blockers.

(2) Organ Specific Findings. Do patients have evidence of damage or trauma to the bladder or prostate (i.e. petechial hemorrages, Hunners Ulcers, etc.) These patients might be treated with typical IC and CPPS therapies such as Elmiron, rescue instillations, quercetin, bee pollen, etc.

(3) Tenderness of Skeletal Muscles. Do patients have any muscle trigger points, spasms in the pelvis or belly? These patients are generally treated with physical therapy. Stress reduction is also important because stress can trigger muscle tension.

(4) Psychosocial. Do patients struggle with depression? abuse?? catastrophizing? These patients often benefit from counseling, various cognitive & behavioral therapies and/or the use of antidepressants. Stress reduction is also important.

(5) Neurologic. Do patients struggle with any of the related conditions to IC, such as IBS, fibromyalgia, chronic fatigue syndrome, vulvodynia? Some therapies may include various neuroleptic drugs such as pregabalin, amitryptiline, acupuncture and pain management. Stress reduction is also, again, important for these patients.

(6) Infection. Do patients have evidence of infection? (i.e. positive urine cultures, etc.) These patients are treated with antibiotics usually selected through antibiotic sensitivity testing.

In the article, the authors did a superb job outlining treatment options for each section including a very nice blend of traditional vs. complementary therapies. For example, a patient with bladder wall damage, pelvic floor dysfunction and depression can be treated with elmiron, physical therapy and counseling.

This phenotyping represents a new, flexible and dynamic way of viewing IC/PBS and prostatitis that will, undoubtedly, provide a better structure for selecting treatments... but also for creating new, more targeted clinical trials. It's a brilliant move! The only thing we would have added is a phenotype related of pudendal neuralgia for those patients who have unusual positional symptoms (i.e. pain only when sitting) which can be the result of a pudendal nerve entrapment.

Our gratitude to the authors! You've proven, yet again, that you're truly innovate IC researchers and clinicians. We say Bravo!!! The article can be ordered directly from the journal. Click here for more info!

Source: DA Shoskes, JC Nickel, RR Rackley and MA Pontari. Clinical phenotyping in chronic prostatitis/chronic pelvic pain syndrome and interstitial cystitis: a management strategy for urologic chronic pelvic pain syndromes. Prostate Cancer and Prostatitis Diseases 22 July 2008

More Studies Of Interest

Conference Report

Pain of Urological Origin (PUGO) - August 15-16, 2008

This has been a spectacular year for meetings which covered IC and pelvic pain, including AUA, NIDDK and ESSIC 2008. The fourth major conference of 2008 was held by the International Association for the Study of Pain (IASP) PUGO Interest Group. They held a two day summit to discusss pelvic and urogenital pain that featured a noteworthy panel of presenters from around the world. Curtis Nickel discussed his new phenotypes for pelvic pain syndrome. Fred Howard MD discussed endometriosis pain syndrome. Thibault Riant MD discussed pudendal nerve entrapment. Many more speakers were included. Read Dr. Phil Hanno's summary of the conference at Urotoday here!

IC In The News

New Treatment Looking Positive

Newswise — For the millions of sufferers of a bladder condition called painful bladder syndrome/interstitial cystitis, hope is on the way, developed by urologic surgeon and researcher Lowell Parsons, M.D. of the University of California, San Diego Medical Center.

“What our team has identified is an experimental drug therapy that can provide pain relief to patients within 20 minutes,” said Parsons, professor of surgery at UC San Diego School of Medicine. “Depending on the individual, in my experience, one dose can last from 6 to 40 hours. The ability of the therapy to provide immediate relief is something entirely new for sufferers of interstitial cystitis.”

“Women who suffer from this condition may find themselves having to urinate ten or more times per day, usually have pain or symptom flares after sexual intercourse, and frequently have chronic pelvic pain,” said Parsons. “Fortunately, given the right diagnosis, it’s treatable.”

The drug therapy, with positive results in a recent Phase 2 study, is a combination of an anesthetic and heparin delivered directly into the bladder via a catheter. The anesthetic provides rapid pain relief while heparin restores the protective mucus layer of the bladder.

Normally the bladder is protected by mucus, a slippery substance made up of mucin, water, cells, and inorganic salts. The layer helps the bladder store urine safely and comfortably. In its absence, irritating urinary salts such as potassium leak into the bladder wall injuring nerves and causing pain.

Triggers for flare ups of interstitial cystitis are sexual intercourse, menstruation, exercise, flying in planes or travel that requires extensive sitting, and pelvic surgery. Parsons estimates that one out of every four women in the U.S. suffers from some form of this condition while 6-8% of men may exhibit symptoms. Children who are late bedwetters sometimes show early signs of the condition.

Stellar Pharmaceuticals Announces Successful Completion of Uracyst Study

Stellar Pharmaceuticals Inc. and Watson Pharma, Inc , have successfully concluded the first and only placebo controlled study with Uracyst®, a bladder instillation for the treatment of IC/PBS approved for use in Europe and Canada. This study was a multi-centre, randomized, double blind, evaluation of the efficacy and safety of Uracyst versus placebo in patients with Interstitial Cystitis/Painful Bladder Syndrome. The positive results of this study provide Watson with a good solid basis, to continue to move closer to US FDA approval.

In Memorium - Dr. Paul Fugazzotto

If you've been involved in IC in the past decade, you probably recognize this name. Dr. Paul Fugazzotto was affectionately known as Dr. Fuzzy by IC patients near and far. A microbiologist, he believed that some IC patients struggled with previously undiagnosed low count bladder infections, often entercoccus, which he found through the use of broth culture testing. Patients often mailed him urine which he analyzed in his laboratory in South Dakota and then offered suggestions on which antibiotic to use based upon antibiotic sensitivity testing. He passed away at the age of 95 on August 6, 2008. (Read his obituary or leave a guestbook message for his family!)

I had the pleasure of having lunch with Dr. Fugazzotto at a conference several years ago and he was a thoroughly delightful and charming man who, clearly, cared about those who were suffering. Quite elderly in his late eighties, I remember him talking with love about his wife and family. In the face of opposition, he passionately stood his ground and debated the role of infection as a possible cause of IC.

His approach is often debated on-line by patients who are "pro" or "con" about the role of bacteria in some IC patients. Interestingly, in our previous article, infection is classified as a possible phenotype/subset in some patients with IC and prostatitis. Clearly, a subset of patients may have had some type of infection, perhaps triggering their initial symptoms. Unfortunately, other research studies have not consistently found bacteria in the urine of IC patients. Treatment with long-term antibiotics is also controversial due to the risk of developing yeast infections and resistent infections. There is simply no easy answer here.

What we can say, however, is that Dr. Fugazzotto was a beloved figure who cared deeply about the patients that he worked with. A humanitarian, he spent countless hours talking with patients over the years, often returning phone calls to patients in crisis. His legacy is undeniable; he had an inquiring mind combined with a heart of gold. We honor his efforts and career. He will be missed.

If you are interested in exploring the role of infection in IC, you can ask your local urologist and/or laboratory if they would perform testing. An overnight culture is typically done yet, for low count infections, may not be able to isolate the infection. Broth culture testing typically takes four or more days and is more difficult to locate. Read more about the antibiotic debate.

 

New IC Cookbook

Confident Choices: A Cookbook for IC and OAB

Due later this month, this is the long awaited sequel to Confident Choices: Customizing the IC Diet. Author Julie Beyer RD has now created an cookbook filled with more than 200 IC friendly recipes. We are currently accepting preorders at the firm price of $18 per book. However, the price will increase later this month.

Click here for more info and to place your pre-order.

 

Hot Topics in the ICN Forum

Success Stories From IC Patients

From diet to treatments, alternative therapies to neuromodulation, you'll find many self reported success stories in this discussion forum. Read the discussions

Opioid Pain Relievers Can Make Pain Worse in Some Patients

Why do some urologists refuse to prescribe pain medications?? This article explains why opiate pain medications can, for some patients, make pain worse. Read the discussions.

What Do You Think Started Your IC?

Over the years, IC patients have reported a wide variety of events, injuries or trauma's that they believe triggered their IC. What do you think started your IC?? Share your thoughts in this discussion board.

 

Self-Help Tip of the Month: Finding A Fuel Efficient Yet IC Friendly Car

(By Jill Osborne, MA - ICN President & Founder)

Okay, it's time once again to renew our car discussion. It was almost five years ago exactly that I posted my first brand by brand review of those cars that I found to be the most comfortable for my IC and pelvic floor dysfunction. My beloved Buick Rendezvous, the ultimate IC friendly car, is now costing $70+ to fill up. Thus, for a lot of us, our cars have now become too expensive to run. it might be time to look for a more fuel efficient vehicles.

My worry?? Are the smaller hybrids comfortable? I'd like to be able to drive down the freeway without clutching my bladder in pain. Cars and trucks greatly exacerbate our IC symptoms if they have uncomfortable seats and a bouncy suspension. Thus, our goal is to find a fuel efficient vehicle that rides smoothly with, preferably, softer seats.

One of my favorite cars from five years ago was a Volvo sedan. The drive was flawless, very smooth and comfortable. The problem was the car seats. They were hard leather with little padding. After just a few minutes, they hurt like the dickens. Of course, both the Toyota Corolla and Honda Accord get solid reviews for their smooth suspension and gas mileage but, yet again, those car seats were just too hard. The Toyota Sienna and Honda Accord, not exactly fuel efficient vehicles for 2008, were the more comfortable at that time and what made them most appealing was the possibility of placing a portapotty in the rear compartment for road trips. Hey, I'm an ICer. I think about things like that. The Nissan Murano was, IMHO, the best of the most comfortable of the foreign cars back then.

American vehicles were, by far, the most bladder and pelvic friendly. They had thicker, most comfortable cushioning in the car seats and backs, and also offered softer fabric instead of leather seat covers. The mid size SUV's and sedans also seemed to have much better smoother suspensions, such as the GMC Envoys or Yukons. But, like my Buick, they just aren't that economic.

I had a gentleman call me in the office just a few weeks ago raving about his 2007 Lexus because he found the seats were very comfortable and easy to adjust. Not, of course, that I can afford a Lexus but it's worth mentioning.

So, I'd like to hear your thoughts?? What cars are you driving these days?? Are you finding the hybrids a comfortable ride?? If so, which models are you driving?? All feedback and ideas welcome! Please post your comments in our new Self-Help Forum here!

 

IC Diet Quick Recipe - Blueberry Salad Dressing

This recipe was contributed by ICN Member 5andi and we think it's great!

Ingredients:

1 quart pure organic blueberry juice (beware of citric acid preservatives)

3 tablespoons organic cornstarch

1/4 cup sugar in the raw or 1/8 cup regular sugar and 1/8 cup light brown sugar (dark brown caramel coloring)

1 cup olive oil

Combine the blueberry juice and cornstarch in a pot over a low heat. Stir until the cornstarch is completely dissolved. Turn up the heat a little and add the sugar, stir constantly to avoid lumps. Heat until the mixture thickened and is reduced in volume by about 1/3. It should be the constancy of a thin jam. Remove from the heat and allow it to cool, but not cold. Pour the blueberry mixture into a one quart bottle and add the olive oil. Shake well.

If you’re not sensitive to small amounts of soy, you can add ½ teaspoon of lethicin as an emulsifier (prevents the blueberry mixture and the oil from separating so much).

We're looking for IC friendly Fall and Holiday recipes to share with others. Please share your favorites with us today in our new recipe & menu forum.

 

New IC Support Groups & Support Opportunities

Can you imagine how great it would feel to walk into a room filled with others who understand exactly what you're going through?? Having IC is difficult at times and doing it alone is unnecessary. Why recreate the wheel and try to figure this out on your own when there are dozens of independent IC groups around the country who are waiting to help you! IC Support Groups will help you learn more about IC, about resources in your area and, most of all, can help you 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! Click here to find a support group near you!

New IC Support Groups

The IC Support Group of Orlando, FL - Group Leader: Brigitte Turner - E-mail: turnerucf@hotmail.com

This new group hopes to have their first meeting on Wednesday, Sept. 20th 2008 and, afterwards, will continue meeting on the 2nd Wednesday of each month.

IC & Pelvic Pain Support Group of Port Huron, MI - Contact Sherry Campbell 810-320-0224 or anitakure@comcast.net

Meetings: Every other month beginning October 2008 Please contact for location and time.

ICN Live Support Chat Schedule

The ICN is proud of our role in launching the first bladder support groups EVER on the web back in 1994. ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders, Leslie Grinnell & Kathi Heintz. Join us for a typical support group meeting live from the comfort of your home. What could be easier?? 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

 

IC Resources From The ICN Mail Order Center

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