CAFÉ ICA, VOLUME 8, NUMBER 4, April 2008

This issue of Cafe ICA is sponsored in part by educational grants from
Uroplasty
Medtronic Foundation
Alaven Pharmaceutical LLC
Astra Tech, Inc

CAFE ICA, VOLUME 8, NUMBER 4, April 2008
Your monthly electronic source for the latest interstitial cystitis medical highlights, self-help & coping strategies, and ICA news, brought to you by the Interstitial Cystitis Association since August 2001.

In this issue...

1. Hot Off the Press
1.1 Register Now for the ICA’s Tampa Regional Forum!
1.2 National Study on IC/PBS
1.3 ICA Contributes to National Fibromyalgia Association Publication
1.4 NIDDK June Symposium: Defining the Pelvic Pain Syndromes
1.5 ICA Offers New Pilates DVD!
1.6 ICA Question of the Week – Be Sure to Participate!
1.7 Spring ICA Update Now Available!

2. Voices in the IC Community
2.1 ICA Board Member Continues IC and Pain Studies at U of Alabama
2.2 AUA Foundation: Patient Advocacy Summit Convenes
2.3 IC Champion Takes On the Boston Marathon
2.4 Pharmacist Educates Her Local Medical Community about IC

3. News YOU Can Use!
3.1 All Things Diet (and IC)
3.2 URG 101 News
3.3 ICA Call to Action! Overlapping Conditions Meeting

4. The Latest IC Research Highlights

5. Upcoming Conferences

6. Products That Can Help YOU Today!

From the ICA Mailroom:
The ICA website has been a very important part of my treatment, providing me with important information I can further discuss with my doctor and family, as well as take comfort in the fact that I know that I am not alone in this battle. And you can quote me on that! I again thank you and ICA so much for being there! - Leslie S.

 

1.0 Hot Off the Press

1.1 Register Now for the ICA’s Tampa Regional Forum!

The ICA’s first event—of the 2008 two-part series—kicks off with the a half-day forum in Tampa, Florida, on Sunday, July 13, 2008, at the Sheraton Tampa Riverwalk Hotel.

Admission is $25 per person and includes a “goodie bag” and educational materials. Plus, IC-friendly refreshments during the afternoon break!

Our featured speaker is ICA Board of Directors and Medical Advisory Board member, Robert Evans, MD. Dr. Evans will be joined by Molly Miller, PT, a Tampa-area pelvic pain specialist.

Registration begins at 12 noon. The program runs from 1 pm to 5 pm and includes talks by the guest speakers followed by audience Q & A.

Local IC support group leader, Iliana Brockman, will be on hand along with our new Executive Director, Barbara Gordon, and other ICA staff.

Watch for you invitation in an upcoming email blast in the next few weeks! The ICA will also be distributing information flyers to Tampa-area urology practices.

CLICK HERE TO REGISTER

A second 2008 ICA Regional Forum, location still to be determined, is in the planning stages for late summer. Stay tuned!

 

1.2 National Study of IC/PBS

With funding from the National Institute of Diabetes Digestive and Kidney Diseases (NIDDK, one of the US National Institutes of Health), the RAND Corporation located in Santa Monica, California, is conducting a national study of the prevalence of IC/PBS symptoms in women and the effects of symptoms on the lives of women who have them.

This study involves 60-minute telephone surveys conducted by RAND and women are selected to participate using a scientific sampling process (unfortunately, women can't volunteer to take part). The ICA was instrumental in the development of this study and, while participation is voluntary, it is valuable for ICA members to take part if they are asked to do so. For further information call Karin Liu, RAND Study Coordinator, at 866-429-6669.

 

1.3 ICA Contributes to National Fibromyalgia Association Publication

Check out the ICA's article about IC in the National Fibromyalgia Association’s e-newsletter Fibromyalgia ONLINE. This issue of Fibromyalgia ONLINE (vol. 8, no. 4) is dedicated to conditions such as IC that have been shown through research and anecdotal evidence to occur more often in people with fibromyalgia. Other related conditions covered in this issue include chronic fatigue syndrome, restless legs syndrome, and Sjogren’s syndrome. Through coordinated projects such as this, the ICA is helping to raise awareness of IC in other patient communities, especially in those whose members are more likely to have symptoms of IC yet may not know that IC exists.

To link to the IC article in this issue of Fibromyalgia ONLINE, please click here.

 

1.4 NIDDK June Symposium: Defining the Pelvic Pain Syndromes

This free symposium, to be held on June 16 and 17 in Bethesda, Maryland at the DoubleTree Hotel, strives to enlist expert opinion related to the multiplicity of factors involved in defining urologic pelvic pain syndromes.

National experts will give updates on such topics as:

• Classifying urologic chronic pain syndromes
• Advanced diagnostic studies for characterizing the pain syndromes
• Epidemiological data for overlap of chronic pelvic pain syndromes
• Developing biomarkers for the chronic pain syndromes, and many other topics

The meeting will explore the pros and cons of developing a unifying definition, as well as the need for phenotyping persons with these disorders. Interactive discussions will be strongly encouraged among speakers, participants, and the panel of consultants. The meeting will be informative for clinicians, basic scientists, patients, advocacy groups, pharmaceutical representatives, and the public interested in developing a further understanding of the urologic chronic pelvic pain syndromes and associated disorders.

A major outcome will be development of a definition of these diseases and their phenotypes, which will be used in future NIDDK-funded research studies and the upcoming network for a Multidisciplinary Approach to the Study of Pelvic Pain (MAPP).

The meeting is open to all; however, preregistration is required because of seating limitations.

For more information including how to register, please click here.

 

1.5 ICA Offers New Pilates DVD!

The ICA is now offering a new exercise program designed just for people with IC!

New Dawn Pilates Vol. 1 offers exercisers with pelvic pain disorders an effective, daily workout plan designed to tone and condition muscle.

This first volume contains over 90 minutes of content and is rated Beginner to Intermediate Level. Unlike other exercise videos on the market, New Dawn Pilates Vol. 1 provides exercises that have been carefully designed to not cause further pain to the pelvic region. Adapting Pilates principles of concentration, flow, and breath, the program offers a total body workout through low impact movements.

Before being diagnosed with interstitial cystitis in 2005, owner of New Dawn Pilates and ex-gymnast, Jenny L. Buttaccio, practiced various forms of exercise and body conditioning daily. Over the past two years her life changed immensely. One of the major areas particularly difficult for her to continue in the same manner as before is exercise. Being a Registered & Licensed Occupational Therapist and a Certified Pilates Instructor, Jenny adapted a system of Pilates-inspired exercise for herself and for others who suffer from chronic pelvic pain.

The New Dawn Pilates DVD features an introduction and a thirty-seven minute tutorial that explains proper and safe body-mechanics for the exercises. The DVD offers menus and chapters created in such a way that a workout is easy to customize. Exercisers can perform the entire workout from beginning to end, or target a specific area one day (i.e. arms, legs, etc.) and a different area another day. This allows you to personalize the workout according to your capabilities and pain levels – and create a program anywhere from 7 to 45 minutes in length. Another feature for pelvic pain sufferers is an on-screen prompt wherever Intermediate-Level exercises appear. This feature allows viewers to “Skip” certain exercises that may be too uncomfortable to perform.

Also included is a bonus workout for those who find it too difficult to perform even the adapted variations of the exercises or for anyone who has just had a rough day. This bonus workout will renew and energize exercisers through simple, fluid motion done completely from a seated position in a chair. It’s called The Rough Day Revitalizer.

To order the New Dawn Pilates DVD, please click here.

 

1.6 ICA Question of the Week – Be Sure to Participate!

The look and feel of the ICA’s website continues to evolve. Thanks to all of you who contribute your feedback to ensure the creation of the best site possible to serve the IC community. One of the latest features on the site is the Question of the Week section on our homepage.

Please be sure to check the homepage each week and to participate in the Question of the Week survey – and to review the results of previous weeks’ surveys.

 

1.7 Spring ICA Update Now Available!

The spring issue of the ICA Update is now en route to ICA members!

The cover features Rainy Day, a watercolor painting by IC patient Diana Dunn.

IN THIS ISSUE

• Meet Barbara Gordon - The ICA welcomes a new Executive Director and honors ICA Founder and President Emeritus, Vicki Ratner, MD
• New Approaches, New Devices for Pelvic Floor Therapy
• Engineer with IC Creates New Life with Art
• Physical Therapy for IC Goes Mainstream with More Techniques, More Education
• What’s New in Neurostimulation?
• ICA Volunteer Uses Her Language Gifts to Give
• Faith, Physical Therapy, Fortitude Help This Sister Face IC
• IC Patients Get Help When They Need It at Tulsa Practice

IN EVERY ISSUE

• Doctor’s Forum: Fred Howard, MD
• ICA News
• ICA Family of Supporters
• Many Gifts, One Goal – IC Patient, Support Group Leader and Advocate, Teresa McCoy
• ICA Resource Material Highlights
• Products that Can Help YOU Today

The ICA Update is mailed to all ICA members donating a minimum of $45.00 (US dollars) or more per year ($60.00 outside the US).

To join the ICA and begin receiving this information-packed quarterly magazine, please click here!

 

 2.0 Voices in the IC Community

2.1 ICA Board Member Continues IC and Pain Studies at U of Alabama

ICA Medical Advisory Board member Ursula Wesselmann, MD, formerly of Johns Hopkins University in Baltimore, is continuing her IC and pain studies at the University of Alabama at Birmingham. Dr. Wesselmann and her research team at the University of Alabama are looking for women to participate in research studies concerning the mechanisms of pain in interstitial cystitis.

If you are between the ages of 19 and 45 and if you have been diagnosed with interstitial cystitis for at least 6 months you might be an appropriate candidate for these research studies. Participants will be asked to record symptoms related to interstitial cystitis in a diary at home for 4 months. Women who are pregnant or have had a hysterectomy are not eligible.

For more information please contact Dr. Wesselmann at:

Phone: 205-934-7703

Email: womensresearch@ccc.uab.edu

(Support: NIH/NIDDK; Principal Investigator: Ursula Wesselmann MD, Dept. of Anesthesiology, University of Alabama at Birmingham)

 

 2.2 AUA Foundation: Patient Advocacy Summit Convenes

On March 31, 2008, the American Urological Association (AUA) Foundation sponsored the inaugural Patient Advocacy Summit. The Summit brought together more than 20 representatives from sixteen patient advocate and direct-service organizations involved in prostate and bladder health and wellness – including our own Barbara Gordon, Executive Director of the ICA.

The AUA convened the meeting to discuss the limited awareness about urologic diseases and sparse funding for urologic research. They proposed creating the Urologic Advocacy Coalition to work collaboratively on raising awareness and advocating for additional research funding in urology. The AUA Foundation proposed the Urologic Advocacy Coalition initially to focus on prostate health and bladder incontinence. More to come on this discussion . . .

 

2.3 IC Champion Takes On the Boston Marathon

Running can be a lonely – even selfish – sport. It's just you and the road, even if thousands of others share the road with you on the way to the same finish line. You reap all the glory and benefits. What if you could do something a little more meaningful at the same time? What if you could do something to help someone else?

Joe and Angela Daczko at the 2007 ICA Capitol Hill Walk.

That's the thought Joe Daczko of Hiram, Ohio, had a few years ago. He gave new purpose to his running by teaming with the ICA to raise awareness and money for research of IC.

Daczko’s cause is personal because his wife, Angela, has suffered from IC for many years. Both have been on a crusade to help others understand and deal with this debilitating disease. For his part, Daczko now takes his IC awareness message with him on all of his runs. Last week he took his message to arguably the biggest runner's stage in the United States - the Boston Marathon.

This was Joe Daczko’s first Boston Marathon. Yes, it was a challenge for him as a runner, but it's a much larger opportunity to raise awareness about IC. He ran the race wearing a t-shirt emblazoned with "This pain stops. Theirs doesn't." Our congratulations to Joe for finishing the 26 mile marathon in just over 3 1/2 hours. Daczko’s time was 3 hours 33 minutes 48 seconds. He averaged 8 minute miles and, from our perspective is a champion in raising awareness about IC!

The Daczko’s message of hope and dedication is sure to inspire Café ICA readers.

 

2.4 Pharmacist is Educating Her Local Medical Community about IC

Laurie Elmes, RPh CDE, is a pharmacist at Columbus Regional Hospital, in Columbus Indiana. Elmes, who has IC, wrote to the ICA early in 2008 and asked for help in giving a March 10 presentation to the Indiana Medical-Surgical Nursing Association. The ICA shared the PowerPoint presentation Interstitial Cystitis: What Healthcare Providers Need to Know with Laurie and also sent along ICA educational handouts.

In a recent correspondence to the ICA, Laurie Elmes wrote,

“I want to thank you for sending me the materials for my IC presentations.

I gave two presentations. The first one was to the local chapter of the Indiana Med/Surg nursing society. I had 10 attendees and they were all very interested and amazed at the severity of IC. They actually made a small monetary contribution to the ICA after this presentation!

The second group was March 26, and it was advertised to all employees of my hospital. I had an audience of 20, including staff nurses, students, physical therapists, and pharmacists. It was received well, there were lots of great questions, and all were impressed with the handouts. I ended up sending out seven more folders of info to people who planned to come but couldn’t make it at the last minute.

So, thank you again for your support! I am also planning to connect with the local group of nurse practitioners and see if I can present this info to them.”

For those interested, here is a link to the ICA Nursing Presentation, which is an online PowerPoint presentation:

http://www.ichelp.org/portals/0/images/featurearticles/ICANursingPresentation.pdf

Our Thanks to Laurie Elmes for her continued dedication to IC education and awareness!

From the ICA Mailroom:

The reason for this email is to let you guys know one more person has been diagnosed with IC and we appreciate your website, your newsletter, all of the information and support. - Laura and Shannon C.

 

3.0 News YOU Can Use!

3.1 All Things Diet (and IC)

Confused about IC and diet choices? You are not alone. Did you know that the ICA's diet survey found that most patients control IC symptoms was through diet?

The ICA tackles IC and diet issues in partnership with IC diet expert Julie Beyer, RD. Julie addresses readers IC and diet questions in this monthly column and helps guide IC patients in the right direction and to make the right choices.

Julie, who was diagnosed with IC in 1998, is a registered dietitian with a Master's Degree in Health Communications from Michigan State University. She currently works as a wellness educator and speaker, and offers more than 25 years of experience educating, entertaining, and motivating her audiences to make healthy lifestyle choices. Author of Confident Choices: Customizing the Interstitial Cystitis Diet, Julie also provides individual counseling and teaches workshops for nutrition professionals and support groups.

To learn more about how to determine your personal food triggers, checkout Julie’s website at http://nutraconsults.com/confidentchoices.html.

In this month’s column, Julie discusses dieting issues, exercise, eating well, and the challenges that people with IC face when

Question:

I would like to find a diet pill or drink to lose some weight, but I am not sure what to take because I have IC. I have joined the gym and have 25 pounds to lose. Are there any supplements that would be ok to use that would not cause an IC flare?

Answer:

One thing that is interesting in people with IC is that they either have excess weight to lose, or they can’t seem to keep weight on. Scientifically, we don’t understand enough about maintaining a normal weight yet to truly help people on both sides of the coin, but we are getting there.

There are many physical, genetic, psychological, and emotional reasons why your choice to eat or not eat. For example, some people can’t physically make themselves eat when they are in a state of stress, and others can’t seem to stop eating. Since having a chronic illness is definitely a stressful situation, it seems plausible that when someone has a chronic illness they might fall back on their natural tendency to either over-eat or under-eat. Add to that a special diet that is often perceived as vague, medications that disturb the brain’s satiety centers, and reduced physical activity, and you have a recipe for difficult weight problems.

That being said, there are many things you can do to help get your weight under control. You have made a great first step in joining a gym. Many trainers and physical therapists are educated in helping people with limited physical conditions, so investing in a few sessions with a professional trainer can be priceless when it comes to regaining some control over your body.

At this time, I am not aware of any diet pill or drink that can help an IC patient lose weight without the potential to make their symptoms worse. On the other hand, there are still plenty of things you can do to control your appetite just using food alone:

1. Drink plenty of water: I know, I know, you drink enough water every day to keep a US Navy battleship afloat, but this is one dieting trick that really works. Water fills you up. Water is critical for proper digestion and metabolism of foods. Water helps flush out all the junk that is left over from using stored fat for calories (which is what weight loss actually is.) And, when a person loses weight, the composition of their urine changes, often increasing IC symptoms. Drinking plenty of water can help dilute the urine so that those effects are minimized.

2. Eat lots of fruits and vegetables: If you are a person who can’t eat many fruits, concentrate on vegetables. Include fresh blueberries on your cereal, in a smoothie, or grab a pear to eat on the way to work. Start each lunch and dinner with a generous green leafy salad topped with a teaspoon of olive oil and herbs. You can also add pear or blueberry juice to the olive oil to make a tasty dressing. Need a snack? Grab some carrots, celery, or sweet pepper strips for a lot of flavor and even more nutrition.

3. Select lean protein: Eggs, chicken, lean beef, lean pork, fish, and low-fat dairy not only provide essential proteins, but provide a feeling of fullness sooner than other foods like white breads, pastries, or creamy desserts.

4. Fill-up on key “non-animal” proteins: Almonds, cashews, pine nuts, and most legumes (beans, pea pods, alfalfa, etc.) are tolerated by a majority of IC patients. In addition to the protein, nuts provide a generous source of healthy monounsaturated fats, and legumes are a rich source of other vitamins and minerals. (Exceptions seem to be soy and soy containing products which are infamous for irritating an IC bladder.)

5. Choose your carbs wisely: Studies by Dr. Susanna Holt from the University of Sydney in Australia demonstrated the satiety effects of various foods. In addition to higher protein foods and produce, the studies confirm that all carbohydrates are not the same. Throw out the idea that “white foods are bad” and concentrate more on the “whole food” idea. In fact, the food with the highest level of hunger satisfaction was a whole baked potato – with three times the satiety of a plain piece of white bread! Other high carbohydrate foods that helped people feel fuller longer were brown rice, whole grain pastas, oatmeal, bran cereals, and popcorn.

Mentally, the biggest challenge is to transform your thoughts from “losing weight” to “gaining health.” All of the foods mentioned above are packed with essential nutrients that can help you maintain good health, despite the fact you have a fragile bladder. By adopting healthy habits – moderate exercise, nutritious foods, healthy sleeping habits, and stress management – into your lifestyle, you can go a long way to healing your whole body, including managing bladder symptoms.

Thanks to everyone who has sent questions! To address as many questions as possible, Julie and the ICA condense and combine questions. So, even if you don’t see your exact question posted be assured that it has been sent to Julie and the answer is incorporated into her column. Thank you!

 

3.2 URG101 News

Urigen Pharmaceuticals, a specialty pharmaceutical company dedicated to the development and commercialization of therapeutic products for urological disorders, announced that it has positive, statistically significant results for its new IC treatment. Called URG101, this bladder instillation (requires catheterization) consists of alkalinized lidocaine (an anesthetic) and heparin (thought to help to repair/soothe the bladder lining). Also, on April 25, Urigen announced that the US Patient and Trademark Office issued a notice of allowance for claims for the first patent application for URG101.

If the ingredients in URG101 sound familiar to you it may be because these components have been mixed together to form bladder instillations for many years. Urigen’s URG101 combines these two active ingredients in a premixed formula, making it more convenient for IC health providers.

Urigen launched its study of URG101 in 2005. Results have been so promising that in April the company announced the early closure of the URG101 study.

"These positive clinical trial results replicate and extend my earlier work on URG101. Furthermore, it is exciting to me that these are among the best results that have been obtained in a multi-center trial for PBS/IC. It is important to bear in mind that intravesical therapy is used throughout the country to treat PBS/IC and Urigen is working to standardize this therapy." commented C. Lowell Parsons, MD, Urigen's Scientific Founder.

To read an article about patients’ experiences with URG101featured in the April 8, 2008 edition of EVLiving (www.EVLiving.com), please click here.

To view more information about URG101 on Urigen’s website, please click here.

 

3.3 ICA Call to Action!

Overlapping Conditions Meeting

There is currently much conversation about the phenomenon of overlapping conditions, or individuals suffering from multiple chronic diseases and conditions. The NIDDK’s Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network exemplifies the interest in this conundrum.

On March 31, 2008, the leaders of nine patient advocacy groups representing significant numbers of people with overlapping conditions met to discuss the possibility of joining forces—that is, collaborating on the fight for more research dollars and unifying patient advocacy efforts. The represented groups, in alphabetical order, included The:

• Anxiety Disorders Association of America
• Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America
• Endometriosis Association
• International Foundation for Functional Gastrointestinal Disorders
• Interstitial Cystitis Association
• National Fibromyalgia Association
• National Sleep Foundation
• National Vulvodynia Association
• TMJ Association

Discussions focused on common challenges and the potential value of forming a coalition to jointly raise awareness about comorbid conditions, advocate for research dollars and patient rights, and work to educate patients, healthcare providers, and the public about the phenomenon of overlapping conditions.

Action steps from the meeting included each organization gathering feedback from their constituents on forming the coalition, providing input regarding the potential scope and mission of the coalition, and offering recommendations on initial efforts.

Please provide your thoughts on this initiative to ICA Executive Director, Barbara Gordon at bgordon@ichelp.org.

From the ICA Mailroom:

I just found your Website today on AOL search and I thank you so much for all this useful information. I was feeling like a freak for a couple of months with this pain and no answer for it! Now, I feel normal. - Wendy F. 

  4.0 The Latest IC Research Highlights

Finding Common Threads in the IC Story
Peters KM, Carrico DJ, Diokno AC. Characterization of a clinical cohort of 87 women with interstitial cystitis/painful bladder syndrome. Urology. 2008 Apr;71(4):634-40.

What are the common threads in the IC story? Clinicians who care for 87 women with IC at a Michigan hospital’s referral center for pelvic health gathered statistics from the patients’ histories, completed questionnaires, and performed patient examinations.

The authors noted that the patients’ unrelieved chronic pain, frequency, and urgency are “in desperate need of care.”

• Most women had experienced constant pain for five or more years, nearly all (94 percent) had pain in the pelvic floor muscle known as the levator, and more than half had vulvar pain.
• Three quarters had a history of miscarriage, stillbirth, or abortion. Each woman had, on average, four pelvic surgeries, and nearly half had hysterectomies, two-thirds of which were done before the IC/PBS diagnosis.
• Eighty percent of premenopausal women had pain levels averaging 4 out of 10 at ovulation and after their period, with an increase to more than 5 out of 10 before and during their period.
• More than half reported a history of abuse, often in more than one life stage. As many as 12 percent of women had previous chlamydia infections, which was higher than the national average.
• Other common conditions were pelvic pain (93 percent), allergies (86 percent), and sexual dysfunction (72 percent).

To help these women, researchers need to continue to search for the causes of IC/PBS and ways to prevent and treat it effectively. These clinicians suggested that care should include a number of approaches, including physical therapy, oral medications and bladder instillations, neuromodulation, and cognitive-behavioral therapy.

Cyclosporine Takes Down Symptoms, Marker Levels
Sairanen J, Hotakainen K, Tammela TL, Stenman UH, Ruutu M. Urinary epidermal growth factor and interleukin-6 levels in patients with painful bladder syndrome/interstitial cystitis treated with cyclosporine or pentosan polysulfate sodium. Urology. 2008 Apr;71(4):630-3.

Now published in a journal, you may recall our earlier report on this study (evaluating treatment with the immunosuppressant cyclosporine for IC). An article was included in the ICA research summaries from the 2007 American Urological Association meeting (http://www.ichelp.org/Portals/0/AUA/2007AUAAnnualMeetingAbstracts.pdf).

The investigation pitted cyclosporine against pentosan polysulfate (Elmiron). Patients were considered to be responders if they said they were much better or cured, which 72 percent of the cyclosporine patients said, compared with 16 percent of the Elmiron patients. Levels of epidermal growth factor (EGF) in urine went down significantly in the patients who took cyclosporine but not in patients who took Elmiron. Levels of a marker of inflammation, interleukin 6 (IL-6), didn’t change significantly with either treatment in the patients overall, but levels did go down with successful cyclosporine treatment in patients older than 52, in patients who had higher starting levels of IL-6, and patients who had worse disease.

Six Percent of Women, Three Percent of Men Have CPPS Symptoms
Marszalek M, Wehrberger C, Temml C, Ponholzer A, Berger I, Madersbacher S. Chronic Pelvic Pain and Lower Urinary Tract Symptoms in Both Sexes: Analysis of 2749 Participants of an Urban Health Screening Project. Eur Urol. 2008 Apr 1 [Epub ahead of print]

This study looked at pelvic pain in a large group of men (1,768) and women (981) who volunteered for a health examination at a clinic in Vienna, Austria. The participants completed detailed questionnaires. One was the National Institutes of Health Chronic Prostatitis Symptom Index (NIH-CPSI) or a female version of it. Another was the International Prostate Symptom Score (IPSS), often used for evaluating lower urinary tract symptoms in men who may have benign prostatic hyperplasia.

On the NIH-CPSI, the women’s mean score was about 7 and the men’s about 4 (out of a total of 31). That score increased with age in men but not in women. The prevalence of symptoms suggesting chronic pelvic pain syndrome (CPPS) was about six percent in women and three percent in men and was higher in women before menopause. Until age 50, the women’s NIH-CPSI pain score was higher than the men’s. Up to age 60, women had more bladder storage symptoms than men, and men after age 60 had more voiding symptoms than women.

The researchers said that the preponderance of symptoms in women throws doubt on the role of the prostate itself in CPPS in men and suggests that other processes are responsible.

Clinicians Treating Pelvic Congestion See Bladder Damage Connection
A differentiated approach to management of small-pelvis varicosis in women. [Article in Russian] Angiol Sosud Khir. 2007;13(3):79-84.

These Russian clinicians treated 32 women with small-pelvis varicose veins—otherwise known as pelvic congestion syndrome—and pelvic pain. Some women also had painful or difficult urination, pain with intercourse, pain after prolonged sitting or standing or physical activity, or painful, excessive menstruation.

Eighteen of the women were treated with drugs and supplements that help reduce varicose veins, medications that improve circulation, drugs that influence enzymes, and physical therapy. The other 14 with more severe cases underwent procedures to block the veins.

After two to three months, pelvic pain went away in 23 patients (72 percent) and went down in 5 (16 percent). Four women (12 percent) did not have pain go away. Four years after treatment, 27 women had no problems with urination. Two to two and a half years later, five women had worsened chronic cystitis, and two patients had two or three episodes a year of frequent, painful urination. In autopsy studies of other women, the researchers found evidence of pelvic congestion occurring with bladder inflammation.

Findings suggested that prolonged pelvic congestion might lead to some inflammatory process in the bladder wall.

Posterior Tibial Nerve Stimulation Eases Some IC Symptoms But Not Pain
Zhao J, Bai J, Zhou Y, Qi G, Du L. Posterior Tibial Nerve Stimulation Twice a Week in Patients with Interstitial Cystitis. Urology. 2008 Mar 25 [Epub ahead of print]

In this Chinese study of posterior tibial nerve stimulation, 18 female patients (who had bladder or perineal pain, urinary frequency, and urgency) got 10 semi-weekly, 30-minute treatments. The patients didn’t report statistically significant improvements in pain but did in nighttime bladder volume, in scores on the O’Leary-Sant Symptoms and Problem Indexes, and in health status.

The eight patients who said they thought the treatment had some effect had better improvements in bladder volume than the 10 patients who said the treatment had no effect.

IC Patients Don’t Need More Stimulator Reprogramming than Others
Burks FN, Diokno AC, Lajiness MJ, Ibrahim IA, Peters KM. Sacral neuromodulation reprogramming: is it an office burden? Int Urogynecol J Pelvic Floor Dysfunct. 2008 Apr 5 [Epub ahead of print]

Of 47 patients who had sacral neuromodulators implanted from November 2002 through December 2005, about 48 percent had IC. Overall, the patients made 239 programming visits, averaging two reprogramming visits a year. There was no relationship between number of times the stimulators were reprogrammed and the patients’ age, sex, reason for implantation, or diagnosis.

Findings demonstrate, according to the authors, that the number of times stimulators need to be reprogrammed

• Is relatively small
• Can be done during routine visits
• Is the same for IC patients as for other patients.

Easier Mast Cell Counting Method Works as Well as Old
Larsen MS, Mortensen S, Nordling J, Horn T. Quantifying mast cells in bladder pain syndrome by immunohistochemical analysis. BJU Int. 2008 Apr 2 [Epub ahead of print]

Some researchers and clinicians use the number of mast cells in bladder muscle to help choose therapy. The traditional counting method is cumbersome, however. These researchers tested a less complicated method that uses an antibody staining of smaller slices of muscle.

The new and old methods for mast cell counting showed very similar results.

Two Types of Receptors Play Role in IC
Kageyama A, Fujino T, Taki Y, Kato Y, Nozawa Y, Ito Y, Yamada S. Alteration of muscarinic and purinergic receptors in urinary bladder of rats with cyclophosphamide-induced interstitial cystitis. Neurosci Lett. 2008 Mar 5 [Epub ahead of print]

This basic research showed that bladder irritation affected two types of receptors, muscarinic receptors and purinergic receptors, decreasing the number of sites where activating compounds bind to them.

The muscarinic receptors are activated by overactive bladder drugs, known as antimuscarinics. Some purinergic receptors are activated by ATP, which is thought to play a role in transmitting pain signals in the bladder. The research adds more evidence that these receptors play a role in the urinary dysfunction of IC.

 

 

Your support is essential for our future ability to serve the thousands of people with IC struggling daily. Every day, people with IC tell us that the ICA is their lifeline -- often their only place to turn for critically needed support and information. The ICA needs your help to continue this momentum into 2008 and beyond. To make your donation right now, please click here. or call 1-800-HELP ICA! The Interstitial Cystitis Association is an independent, registered nonprofit organization that relies upon private donations to fund its programs (including its own research program), services, and distribution of educational materials. Your contributions are tax-deductible to the fullest extent allowed by law.

ICA Resources!

Pilates DVD!

New Dawn Pilates Vol. 1

Finally, a Pilates exercise DVD created especially for those suffering with chronic pelvic pain! This is a viewer-customizable, daily workout plan that can be tailored to each individual's different exercise and pain levels.

VIPIL08

Member Price: $27.99

Non Member price: $29.99

CLICK HERE TO ORDER NOW!

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New Forum Transcripts!
2007 ICA Forum Transcripts Now Available

Los Angeles Regional IC Forum Transcript

IC: The Basics and Beyond, presented by Robert Moldwin, MD

20 pages of state-of-the-art IC information

Dr. Moldwin is Associate Professor of Clinical Urology and Director of the Urological Pelvic Pain Center at the Smith Institute for Urology, Long Island Jewish Medical Center (LIJMC), in New Hyde Park, NY. A member of the ICA’s Medical Advisory Board for many years, he wrote the best-selling patient-oriented book entitled The Interstitial Cystitis Survival Guide (New Harbinger Publications), which is available for purchase through the ICA.

TRLA07

Member Price: $10.00

Non Member Price: $15.00

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Detroit Regional IC Forum Transcript

IC: Where Are We Now? Where Are We Going? Presented by David Burks, MD, and Two Complementary Therapies for IC/PBS: Posterior Tibial Nerve Stimulation and Guided Imagery, presented by Donna Carrico, RN, CNP, MS

28 pages of IC information from TWO Detroit-area IC specialists

A member of the ICA’s Medical Advisory Board, David Burks, MD, is also on the Board of Governors of the Henry Ford Medical Group and has a very busy voiding dysfunction practice. Donna J. Carrico, RN, CNP, MS, is the Program Coordinator and a health care provider with the WISH Program (Beaumont Women’s Initiative for Pelvic Pain and Sexual Health) in Detroit. She has 25 years of experience in all areas of women’s health.

TRDET07

Member Price: $15.00

Non-Member Price: $22.50

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ICA Regional Forum / Bethesda Two-Disk DVD Set!

This is a more than two-hour, two-disk detailed presentation on the latest IC treatments and pain management techniques featuring renowned IC experts and ICA Medical Advisory Board members Robert Moldwin, MD, and Daniel Brookoff, MD, PhD. Taped in the fall of 2006.

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Because You Care: Being Your Own Best Advocate

Living with IC and related conditions can be a challenge. This new booklet in our Because you Care series is designed to help people with IC meet the challenges of chronic illness and find validation, comfort, and relief. We have found that it is very helpful for people with IC to become actively involved in the management of their condition and to be strong advocates for themselves. After all, no one knows as well as you do what it is like to BE you!

Topics covered include medication issues, employment issues, educational issues, insurance issues, disability issues, and three chapters focusing on navigating daily challenges in your own life.

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The Many Faces of IC—People Living with Interstitial Cystitis: Their Stories

The ICA has brought together a collection of some of our most popular and inspiring patient stories that we have had the privilege of publishing over the past several years.

This book contains 100-plus pages of inspirational and moving profiles of people living with IC. The Many Faces of IC includes portraits of men, women, and children from a multitude of cultural, ethnic, and philosophical backgrounds.

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Because You Care: Exploring the Unique Intimacy Issues of People with Interstitial Cystitis

Another first for the IC world from the ICA— a booklet about sexual intimacy issues and challenges written from the patient's perspective!

This one-of-a-kind booklet is written especially for people with IC and their intimate partners, offering insight into how IC affects sexuality, as well as successful coping strategies for achieving and maintaining rewarding intimate relationships while living with IC.

The 45-page Because You Care booklet focuses on the following challenges of sexual intimacy and IC: physical, psychological, emotional, social, spiritual, cultural, and other special concerns, such as medications and the concerns of men who suffer from IC.

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IC: Current Concepts—Part Two of the ICA's Video Series

This video presentation was recorded at the ICA's University of Maryland Regional IC Forum that took place at the Hyatt Regency in Arlington, VA, in September 2005. The keynote speaker was 2003 National Book Award winner, Carlos Eire, PhD, a Yale University professor who is an IC sufferer. Featured presenters included clinicians and researchers from the University of Maryland: Toby Chai, MD; Susan Keay, MD, PhD; and John Warren, MD. ICA Founder and President, Vicki Ratner, MD, moderated the event.

The most current IC research is explained by the researchers themselves. IC: Current Concepts is designed for both IC patients and healthcare providers. The presentation is available in both DVD and VHS formats.

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ALSO AVAILABLE: For those of you who prefer reading IC presentations, we have published a written transcript of IC: Current Concepts.

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Our Pocket Guide Series Continues!

IC: Expert Opinions, Volume II

With IC: Expert Opinions, Volume II, we have assembled some of the top experts in the field of IC to explore specific topics and special concerns that people with IC often ask about. This is the fourth addition to our Pocket Guide series. Physicians included in Expert Opinions, Volume II: Robert Evans, MD; Christopher Payne, MD; Susan Keay, MD; John Warren, MD; and Kristene Whitmore, MD.

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5.0 Upcoming Conferences

ACOG Scientific Meeting May 3-7, 2008 New Orleans, LA http://www.acog.org/acm/
American Pain Society May 8-10 2008 27th Annual Scientific Meeting Tampa, FL http://www.ampainsoc.org/meeting Visit the ICA at Booth 926!
The National Center for Research Resources (NCRR) and the Association for Prevention Teaching and Research (APTR) May 9, 2008 "Accelerating the Dissemination and Translation of Clinical Research into Practice" 8 am to 4:35 pm on the NIH campus NCRR has announced it will webcast this workshop for those unable to attend in person. The workshop is the first in a series to discuss and share best practices and ways in which researchers can partner with community health care providers to translate clinical research into practice. The workshop is free and open to the public. http://www.aptrweb.org/workshops http://videocast.nih.gov (currently listed in upcoming events listing; the live link will be available on May 9)
AUA Annual Meeting May 17-22, 2008 Orlando, FL http://www.aua2008.org/
AAPA Annual Conference May 24-29, 2008 San Antonio, TX http://www.aapa.org/annual-conf/sanan08/index.php
The Fifth Scientific Meeting of the TMJ Association June 1-3, 2008 Can Studies of Comorbidities with TMJDs (temporomandibular joint and muscle disorders) Reveal Common Mechanisms of Disease? Federation of American Societies for Experimental Biology Bethesda, Maryland http://www.tmj.org/2008sciencemtg.asp
NIDDK June Symposium: Defining the Pelvic Pain Syndromes June 5-6, 2008 DoubleTree Hotel and Executive Meeting Center Bethesda, MD http://www3.niddk.nih.gov/fund/other/UrologicPainSynd/index.htm

  6.0 Products That Can Help YOU Today!

CystoProtek: A patent-protected natural oral dietary supplement in softgel capsule form, has been clinically demonstrated to relieve symptoms associated with interstitial cystitis. The anti-inflammatory properties of the chondroitin sulfate, quercetin and rutin in CystoProtek’s unique natural formula reduce bladder damage and pain, while its glucosamine sulfate, chondroitin sulfate and hyaluronate sodium help replenish the damaged glycosaminoglycan (GAG) protective layer in the bladder.

CystoProtek’s beneficial effects in interstitial cystitis are believed to be due to this dual action. In two clinical studies, CystoProtek was well tolerated by patients and reported to be effective in reducing the pain and improving overall symptoms in many women with interstitial cystitis. To find out more about CystoProtek please visit http://www.cysto-protek.com/ or call 888-317-0001.

 

Desert Harvest Aloe Vera: Aloe vera is a powerful anti-inflammatory and pain reliever. Desert Harvest makes a very concentrated form of aloe vera just for IC patients. A small clinical trial of Desert Harvest whole-leaf aloe vera capsules showed significant reduction in the symptoms of IC. Desert Harvest Aloe Vera’s active ingredient is a polysaccharide, which researchers believe may form an artificial GAG layer in the bladder.

For more information and a free sample please visit www.desertharvest.com or call 1-800-222-3901.

 

LoFric Catheters: Astra Tech, Inc. is the maker of the LoFric hydrophilic catheters and kits for intermittent catheterization. LoFric is the only catheter in the world proven to reduce the risk of both UTIs and long-term complications. 100% latex-free. To find out more please visit http://www.lofric.com/.

 

Prelief: AkPharma, Inc. makes Prelief, a dietary supplement containing calcium glycerophosphate, has been shown to help reduce bladder pain and urinary urgency when used with acidic foods and beverages.

For more information about Prelief, please visit www.prelief.com or call (800) 994-4711.

 

Minute Maid Low Acid Orange Juice: This product can be found in the frozen food section of most supermarkets, alongside Minute Maid’s other juice products. Although it is reduced in acid, some IC patients may find that they need to dilute the concentrate with more water and/or add some Prelief to lessen the possibility of flaring IC symptoms.

To find out more please visit www.minutemaid.com.

 

Natural Touch Kaffree Roma: Roma is a multi-grain beverage with chicory that has a full-bodied taste similar to coffee, but without caffeine or tannic acids. It can be used as a coffee or hot cocoa substitute. Roma is distributed by Worthington Foods, a division of Kellogg's, and can be found in many major supermarkets.

To find out more, please click here:

http://www.morningstarfarms.com/products/morningstar/catalog/profiles/naturaltouch/kaffreeroma7.html

Disclaimer: The ICA does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication. © 2008 The Interstitial Cystitis Association. All Rights Reserved.