CAFÉ ICA, VOLUME 7, NUMBER 4, May 2007

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

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 Patient Advocacy Spells Success for the 2007 ICA Capitol Hill Walk
1.2 Urologic Diseases Cost Americans $11B A Year
1.3 IC Name Change Issue Makes the Cover of Urology Times
1.4 NVA Requests Research Proposals

2. Voices in the IC Community
2.1 A Message from Griffin P. Rodgers, MD, MACP, Director, NIDDK
2.2 Longtime ICA Board Member Retires
2.3 ICA Board of Directors Gains Dedicated Advocate
2.4 Moving Account of Vulvodynia Featured in Recent British Newspaper

3. News YOU Can Use!
3.1 2007 AUA Meeting Shows IC is on the Map
3.2 New IC Book for Couples Now Available!
3.3 ICA Call to Action!

4. The Latest IC Research Highlights

5. Products That Can Help YOU Today!

From the ICA Mailroom:

I am so glad there is the ICA! We all need help with these incurable diseases, and it does bring solace to know someone is working for you and the future. - Kathy

1. Hot Off the Press

1.1 Advancing Our Mission During 2007's First Quarter

The ICA's 7th Annual Capitol Hill Walk took place during the week of June 3rd. People with IC and their loved ones, ICA Board members, and ICA staff traveled from around the country to Washington, DC, to attend this always successful and enlightening annual event that has become a tradition at the ICA. Participants met personally with their Congressional Representatives and/or staff members to emphasize the importance of government-funded IC research and awareness efforts.

We will be covering this year's Walk in more detail in the next issue of Café ICA. For now, we wanted to share some photos of the event with you:

ICA Government Affairs Consultant	Joe and Angela Daczko of Ohio.
ICA Board member Minna Schrag of New York, ICA Founder and President Vicki Ratner, MD.	Karen Hixson, PhD and her husband Wes Hixson of North Carolina.
Diana Dunn, PhD of Vermont and Susan Presberg-Greene, MD, of New York. Dr. Presberg-Greene was an ICA Board member.	Sharon and F. Neal Thompson, Virginia. Neal is an ICA Board member.
Connecticut participant Sandy Candler, RN with her husband David.	Pat Pannill of Connecticut.

1.2 Urologic Diseases Cost Americans $11 Billion A Year

Note: As you may know, it can take many years for a patient to get a correct diagnosis of IC. During that time it is common for the patient to be treated for another diagnosis . . . urinary tract infection (UTI), which, as you can see from the report below, falls into the very first category on the list of most costly urologic diseases. It would be interesting to know how many of these patients being treated for UTIs actually receive an eventual diagnosis of IC.

It can be expensive and even harmful to mistreat IC as if it were a UTI by using endless courses of antibiotics for a disease that has not been shown to be infectious or responsive to antibiotics. Antibiotics are expensive; some portion of the 3.5 billion dollars spent on prescriptions for antibiotics annually mentioned in this press release is most likely being spent inappropriately to treat undiagnosed IC.

07 May 2007 - NIH Press Release:

Bladder, prostate and other urinary tract diseases cost Americans nearly $11 billion a year, according to a new report from the National Institutes of Health. Medicare's share exceeded $5.4 billion.

The five most expensive urologic problems--accounting for $9.1 billion--are, in descending order, urinary tract infections, kidney stones, prostate and bladder cancers and benign prostate enlargement, according to the authors of Urologic Diseases in America. The report was published online this spring and will be available in print and on CD in early May.

"This research sharply illustrates the immense burden of urologic diseases and the importance of studies to preempt disease processes and develop targeted treatments," said Elias A. Zerhouni, MD, NIH Director.

Five years in the making, Urologic Diseases in America stitches together a patchwork of reliable data, both new and previously published, revealing numbers of people affected, treatment patterns and economic cost.

TOP 10 DISEASES BY COST

Infection (Women & Men)
$3.5 Billion

Kidney Stones
$2.1 Billion

Prostate Cancer
$1.3 Billion

Bladder Cancer
$1.1 Billion

BPH/Prostate Enlargement
$1.1 Billion

Urinary Incontinence
$463.1 Million

Kidney Cancer
$401.4 Million

Erectile Dysfunction
$327.6 Million

Prostatitis
$84.4 Million

Interstitial Cystitis/PBS
$65.9 Million

"The data have broad implications for quality of care and access to care and helps to inform discussions about health care and research needs," said UDA coeditor Mark S. Litwin, MD, MPH, a urologist at the David Geffen School of Medicine and School of Public Health at the University of California, Los Angeles.

Urologic Diseases in America describes more than a dozen diseases of children and adults, among them congenital abnormalities, erectile dysfunction, chronic prostatitis, interstitial cystitis, urinary incontinence and a chapter on sexually transmitted diseases, contributed by the Centers for Disease Control and Prevention. Findings include:

* Medical care for nearly 12.8 million urinary tract infections in women alone costs nearly $2.5 billion annually. Adding the cost for men raises the total to $3.5 billion; Medicare's share was $1.4 billion. Another $96.4 million was spent on 3.3 million prescriptions. More than half of all women will have an infection during their lifetimes. Reporting a trend toward using newer, and more expensive, fluoroquinolones raises concerns about increasing antibiotic resistance said UDA authors. And while only 20 percent of infections are in men, they are more often hospitalized and out of work about twice as long as women.

* While hospitalizations, length of stay and the need for open surgery are declining for kidney stones, medical care still costs $2.1 billion annually, with another $4 million to $14 million spent on prescription drugs. Men are two to three times more likely than women to develop a stone, but more people of all ages and races are getting them: an estimated 5 percent of adults between 1988 and 1994, up from nearly 4 percent between 1976 and 1980. Compared to whites, African Americans and Mexican Americans have a 70 percent and 35 percent lower risk, respectively, of developing a stone.

* Although data for childhood urologic diseases are scarce, urinary problems in children cost at least $75 million dollars a year. Vesicoureteral reflux, the abnormal flow of urine from the bladder up toward the kidneys, affects about 10 percent of all children and makes them prone to urinary tract infections and kidney damage. The cost of hospitalizations for reflux alone rose from $10 million in 1997 to $47 million in 2000; Southern states, defined using US Census Bureau regions, saw the highest rise--56 percent--attributable to a doubling in the number of cases.

"Our biggest challenge was finding reliable data in children," said Christopher Saigal, MD, MPH, Litwin's coeditor at UCLA and RAND Health. "More research is needed in children."

###

Urologic Diseases in America was funded by NIH's National Institute of Diabetes and Digestive and Kidney Diseases and developed by a team of epidemiologists, health economists, statisticians, programmers and urologists.

Learn more about urologic diseases at http://kidney.niddk.nih.gov/ click on statistics to find Urologic Diseases in America. UDA books and CDs may be ordered from the National Kidney and Urologic Diseases Information Clearinghouse at http://www.catalog.niddk.nih.gov/

The NIDDK, a component of the NIH, conducts and supports research in diabetes and other endocrine and metabolic diseases; digestive diseases, nutrition, and obesity; and kidney, urologic and hematologic diseases. For more information about NIDDK and its programs, see http://kidney.niddk.nih.gov/.

The National Institutes of Health (NIH) - The Nation's Medical Research Agency - includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov/.

Contact: Mary Harris
NIH/National Institute of Diabetes and Digestive and Kidney Diseases
Article URL: http://www.medicalnewstoday.com/medicalnews.php?newsid=69618

1.3 IC Name Change Issue Makes the Cover of Urology Times

Medical reporter Penny Allen, who also writes for the ICA, has helped put IC news onto the pages of Urology Times again. The April 1, 2007 edition of Urology Times features a cover story by Penny which takes a comprehensive look at the IC "name change" issue that has been at the forefront of IC news recently. The issue also carries three more articles on the latest IC research presented last October at the 2006 International Symposium: Frontiers in Painful Bladder Syndrome and Interstitial Cystitis, sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases.

To read these articles, please click here:
http://www.urologytimes.com/urologytimes/issue/issueDetail.jsp?id=11586

1.4 NVA Requests Research Proposals

The NVA invites research proposals focusing on the classification, etiology, diagnosis and/or treatment of generalized vulvodynia or vulvar vestibulitis syndrome.

Grants typically range from $15,000 to $25,000. Due to the limited amount of funding, NVA requires confirmation that all funds will be applied to direct research costs, not institutional costs.

If you are interested in applying, please submit a brief letter of intent to Chris Veasley (chris@nva.org) by June 30, 2007 outlining the following:

- Name and professional background of the primary investigator

- Study objective and time frame

- Budget summary (US dollars)

NVA will email you application guidelines following receipt of your 'letter of intent.'

Completed applications are due August 10, 2007.

If you have previously submitted a proposal to NVA, you are invited to re-apply. Applicants do not have to be US residents. NVA welcomes correspondence about potential projects. Please direct any questions to Chris Veasley via email (chris@nva.org) or phone (401-398-0830).

2. Voices in the IC Community

2.1 A Message from Griffin P. Rodgers, MD, MACP, Director, NIDDK Interstitial Cystitis and Painful Bladder Syndrome Research

As the newly appointed NIDDK Director, I want to reaffirm the Institute's commitment to vigorous, multi-pronged research efforts with respect to the many disease areas within the Institute's mission. I appreciate this opportunity to reach out to the community regarding our efforts to understand and combat interstitial cystitis (IC), which is sometimes also called painful bladder syndrome (PBS). PBS/IC is debilitating, difficult to diagnose, and costly, ranking among the top ten urologic diseases in terms of economic costs. The NIDDK supports a broad spectrum of research aimed at better understanding, treating, and possibly preventing PBS/IC.

As I hear from scientists and patients concerned about NIDDK programs, I am asked how the Institute will meet the challenges of the current budget landscape. Clearly, at all levels of our organization, we will remain firmly committed to basic, translational, and clinical research; research training and career development; and the dissemination of health information to improve the lives patients and their families.

Working together, we will build upon the emerging opportunities that are the fruits of past research investments. Through careful planning and analysis, we will meet the challenge of deploying our budgetary resources to sustain research momentum and capitalize on research achievements. In moving research forward, several core principles will guide my leadership of the Institute.

Maintain a Vigorous Investigator-Initiated Research Portfolio: The innovativeness and problem-solving of individual investigators are crucial for research progress. Therefore, the NIDDK will maintain funding of investigator-initiated grants at the highest possible level. Currently, the Institute has a strong portfolio of investigator-initiated research addressing basic questions of bladder physiology and pathophysiology in general and PBS/IC in particular.

Support Pivotal Clinical Studies and Trials: Clinical studies will continue to be an integral component of NIDDK-supported research. Currently, the Institute funds pivotal clinical studies on PBS/IC, including epidemiologic studies, a PBS/IC genetics consortium, and an IC Clinical Research Network. Complementing these studies, we are supporting an effort to test and validate biomarkers for PBS/IC using clinical samples. We are also working to enhance translational research that can propel fundamental discoveries in PBS/IC more quickly toward potential clinical application. We are also maximizing our investments by expanding the investigative community's access to very valuable research resources accrued in our major clinical trials and studies. For example, we are supporting a central repository for data and biologic materials from clinical trials and studies, such as the Interstitial Cystitis Database prospective study.

Preserve a Stable Pool of Talented New Investigators: The ideas and fresh perspectives of new investigators invigorate the research community. Thus, among our efforts we will strive to ensure that new investigators can realize their potential for contributing to biomedical urologic research--the wellspring of PBS/IC research--and that today's generation of young scientists will view research as a viable career. We will foster mentorship of new investigators, and promote special consideration for funding of talented new investigators. We will pursue these efforts in part through our participation in NIH-wide efforts to support new investigators, such as through the NIH Pathway to Independence Program and Loan Repayment Program.

Foster Exceptional Research Training and Mentoring Opportunities: Maintaining an NIDDK-focused pipeline of outstanding investigators is critically important to our research progress, including in PBS/IC and other urologic diseases. We will continue to support significant opportunities at the graduate-student and postdoctoral levels, as well as through research career development awards and undergraduate research educational opportunities. For example, we and the National Cancer Institute support modified award criteria for urologic surgeons seeking early mentored career development awards, in order to accommodate the time required for these physician-scientists to maintain their surgical skills while pursuing urologic research.

Ensure Knowledge Dissemination Through Outreach and Communications: We are continuing efforts to ensure that the science-based knowledge gained from NIDDK-funded research is imparted to health care providers and the public for the direct benefit of patients and their families. These efforts include updated health information about PBS/IC available through the National Kidney and Urologic Diseases Information Clearinghouse. Additionally, information about the burden, treatment patterns, and economic costs of PBS/IC and other urologic diseases is presented in the newly completed compendium, "Urologic Diseases in America."

Importantly, as we plan for the future, we will continue to seek and value external advice from investigators, professional scientific organizations, patient advocates and the public. Key sources of input will continue to be our National Advisory Council; the Interagency Coordinating Committees; strategic planning processes; ad hoc planning groups; and scientific conferences and workshops. Of particular note for PBS/IC is the report of the Bladder Research Progress Review Group, an expert group convened by the Institute that provided key recommendations for research on PBS/IC and a host of other urologic diseases. The NIDDK also sponsors conferences and workshops to facilitate dissemination of research findings and foster planning to advance future research in PBS/IC. A recent symposium drew together PBS/IC investigators from around the world who described progress in understanding PBS/IC and identified questions and challenges in the field, and we are building upon symposium ideas and discussions in our current PBS/IC planning efforts. Stakeholder input from these and other planning processes will provide a useful scientific guidepost as we make resource allocation decisions. Active collaboration with other components of the NIH and other federal agencies will also remain a cornerstone of NIDDK planning efforts.

Ever-increasing knowledge and the advent of new technologies bring new scientific opportunities for alleviating and conquering PBS/IC. Our continuing goal will be to seize and exploit these opportunities to reduce the burden of this disease and improve the public health. To this end, I look forward to working with the NIDDK's many stakeholders for research on PBS/IC.

2.2 Longtime ICA Board Member Retires

With us from the very beginning, ICA Board member Lana Fayman is retiring from the board to become Board Member Emeritus. Her 22 years of dedicated work to improve the lives of IC patients and put the ICA on the map have paid off, and we owe her a huge debt of gratitude.

It was 1984 when this San Diego City Schools teacher got IC. She even recalled the day and the moment. "We'd gone to watch an indoor soccer game, and in the middle of it, I thought, 'Oooo, what's this!?' I suddenly got pain! Terrible pain. I thought it was a bladder infection."

Lana went to see a urologist right away. To this doctor's great credit, he said no, it wasn't a bladder infection and right away suggested that it might be IC. But he said that it wasn't really understood, and he didn't know what could be done to treat it.

Lana went to the University of California, Los Angeles, for tests. There, she found out that IC was being researched right in her hometown by Lowell Parsons, MD, at the University of California, San Diego. She went there and got in on the clinical studies of pentosan polysulfate (Elmiron) that ultimately led to its approval.
Lana proudly sporting her ICA sweatshirt at an ICA event in the 1990s.

It was a double-blind study, so she wasn't sure whether she was getting the real thing or not. After about six months, she said she noticed a difference, although she was still having pain. But then, she got switched to the other pill used in the study, and she started feeling much worse. "This is horrible," she told Dr. Parsons, and begged to be switched back to the other pill. Eventually, her IC seemed to go in remission. She has minor flare-ups today, and can get Elmiron through her insurer to deal with them.

But in 1984, Lana just didn't sit back waiting for treatment to help her. She swung into action. "I asked Dr. Parsons' nurse if she would give out my telephone number to whoever asked about it, and she did. And I got some names and started a mailing list."

At the same time, Vicki Ratner, MD, then in New York City, started organizing patients in the East. Lana and Vicki found each other, joined forces, and began to turn the ICA into the active national advocacy organization that it is today, and Lana has been a member of the Board ever since.

"I'm proud of getting this thing started and seeing it grow and getting the government involved and funding research. I'm just proud of the whole organization and the way it's evolved since its very humble beginnings. It's professional now, with a lot of highly qualified people on the Board. I'm just honored to be in their company."

Just because she is becoming Board Member Emeritus, Lana still won't be sitting back. "We have a heck of a lot of work to do. Look how long it's been-we still don't really have any good answer. There's no cure for the darn thing. But we do have more treatments now than they did then," she said.

She also knows that getting pain controlled remains one of IC patients' biggest challenges. "I am totally supportive of people getting all of the painkillers that they need so they can function. Sometimes I read that, if you're in pain, you should concentrate on something else, and I think, 'What a bunch of bull. There's no way you can ignore the feeling of a hot coal sitting right there where you don't want it to sit.' It just totally blew me away. That's why I was determined to get something going. I just had to."

So Lana will be keeping in touch as well as supporting the ICA financially while she and her husband Mark also enjoy their family. "I'm really having a good time. I've got grandkids now. And I can be with my own kids. So, life is very fulfilling. But that thing, IC, really put its mark on me."

We're just grateful that Lana put her mark on IC and the ICA.

2.3 ICA Board of Directors Gains Dedicated Advocate

Rhonda at the ICA's 2004 Capitol Hill Walk with ICA Patient Advocate Linda Salin. Rhonda gives a big smooch to her son Cameron

Not long after her IC was diagnosed in 1997, Rhonda Garrett dedicated herself to helping other IC patients. She became a patient advocate, led a patient support group, and advocated for IC awareness and research funds on Capitol Hill numerous times. Now, the ICA is pleased to welcome Rhonda to our Board of Directors.

Today, Rhonda lives in Tampa, Florida with her family-husband Tim and their two children, Cameron and April. Rhonda works hard to support patients, raise awareness, and be an advocate on Capitol Hill. Because of her pain and other IC symptoms, Rhonda doesn't hold a job, but she does put her education to work for others like her. She holds a masters degree in counseling psychology, so it's no surprise she led a support group in Kansas City and has served as a patient advocate no matter where she has lived.

Rhonda has taken her advocacy to Washington, DC numerous times. She spoke at congressional briefings on pelvic pain sponsored by the Coalition for Urologic Research and Education (CURE, of which ICA is a member) and the Society for Women's Research. On Capitol Hill Walks, she has met with representatives from Kansas, Maryland, and Florida to ask for their help to fund IC research and awareness efforts. She also presented heartfelt testimony to the FDA about IC patients' need for effective pain control.
Rhonda gives a big smooch to her son Cameron.

Rhonda took her advocacy to the public, too. During an evening news broadcast on Fox 13 Tampa Bay, she spoke about her struggle with IC.

Clearly, Rhonda is dedicated to working for the cure until the job gets done. Her energy, courage, and determination will help carry us there.

2.4 Moving Account of Vulvodynia Featured in Recent British Newspaper

The June 2nd issue of The Times, a British newspaper that circulates to nearly 700,000, contains a substantial, touching piece on vulvodynia. The National Vulvodynia Association extends its appreciation to Ms. Kate Hodal for publicly sharing her experience with vulvodynia and to Dr. David Nunns for his long-standing support of this issue.

You can read the article online by clicking on this link:

http://women.timesonline.co.uk/tol/life_and_style/women/body_and_soul/article1870117.ece

From the ICA Mailroom:

Thanks for listening and for caring. I've read some articles and search the web for tidbits when I can. Your support is appreciated very much. - PD

3. News YOU Can Use!

3.1 2007 AUA Annual Meeting Shows IC Is on the Map

This year's American Urological Association (AUA) annual meeting showed that we're entering a new era for IC in medicine. The focus wasn't just on research, which is as active as ever and may bring about the first new treatment in years for severe IC. This year there were more courses than ever before to help teach urologists how to treat IC and related conditions, and the AUA put IC and ICA Founder and President Vicki Ratner, MD, in the history book of medicine.
Dr. Vicki Ratner is included in the William P. Didusch Center for Urologic History's Women Healers exhibit.

In the History Books
In the exhibit hall, a large central display festooned with pink bunting stood out from the rest. Here, the AUA's William P. Didusch Center for Urologic History honored women healers, with descriptions and photos on the walls and artifacts in displays tracing the history of women in medicine. They have always been there, as a quote a wall from 19th century physician Eliza Flagg Young, MD, reminded viewers: "Every woman is born a doctor. Men have to study to become one."

But formal recognition and acceptance have not always been there. Women healers and physicians were prominent in ancient times, but their role diminished, reaching a terrible low as "witch" burning began during the Inquisition. After the Renaissance, women didn't break into formal medicine again until the 18th century in Europe and the 19th century in the United States when Elizabeth Blackwell became the first American woman to be granted a medical degree in 1849.
Prolific IC researcher from the University of Maryland School of Medicine Susan Keay, MD, PhD receives the 2007 ICA Advocate of the Year award from Dr. Vicki Ratner.

In urology, women are still pioneers, and the AUA recognized eight MDs and PhDs who work in the field today. Only one, Dr. Ratner, is not a urologist or a urology researcher. She was recognized for her accomplishments in raising awareness of IC, stimulating and guiding research, and supporting patients. Two other honorees are also IC heroines: pioneer IC clinician and researcher Kristene Whitmore, MD, who won the ICA Advocate of the Year Award in 2005, and research advocate Monica Liebert, PhD, who won the award in 2006.

Research Brings New Therapies, Ideas
IC researchers, some well known to the IC community and some new, presented their studies in a poster session devoted to IC, but many more studies on IC's mechanisms and potential treatments were presented in sessions on basic research, drug development, and female urology.

Immunosuppressant Research
Among the most hopeful were three studies of the immunosuppressant cyclosporine for patients with severe IC. Two of these studies also looked at urine markers that might show whether the treatment is working or who might benefit from it. All the studies included patients with severe IC who weren't helped by other treatments. In the study from Brazil, patients had their average O'Leary Sant symptom scores drop from an average of 36 to 15 after a year of therapy. This immunosuppressant carries risks, such as susceptibility to infection, liver dysfunction, and hypercholesterolemia, but the researchers didn't see any abnormalities in these patients. That wasn't the case in another cyclosporine study from Finland, where some patients had severe side effects, but most patients also had remarkable improvement, compared with a small proportion of patients who took pentosan polysulfate (Elmiron). In a Swedish study, the researchers measured levels of nitric oxide (NO), well known as a marker of inflammation, in IC patients' bladders. The patients got cyclosporine in lower and lower doses, and the levels of NO increased some, only to shoot up, along with symptoms, when the drug was stopped. The average drop in these patients' O'Leary Sant scores was a very satisfying 17 points. It may be that the low doses used later in this study could still help patients while keeping the side effects to a minimum. We should hear more in the future from these researchers who are continuing their research as well as from the Interstitial Cystitis Collaborative Research Network, which is now studying another immunosuppressive drug, mycophenolate mofetil (CellCept), for IC.

These and another marker study may revive the theory that IC has an autoimmune or immune system foundation. Researchers at Harvard Medical School found that IC patients had greater autoantibody reactions to 37 antigens compared with controls, with 25 of them showing up very often and looking like candidates for biomarkers of IC.

Botox
Two studies of botulinum toxin A (Botox) injections into the bladder of IC patients and another in patients with radiation and chemical cystitis also looked hopeful. Botox gave great relief from pain and very good improvements in urinary symptoms lasting for months. The good results in IC patients contrast with some of the previous studies of Botox for IC, and it's not clear what might have made the difference, although researchers speculated that the technique, where the injections were made, or the number of injections might be the key.

Epidemiologic Studies
Epidemiologic studies are confirming some things we have known about IC, but the studies are also changing our thinking about who has it. One of these studies confirmed that, indeed, IC doesn't travel alone, and patients often have other problems such as irritable bowel syndrome and fibromyalgia. Another study showed that symptoms of IC-pain, urgency, and frequency, are more common in men than urologists have been aware of.

Again, clinical researchers warned physicians to be thorough when they have patients who may have IC. In 261 "IC" patients referred to the University of Missouri by urologists and other healthcare providers, the researchers found bladder, vulvar, and cervical cancers in 6 patients, and some patients had kidney stones. While the percentage of other problems is low, it shows that sometimes doctors jump too quickly to the IC conclusion. It's important for physicians to consider all the possibilities and examine patients thoroughly.

Possible Causes/Treatments
Physiologic, pharmacologic, and genetic research at the AUA meeting this year hints at some new approaches to treating IC and progress in uncovering IC's cause or causes. A prostaglandin-like compound seems to keep bladder from developing cystitis prompted by chemical irritation, and that fits with previous research indicating that nonsteroidal anti-inflammatory drugs (NSAIDs), which inhibit the prostaglandins, may actually do IC bladders more harm than good. Now, it seems, an opposite kind of drug might help. Certain catechins extracted from green tea were found to protect cultured bladder cells from an inflammation-causing chemical, so they might be useful in IC. Whole green tea extract did not have this effect, however, and is known to cause IC symptoms to flare. Researchers continue to look at calcium channel blockers, which are relatives of the anesthetic lidocaine, with an eye to developing very targeted ones to treat bladder pain. Melatonin may actually enlarge the bladder and help with nocturia.

Proteomics, which studies the different proteins genes express, has shown that chronic prostatitis patients have protein signatures that might serve as markers, and one of them may break down one of the body's natural painkillers. A drug in development may counteract that and help IC patients, too.

Research on processes in IC at the cellular level continue. A protein called p53, well known for suppressing cancerous growth, has been found to have a connection with antiproliferative factor (APF). APF increases levels of p53, and when cells are forced to produce more p53, the protein acts much like APF. APF may be a "checkpoint controller" for p53. The connection helps point to the p53 target genes as the ones involved in IC. Research is also moving closer to showing how IC patients' bladder lining may be "leaky." Bladder lining cells contain proteins called claudins that may be involved in keeping the bladder surface tightly locked, but cells from IC patients don't make as much claudins as normal cells do.

Courses for Clinicians Popular
The AUA provided three courses specifically about IC for doctors who wanted to learn more about IC treatment. That's a record number, with a record number of participants. Even more courses helped attendees learn about treating IC and related problems.

One team included three ICA Medical Advisory Board members, urologists Robert Moldwin, MD, from Long Island Jewish Medical Center, New Hyde Park, New York, Ragi Doggweiler, MD, from the University of Tennessee, Knoxville, and gynecologist Fred Howard, MD, from the University of Rochester, Rochester, New York. Their course gave attendees a practical approach to treatment of chronic pelvic pain, including IC, pelvic floor dysfunction, pelvic congestion, vulvodynia, endometriosis, irritable bowel syndrome, and chronic prostatitis/chronic pelvic pain syndrome in men. They emphasized that treatment needs to be interdisciplinary and may need to include urologists, gynecologists, physical therapists, psychologists, pain specialists, nutritionists, rheumatologists, and acupuncturists. Dr. Moldwin's approach to IC includes using anesthetics in the bladder rather than potassium to help make the diagnosis, using a laser to treat Hunner's ulcers, and other practical approaches. Dr. Howard helped urologists understand when the pain may be gynecologic, how endometriosis and pelvic congestion are treated, and how to manage pain medically, including how to manage opioids and use neuropathic pain drugs. Dr. Doggweiler spoke about pelvic floor muscle dysfunction and neuropathic pain. Calling myofascial and trigger point physical therapy the "best kept secret in pain management," she outlined these treatments and others that emphasize the mind-body connection, including deep relaxation.

Another course was taught by two other Medical Advisory Board members, Philip Hanno, MD, from the University of Pennsylvania, Philadelphia, and David Burks, MD, from the Henry Ford Health System, Detroit. Their class was both a primer and an update. They spoke about diagnosis, pointing out that the potassium sensitivity test is not sensitive and specific enough for diagnosis and that glomerulations are also not diagnostic. Doctors can suspect IC when patients have pain, frequency, and urgency and don't have evidence of infection and other urologic and gynecologic problems. They also outlined all the current therapies as well ones that are being tested in clinical trials, including CellCept, physical therapy, a leukotriene antagonist that is also an antiasthma drug, an IgE inhibitor used for asthma in Japan, Botox, an alpha agonist (in the family of drugs for treating blood pressure and prostate enlargement), intravesical chondroitin, a cannabinoid, and an anesthetic cocktail.

John Forrest, MD, and nurse Saundra Seidel taught a course that helped urologists learn not only how to diagnose and treat IC but also how urologists can organize IC treatment in their practices. Dr. Forrest made the important point that urologists don't have to shy away from treating IC patients because it's not cost effective. IC treatment is an important and positive part of his business because of the way he works with Ms. Seidel and the nursing staff. IC patients who need help with flares, need to get their urine checked for UTIs, or anything else, can walk into the clinic any weekday from 8 AM to 5 PM and get help, and can even come in on the weekends in emergencies.

IC was an important part of a course on female urology, led by David Staskin, MD, from Weill-Cornell Medical College in New York City where Toby Chai, MD, from the University of Maryland, Baltimore, and Kenneth Peters, MD, from William Beaumont Hospital in Royal Oak, Michigan, spoke about the different and sometimes competing theories about where the disease IC actually is based-in the bladder, in the nervous system, in the pelvic floor, or all of those. Susan Kellog-Spadt, PhD, who works with Kristene Whitmore, MD, at the Pelvic and Sexual Health Institute in Philadelphia, Pennsylvania and is Director of Sexual Medicine there was a faculty member in a course on sexual dysfunction. She lectured on sexual pain, especially vulvodynia and vulvar vestibulitis and their treatment, including pelvic floor muscle therapy and innovative medications in creams and injections, neuropathic pain drugs, nerve blocks, and more. Her participation in this course helped emphasize to urologists that serious pelvic pain problems contribute to sexual dysfunction and deserve treatment so that women with pelvic pain can reclaim their sexual selves.

Lots to Look Forward To
IC patients can take heart from this AUA annual meeting. It showed us that soon, patients will have access to new therapies and know that even more are on the way. In addition, patients will have more well-trained doctors to go to who not only know IC is real but also know more about how to help than they did just one year ago.

Watch for the next issue of ICA Update, which will tell you more in detail about this year's AUA meeting and the research presented there.

3.2 New IC Book for Couples Now Available!

PLEASE UNDERSTAND
The Interstitial Cystitis Guide For Partners

By Gaye Grissom Sandler, Molly Hanna Glidden, Andrew B. Sandler, Ph.D., William C. Glidden

Authors and support group leaders Gaye Sandler and Molly Glidden, have been friends and IC activists for 15 years. These two leaders found a great way to help lessen the stigma attached to an invisible disease such as IC.

In this unique and compassionately written book you will find the heartfelt stories of IC partners, as well as a candid look into one couple's experience living with IC.

Please Understand answers the questions that many of us are not comfortable asking. It is written for IC couples who wish to achieve and maintain successful loving and intimate relationships.

This easy-to-read book is also a good resource for family and friends who are trying to understand the difficult struggles so many IC patients face.

Book orders can be placed by e-mail at:
Icersmeet@aol.com

3.3 ICA Call to Action!

A Media Alert from the American Pain Foundation:

Newsweek's "The New War on Pain"

We are very proud to report that the cover story of the June 4th issue of Newsweek features "The Changing Science of Pain," [http://www.msnbc.msn.com/id/18881802/site/newsweek] where the American Pain Foundation's (APF) Executive Director, Will Rowe, and APF Pain Community Advisory Council's (PCAC) Co-Chair, Andrea Cooper, and Dan O'Neal of our Power Over Pain Action Network (POPAN) are quoted.

We know that this coverage will raise public awareness of pain issues. Journalists work hard; praise for their work can go a long way. Your feedback will encourage Newsweek to feature more stories about pain treatment, bringing pain to the forefront.

Please take a few moments to read this comprehensive article and let the authors know how important this issue is to you. After you've read the article, use the following link to email Newsweek (scroll down to the bottom right-hand side to comment): http://www.msnbc.msn.com/id/3037860/site/newsweek.

A Correction of the Newsweek Story

The Newsweek cover story, "The Changing Science of Pain" (6/4/07), refers to the challenge of treating the chronic pain that over 75 million Americans suffer each day. The article touched briefly on the delicate balance needed to provide relief from chronic pain, while also minimizing the risk of abuse by those who might alter the way it is meant to be taken.

Near the beginning of the article it states that "Patients can still become dependent on a new form of the morphine derivative called Kadian, for instance, but if they crush one of the pills for snorting, its center explodes, releasing a substance that block the euphoric high." Kadian, which is currently on the market, does not contain a substance that blocks the euphoric high.

Currently, the long acting forms of morphine, like Kadian, Avinza and MSContin, do not have a reversal medication (opioid antagonist) included in their formulation as that sentence implies. However, there are other opioid formulations with antagonists or other tamper resistant properties under investigation or clinical trials with pharmaceutical companies like Alpharma (the maker of Kadian), Pain Therapeutics and Purdue Pharma.

Newsweek has notified APF that they will be running a clarification to this effect in next week's issue.

4. The Latest IC Research Highlights

Diet Does Make a Difference
Shorter B, Lesser M, Moldwin RM, Kushner L. Effect of Comestibles on Symptoms of Interstitial Cystitis. J Urol. 2007 May 10; [Epub ahead of print]

This month, the Journal of Urology published the study on diet and IC that Robert Moldwin, MD, presented at the American Urological Association meeting in 2006. This landmark study now confirms what many IC patients have known-that diet makes a difference. The idea had been debated because some patients don't report any difference in symptoms based on what they eat or drink, not all patients have the same items trigger their symptoms, and a study of instillation of solutions of varying acidity in IC patients' bladders didn't show any differences in sensation. But now this team has hard evidence, based on a validated questionnaire, that certain foods and beverages really do make a difference and that many IC patients find the same items troublesome. In fact, having diet make a difference in how they felt was nearly universal in IC patients, with 90% of the 104 patients reporting it. Some 35 items averaged a -1 on a scale of -2 to 2, where the negative scores indicated trouble. Those included caffeinated, carbonated, and alcoholic beverages, certain fruits and juices, artificial sweeteners, and spicy foods. The individual items that scored highest on the trouble scale were coffee, tea, soda, alcoholic beverages, citrus fruits and juices, artificial sweeteners, and hot peppers. Patients who said food and beverages did make a differences tended to score worse on the O'Leary-Sant IC Symptom and Problem Index and/or the pelvic pain/urgency/frequency (PUF) questionnaire than those who said diet didn't make a difference.

IC Gets Overlooked as Cause of Sexual Pain
Whitmore K, Siegel JF, Kellogg-Spadt S. Interstitial cystitis/painful bladder syndrome as a cause of sexual pain in women: a diagnosis to consider. J Sex Med. 2007 May;4(3):720-7.

In this journal for healthcare professionals who treat sexual problems, Kristene Whitmore, MD, and her team at Graduate Hospital asked readers to consider IC as a cause of pain with intercourse, called "dyspareunia." IC is often overlooked as a source of the pain, so these authors described IC and gave readers keys to diagnosis and treatment. When a woman has urinary urgency and frequency, dyspareunia, nocturia, and/or pelvic pain, IC/PBS should be part of the diagnostic evaluation, the team said.

IC Hurts Sex
Ottem DP, Carr LK, Perks AE, Lee P, Teichman JM. Interstitial cystitis and female sexual dysfunction. Urology. 2007 Apr;69(4):608-10.

These urologists asked 97 consecutive patients who came to their clinic to keep a voiding diary and answer the Female Sexual Function Index (FSFI) questionnaire and the Pelvic Pain and Urgency/Frequency (PUF) questionnaire. Of these patients, 75 had IC (average age 38) and 22 did not (average age 43), so served as a control group. The differences between IC patients and controls were what you might expect in terms of voided volume and PUF scores. The average FSFI score for IC patients was 20 compared with 29 for the control patients. Using 26.55 as the cutoff for a normal score, 51 patients with IC (68 percent) had an abnormal FSFI score compared with only 3 control patients (14 percent). In addition, IC patients scored worse in all categories-not just pain. These results help validate that IC patients do have sexual problems that go beyond pain and that they deserve help from their healthcare providers for these problems.

Bladder Trouble Puts Dent in Women's Sex Life
Coyne KS, Margolis MK, Jumadilova Z, Bavendam T, Mueller E, Rogers R. Overactive Bladder and Women's Sexual Health: What is the Impact? J Sex Med. 2007 May;4(3):656-66.

This study, which shows that overactive bladder (OAB) can have a negative effect on women's sex life, helps demonstrate that IC does, too. Some of the same symptoms are the source of sexual problems in OAB and IC. In this study, 34 sexually active women with OAB filled out the Sexual Quality of Life Questionnaire and Overactive Bladder Questionnaire. Incontinence (which few IC patients have) had a tremendous effect on OAB patients, with 91 percent of continent women having sex one to three times a week versus 50 percent of those with incontinence. But IC patients do have pain with intercourse, and the researchers found that more than half of the continent women had this kind of pain. Both continent and incontinent women had difficulty achieving orgasm if they had pain, fear of incontinence, or anxiety related to intercourse. All of the women were concerned about the impact of their bladder problems on their sex lives, but a third would not start the discussion of those issues with their doctor. These authors recommended that clinicians should routinely ask their patients with bladder problems about sexual health.

Pelvic Pain Affects Relationships
Strzempko Butt F, Chesla C. Relational patterns of couples living with chronic pelvic pain from endometriosis. Qual Health Res. 2007 May;17(5):571-85.

Some 15 to 20 percent of US women of reproductive age have chronic pelvic pain, and it affects their relationships. These researchers interviewed 13 couples where the woman had endometriosis to find out what their relationship patterns were like and how endometriosis affected them. The authors described five basic patterns that vary based on the degree of closeness, how care responsibilities are enacted, the degree to which couples are conjoined in their experiences, and how much their lives are overtaken with the disease. These patterns demonstrate the couples' relationship concerns as well as how they manage illness day to day.

It Takes a Village to Treat Pelvic Pain
Moise G, Capodice JL, Winfree CJ. Treatment of chronic pelvic pain in men and women. Expert Rev Neurother. 2007 May;7(5):507-20.

In an article in a journal for neurologists, these authors point out that physicians and other healthcare professionals often misdiagnose chronic pelvic pain in men and women or recommend inappropriate and sometimes dangerous treatments. Because chronic pelvic pain has components that affect psychological, peripheral nerve, autonomic, central nervous, visceral, connective tissue, hormonal, and other systems, solo practitioners are not usually equipped to provide adequate treatment, according to these authors. They advocate a team-oriented approach that coordinates the efforts of many different types of healthcare providers.

Researchers Develop Bladder Questionnaire for Fibromyalgia Patients
Brand K, Littlejohn G, Kristjanson L, Wisniewski S, Hassard T. The Fibromyalgia Bladder Index. Clin Rheumatol. 2007 May 3; [Epub ahead of print]

These investigators believe that the usual Interstitial Cystitis Symptom and Problem Index (ICSPI) doesn't capture information well enough about bladder symptoms in fibromyalgia patients, so they did some mathematical analysis of the ICSPI in 90 fibromyalgia patients. Because some combinations of symptoms in these patients seemed to be distinct from those in the original ICSPI, the researchers configured eight of the items differently to form a new Fibromyalgia Bladder Index. The two subscales of this index include the Bladder Urgency and Pain Subscale with the Bladder Frequency and Nocturia Subscale. The investigators found this to be consistent and valid over time and believe that this new scale will help researchers understand bladder problems better in fibromyalgia patients. It may not be clear when this scale is appropriate for certain patients, since many patients diagnosed with IC first then have fibromyalgia or vice versa, but this article demonstrates that rheumatologists are beginning to recognize the relationship between fibromyalgia and IC, which is an important and positive step.

Recognizing IC in Men
Forrest JB, Nickel JC, Moldwin RM. Chronic prostatitis/chronic pelvic pain syndrome and male interstitial cystitis: enigmas and opportunities. Urology. 2007 Apr;69(4 Suppl):S60-3.

IC experts are realizing that IC is more common in men than originally thought and also that it's often mistaken for chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). In one of the major urology journals, these IC and CP/CPPS experts outlined for their urology colleagues what the similarities and differences are and how to diagnose IC in men, especially men who were diagnosed first with CP/CPPS. This should be very helpful for men with IC.

Four Percent of Primary Care Patients May Have IC
Rosenberg MT, Page S, Hazzard MA. Prevalence of interstitial cystitis in a primary care setting. Urology. 2007 Apr;69(4 Suppl):S48-52.

This study done in a busy Michigan primary care practice reported a high prevalence of IC based on the Pain/Urgency/Frequency (PUF) questionnaire and either the potassium sensitivity test or an anesthetic bladder challenge (ABC). For one year, every patient who came to this practice filled out the questionnaire. If the score suggested IC, the patients got either test. (The ABC test involves instilling an anesthetic cocktail into the bladder to see if that eases pain.) Of the 3,833 patients surveyed, 13.1 percent had scores suggesting IC, including 17.5 percent of women (357 of 2,043) and 8.3 percent of men (152 of 1,840). Then, based on the PUF scores and test results, 4.3 percent of patients (168 of 3,883) got an IC diagnosis.

Nerve Regulation Could Provide Keys to IC Treatment
Nazif O, Teichman JM, Gebhart GF. Neural upregulation in interstitial cystitis. Urology. 2007 Apr;69(4 Suppl):S24-33.

Many causes have been proposed for IC, but no matter what the potential cause, how the bladder responds is typical. At first, proteinase-activated receptors are kicked into high gear. After whatever started the irritation stops, various genes are dampened. When the bladder stretches, the bladder lining cells release adenosine triphosphate (ATP), which activates certain receptors that signal bladder sensations and pain. These and other discoveries suggest that both local nerves and nerves in the spinal cord are sensitized in patients with IC. It isn't clear whether those nerve mechanisms and inflammation cause IC or are the result of other events in IC patients, but research on these processes should lead to a better understanding of IC and should also bring new treatments.

Pelvic Pain Persists after Hysterectomy
Brandsborg B, Nikolajsen L, Hansen CT, Kehlet H, Jensen TS. Risk factors for chronic pain after hysterectomy: a nationwide questionnaire and database study. Anesthesiology. 2007 May;106(5):1003-12.

These Danish pain specialists sent a questionnaire about pain to 1,299 women one year after their hysterectomy (for reasons other than cancer). A remarkable 90 percent of the women returned the questionnaires. Eighty-five percent of the respondents had pain before surgery, but after surgery, the rate of chronic pain was also high-32 percent. Of those who had chronic pain after surgery, 14 percent had pain more than two days a week. Women who had pelvic pain before surgery had triple the odds of having pain after surgery compared with women who didn't have pain before surgery, and women who had surgery because of pelvic pain had triple the odds of having pain after surgery compared with women who didn't have their surgery because of pelvic pain. The odds of having pain after surgery were also about three times higher for women who had pain problems other than pelvic pain than for women who didn't have nonpelvic pain. Women who had spinal anesthesia had a lower risk of pain than women who had general anesthesia. The abstract did not mention IC as a source of pelvic pain.

Women with Pelvic Pain Left in Limbo
McGowan L, Luker K, Creed F, Chew-Graham CA. How do you explain a pain that can't be seen?: The narratives of women with chronic pelvic pain and their disengagement with the diagnostic cycle. Br J Health Psychol. 2007 May;12(Pt 2):261-74.

These investigators, who talked to 32 women with chronic pelvic pain, found that the patients' search for diagnosis left them feeling disempowered, in limbo, and at a loss as to how to manage their pain. Many of the women tried to get a diagnosis and got stuck at one point in the process or tried repeatedly to no avail and just disengaged from the medical system. The very nature of seeking a diagnosis, the investigators said, can prohibit women from telling their stories.

Fight or Flight System Skewed in Pelvic Pain and Related Disorders
Tanriverdi F, Karaca Z, Unluhizarci K, Kelestimur F. The hypothalamo-pituitary-adrenal axis in chronic fatigue syndrome and fibromyalgia syndrome. Stress. 2007 Mar;10(1):13-25.

The fight-or-flight system in the body that involves the hypothalamus and the pituitary and adrenal glands (the HPA axis) is altered in a number of related disorders, including chronic fatigue syndrome (CFS), fibromyalgia syndrome (FMS), chronic pelvic pain, and post-traumatic stress disorder (PTSD). What role the HPA axis plays, however, is not yet clear. Most studies show that the system is underactive. These authors said no anatomic abnormality of the glands is known in these disorders (although it is known that the adrenal glands in cats with feline IC are abnormal, which the authors did not note in the abstract). It could be that the HPA abnormalities, including low cortisol production, are a response to chronic stress, speculated the authors. They detailed measurements that have been made of HPA axis function in CFS and FMS patients.

PTs Try to Put Pelvic Pain in Context
O'Sullivan PB, Beales DJ. Diagnosis and classification of pelvic girdle pain disorders--Part 1: a mechanism based approach within a biopsychosocial framework. Man Ther. 2007 May;12(2):86-97.

O'Sullivan PB, Beales DJ. Diagnosis and classification of pelvic girdle pain disorders, Part 2: illustration of the utility of a classification system via case studies. Man Ther. 2007 May;12(2):e1-12.

In two articles, these Australian physical therapists try to put pelvic girdle pain in context. Recognizing that these disorders are controversial and often seem to have no apparent cause, the PTs challenged some current beliefs about sacroiliac joint dysfunction and tried to classify pelvic girdle pain based on the complex nature of the pain and its many potential causes. They noted that the pain can be modulated by both the peripheral and central nervous system. The authors believe there is a large group of pelvic girdle disorders that are mediated by what is happening in the outer body and that the disorders have something to do with what they call "excessive force closure" of the pelvis, which results in abnormal stresses on pain-sensitive structures. The authors also acknowledge the effects of psychosocial factors on pain and the complex interaction between pelvic pain problems and hormones.

ICA Resources

NEW! 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.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic04.html#BKBYCA07

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.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic10.html#BKMF06

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.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic04.html#BKBYCI06

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.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic09.html#UM05

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

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic01.html#TRUM05

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.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic01.html#XOP205

5. Products That Can Help YOU Today!

CystoProtek®: 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.alavenpharm.com/ or call 888-317-0001.

Desert Harvest Aloe Vera: Aloe vera is a powerful anti-inflammatory and pain reliever. 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.

Desert Harvest makes this very concentrated form of aloe vera just for IC patients. They remove the two chemicals in the aloe plant that cause diarrhea, and all of the water and fiber, leaving all of the other ingredients of the plant intact. Desert Harvest dries their aloe without heat. Heat can damage the active ingredients, and adds no fillers or preservatives.

For more information and a free sample, please visit http://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 that has been shown in research studies on IC patients to help reduce bladder pain and urinary urgency when used with acidic foods and beverages.

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

Minute Maid Acid-Reduced Frozen Orange Juice Concentrate: 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 http://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.