CAFÉ ICA, VOLUME 7, NUMBER 3, March/April 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 Advancing Our Mission during 2007's First Quarter
1.2 New ICCRN Clinical Trials Underway
1.3 New ICA Because You Care Series Booklet Now Available!
1.4 IC Support, Education, Alternative Therapies Take Spotlight at SUNA Meeting
1.5 Recent IC Media Coverage - More on the Way, Hopefully!

2. Voices in the IC Community
2.1 The ICA Attends Two Very Important Japanese IC Conferences
2.2 Griffin P. Rodgers, MD, Named Director of NIH's NIDDK
2.3 Faith, Physical Therapy, Fortitude Help This Sister Face IC

3. News YOU Can Use!
3.1 Survey Demonstrates Huge Impact of Genital Pain
3.2 Foundation Offers Much Needed Help When Facing Insurance Dilemmas
3.3 FDA Issues New Tolterodine (Detrol) Warnings
3.4 FDA Public Health Advisory on Tegaserod Maleate (marketed as Zelnorm)

4. The Latest IC Research Highlights

5. Upcoming Conferences

6. Products That Can Help YOU Today!

From the ICA Mailroom:

You are, once again, a lifesaver. Thank you for the information. I cannot tell you what a comfort it is to know the ICA is just a few keyboard strokes away. -TH

1. Hot Off the Press

1.1 Advancing Our Mission During 2007's First Quarter

The ICA has been focusing extensively in the first part of 2007 on advancing our mission to provide patient services, promote public awareness and patient rights, and raise funding for important, cutting edge IC-related research.

In January, ICA Founder and President, Vicki Ratner, MD, traveled to Washington, DC, to meet with Griffin P. Rodgers, MD, who is the new Director of the National Institute of Diabetes Digestive and Kidney Diseases (NIDDK), one of the National Institutes of Health (NIH). Interstitial cystitis falls under the purview of the NIDDK and, consequently, it's important that the ICA stay in touch with the NIDDK staff to let them know the challenges and opportunities we face, as well as to encourage increased IC research funding through the federal government.

As we reported in the previous edition of Café ICA, during February, Dr. Ratner again traveled to Washington to participate in a key conference related to the issue of a prospective "name change" of IC to "Bladder Pain Syndrome." The Washington DC Consensus Meeting on Interstitial Cystitis/Painful Bladder Syndrome was organized by the ICA and the Association for Reproductive Health Professionals (ARHP). No final decision regarding the name change was made at this conference, but the ICA's point of view was presented and generally embraced by many professionals who were present. The "name change" controversy continues and the ICA promises to have representatives at every important meeting where this issue will be discussed. To read the White Paper that was developed from this meeting, please click here: http://www.ichelp.org/pressreleases/ICPBSWhitePaperFinal.pdf

Also in February, Dr. Ratner traveled to Santa Monica, California, as an appointed committee member of the NIH Interstitial Cystitis Clinical Research Network (ICCRN). This government group was created to help determine which medications may be most promising for future IC treatments. To view the ICCRN's latest clinical trials that were launched this month, please refer to 1.2 in this issue of Café ICA. The ICCRN meeting in California was followed by a trip to meet with Allergan Pharmaceuticals (Irvine, CA), a company interested in the development of innovative treatments for IC.

In March, as a member of the oversight committee, Dr. Ratner attended the RAND Interstitial Cystitis Epidemiology (RICE) study meeting held in Washington, DC. This is the second year of an important NIH-funded, five-year national IC epidemiology study.

In addition, Dr. Ratner and Creda Perilli are continuing to work in conjunction with the University of Chicago's National Organization for Research (NORC) on the ICA's own Measurements and Evaluation of Trends Relevant to Interstitial Cystitis (METRIC) epidemiology survey. Findings of this study are now being analyzed and prepared for publication.

As you may know, the ICA has received a multi-year grant from the Centers for Disease Control and Prevention (CDC), in Atlanta, to help fund the expansion of our ongoing public awareness efforts. In mid-March, as part of our new awareness campaign, Dr. Ratner, ICA Medical Advisory Board Member Robert Moldwin, MD, ICA Board Member and National Patient Support Advocate Rhonda Garrett traveled to New York City, where they met with senior health magazine editors, feature writers, and publishers. This was the first of a number of trips planned to connect with the media around the country in hopes that coverage of IC will grow. These media-related efforts are important because, when the public-at-large and the medical community begin to recognize IC as both prevalent and debilitating, we will see more money for research, along with more understanding and better treatment for IC patients from medical professionals.

In addition, Dr. Ratner traveled to Japan, where they were invited guests of the Second International Consultation on Interstitial Cystitis-Japan (ICICJ), attended by more than two hundred IC researchers and clinicians from throughout Asia, Europe, and the US. While there, Dr. Ratner had the opportunity to speak at the scientific meeting. During this trip, the ICA also met with the Japanese IC patient organization called the Comfortable Urology Network of Japan, where ICA staff presented and participated in Q & A sessions. The Japanese were gracious hosts and we anticipate that their IC organizations will play an increasingly important role in raising funds for IC research, patient services, and the promotion of public awareness throughout Japan.

On Friday, April 20 the ICA hosted the ICA Regional Forum - Los Angeles. Dr. Moldwin was the guest speaker for this event. While LA had been on our roster of scheduled ICA Regional Forums for 2007, we had not planned to hold this one until the fall of 2007. However, our plans changed quickly just a couple of weeks ago when Dr. Moldwin contacted that ICA to let us know that he would be in LA to conduct IC educational presentations to physicians and that he would love to for us to hold an IC patient meeting as well so that he could also meet and talk with IC patients while in Los Angeles. We apologize for the short notice regarding this particular ICA Regional Forum but we felt that we could not pass up this rare opportunity.

The ICA has also been representing IC at various other important conferences and educational opportunities that have taken place during the first quarter of 2007 including the 8th International Association for Chronic Fatigue Syndrome (IACFS, formerly the AACFS) Conference on Chronic Fatigue Syndrome, Fibromyalgia and other Related Illnesses; American Academy of Pain Management (AAPM) Annual Meeting; the Annual Bladder and Bowel Symposium of the Society for Urologic Nurses and Associates (SUNA); and the National Kidney and Urologic Diseases Clearinghouse Meeting.

In summary, there remains much to be done by all of us in order to move forward in discovering new treatments and a cure for IC. The ICA remains committed to doing everything possible to assist the many individuals with IC (and their families), who depend upon us to represent their interests and to promote research that will provide a better quality of life in the future for all who suffer from IC.

Thank you all for your investment in our cause, which is, of course, your cause. We are all in this together and are acutely aware that, without your support, nothing would be possible.

1.2 New ICCRN Clinical Trials Underway

The Interstitial Cystitis Collaborative Research Network (ICCRN) is giving us new opportunities to bring better treatments for IC. Now, you may be able to participate in important studies of two new potential IC treatments, mycophenolate mofetil (CellCept) and physical therapy.

CellCept
The CellCept study aims to investigate the safety and effectiveness of this immunosuppressant drug to help IC patients who have severe IC that other treatments haven't helped.

The FDA has approved this medication for use in patients who have had organ transplants. In combination with other drugs, CellCept helps to prevent the rejection of the transplanted organs, such as kidneys, livers, and hearts. But this drug can also help patients with autoimmune disease. CellCept is also frequently used for (but not FDA approved) the treatment of severe rheumatoid arthritis, disease caused by the body's own immune system acting against healthy tissues in the joints.

Because of its special activity, CellCept may be useful in treating certain inflammatory diseases or conditions like interstitial cystitis. In this study, CellCept will be used in much lower doses than are used when treating the above conditions. CellCept is not FDA approved for use in treating patients with interstitial cystitis which makes the use of CellCept investigational for this study. Researchers aim to test its use in patients with severe IC at 11 participating research centers:

Participating Sites

University of Rochester, Rochester, New York
Elizabeth (Betty) M. Smith, BS
Clinical Research Coordinator
585/275-0989

University of Maryland, Baltimore, Maryland
Rosanna Dinh, RN, CCRC
Temporary ICCRN Coordinator
410-328-7736

University of Iowa, Iowa City
Mary Eno, RN, Certified Clinical Research Coordinator
319-384-9265

William Beaumont Hospital, Royal Oak, Michigan
Eleanor Anton, RN, Clinical Research Coordinator
248-551-0885

Henry Ford Hospital, Detroit, Michigan
Michelle Peabody, RN, Clinical Research Coordinator
313-916-8972

Loyola University Medical Center, Maywood, Illinois
Judith M. Senka, RN, Research Nurse Coordinator
708-216-8495

Queen's University, Kingston, Ontario, Canada
Joe Downey, MSc CCRP, Research Coordinator
613-548-7832

Stanford University Medical Center, Stanford, California
Debra Clay, RN, Research Coordinator
650-724-1753

University of Washington, Seattle, Washington
Sharon Downing, RN, Research Nurse II
206-598-0850

University of California San Diego, La Jolla
Kristen Mangus, Assistant Study Coordinator
619-543-3275

University of Pennsylvania Health System, Philadelphia
Sylvia Salazar, MD, Clinical Research Manager
215-615-3780

Who can participate?

Patients who have had a diagnosis of painful bladder syndrome (PBS)/IC confirmed sometime in the past and considered unresponsive or refractory to previous PBS/IC treatments can participate. Patients should contact their closest site for more specific inclusion/exclusion criteria.

Click here for more information:
http://www.clinicaltrials.gov/ct/show/NCT00451867?order=6

Physical Therapy
Physical therapy has potential for treating both PBS/IC and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), so this study is being done jointly by the ICCRN and the Chronic Prostatitis Collaborative Research Network (CPCRN)-the United Pelvic Pain Collaborative Research Network (UPPCRN). Physical therapy has not had many formal studies done to show its usefulness for these patients, and this small study to include 48 patients aims to do that.

This study aims to look at two forms of physical therapy as treatments for IC/PBS and CP/CPPS and find out if symptoms improve and if the therapy is safe and tolerable. The study will be conducted at five centers. Both women and men who have not responded to previous therapies for either PBS/IC or CP/CPPS who haven't responded to previous therapies may be eligible. Contact the individual centers to see if you can participate.

Participating Sites

Cleveland Clinic, Cleveland, Ohio
Donel Murphy , Research Coordinator
216-445-7505

Loyola University Medical Center, Maywood, Illinois
Judith M. Senka, RN, Research Nurse Coordinator
708-216-8495

Northwestern University, Chicago, Illinois
Darlene Marko, RN, CCRC, Clinical Research Coordinator
312-695-3898

Stanford University Medical Center, Stanford, California (two centers)
Debra Clay, RN, Research Coordinator
650-724-1753

William Beaumont Hospital, Royal Oak, Michigan
Eleanor Anton, RN, Clinical Research Coordinator
248-551-0885

Click here for more information:
http://www.clinicaltrials.gov/ct/show/NCT00434343?order=15

1.3 New ICA Because You Care Series Booklet Now Available!

Because You Care: Being Your Own Best Advocate

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. '07 / Members $13.00 / Non-members $19.50 / BKBYCA07

CLICK HERE TO ORDER NOW!

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

1.4 IC Support, Education, Alternative Therapies Take Spotlight at SUNA Meeting

Once again, a Society of Urologic Nurses and Associates (SUNA) meeting proved to be a great one for supporting IC patients and educating these healthcare professionals about the latest in IC care.

At the Annual Symposium: Disorders of the Bladder, Bowel and Pelvic Floor held March 14-17 in Colorado Springs, SUNA's board voted to support the ICA's position on the name of the disorder. In addition, two lectures on the program were specifically about IC, and in the exhibit hall, ICA Fulfillment Coordinator Carolyn Coogan and ICA National Patient Advocate Linda Salin helped nurses and physical therapists learn more about IC and the latest treatments.

"I felt the name change issue was very important, so I brought it before the board," said SUNA President-Elect Tamara Dickinson, RN, who helps many IC patients at the urogynecology clinic at UT Southwestern Medical Center in Dallas, Texas. The vote to support the ICA's statement was unanimous.

In the exhibit hall, the professionals who went to the ICA exhibit booth snapped up every ICA brochure, fact sheet, and book there. And when those were gone, these eager professionals placed orders for more.

Linda explained why. "Often, urologists are busy with surgeries, so many of these urologic nurses have the primary responsibility for the IC patients in the practice." Today, many nurses do seem to know the basics about IC and know about standard therapies, but they don't always know that there are combinations of therapies to try, said Linda. "Once we got them thinking, not about treating IC, but about treating the symptoms of pain, frequency, and urgency, they realized there was much more that could be done." And the ICA's Treatment Guidelines and timely articles helped them learn about many more therapies.

"Some didn't realize, for example, that the anticonvulsant medications can often be useful for pain," said Carolyn, who relies on one of these medications herself for pain control.

One of the program's IC lecturers was ICA Medical Advisory Board member Ragi Doggweiler, MD, of University Urology, PC, in Knoxville, Tennessee, who spoke about alternative therapies, especially hypnosis for pain control. In fact, she hypnotized the audience. "We don't make you cluck like a chicken," she joked, explaining that hypnosis does not make people do things they would not want to do. Instead, it is a technique to release stress and relax deeply. "My jaw actually went a little numb, I was so relaxed!" said Linda. Dr. Doggweiler said that stress adds to pain and that helping patients release that stress and relax chronically tightened muscles can go a long way toward easing pain. With these techniques, many of her patients have been able to reduce their pain medication use.

Cindy Dobmeyer-Dittrich, RN, who works with Dr. Doggweiler, spoke about sacral nerve stimulation with InterStim for IC patients. She noted that it seems to work best in patients with moderate disease and is not always helpful for the pain component, although it can be.

Nurse Practitioner Donna Carrico, from the Women's Initiative for Pelvic Pain and Sexual Health (WISH) program at William Beaumont Hospital in Royal Oak, Michigan, spoke about the research from her center showing that 70 percent of women with IC also have pelvic floor dysfunction. She, too, talked about the value of hypnosis and relaxation in helping patients with pelvic pain. See our article in Café ICA about the CD she and her colleagues produced just for women with IC and pelvic pain. Urologic nurses' support of IC patients and the ICA, and enthusiasm for learning about the latest therapies puts them at the forefront of making life better for all IC patients.

The ICA is grateful for SUNA's leadership.

1.5 Recent IC Media Coverage - More on the Way, Hopefully!

Kudos to Health magazine and Woman's Day. The April issue of Health featured an information box that provides helpful quick facts about IC. The April 1st edition of Woman's Day featured an IC patient's story and that of her sister in the My Story section of the magazine. In the article entitled, It Was Worse Than Childbirth, Michelle McDuffee describes her own battle with IC and the sadness she felt when her sister Mia Eddy was also diagnosed with IC.

We love to see IC receiving its fair share of media coverage and the ICA is working diligently to ensure that IC becomes much more of a household term. That is why it is so wonderful to see IC being covered recently in major US magazines. The ICA is currently vying for more extensive media coverage through our national awareness campaign and we will keep you posted on the latest developments!

2. Voices in the IC Community

2.1 The ICA Attends Two Very Important Japanese IC Conferences

Members of the Second International Consultation on Interstitial Cystitis-Japan (ICICJ).

The ICA was honored to be a participant in the March, 2007, Second International Consultation on Interstitial Cystitis-Japan (ICICJ), which was held in the ancient city of Kyoto. The ICA's Founder and President Vicki Ratner, MD, traveled to Japan. Tomohiro Ueda, MD, PhD, Naoki Yoshimura, MD, Jorgen Nordling, MD, and ICA Medical Advisory Board Co-Chair, Philip Hanno, MD, were the members of the committee that organized this extraordinarily comprehensive three-day event.

IC researchers and clinicians from around the world met to discuss etiology, diagnostic, and treatment issues, and to continue the international dialogue about both the definition and the nomenclature of IC. Some of the liveliest discussions centered around the name change from IC/PBS (painful bladder syndrome) to BPS (bladder pain syndrome) which was first proposed by a group of European medical professionals last year (ESSIC - European Society for the Study of Interstitial Cystitis). The topic remains under discussion, to be continued at a proposed NIDDK-sponsored meeting in the fall of 2007.

Dr. Ratner addresses the ICA's concerns regarding name change issues at the ICICJ scientific meeting.

While there Dr. Ratner had the opportunity to speak at the scientific meeting (ICICJ). In addition, ICA staff presented during the concurrent Comfortable Urology Network patient meeting on the afternoon of March 23rd. These two conferences, one focusing on the IC scientific community in Asia and one on the burgeoning IC patient community in Asia, both highlighted the emerging involvement of Asian countries in the IC movement, including Taiwan, South Korea, and Japan.

Our thanks to Drs. Ueda, Hanno, Yoshimura, and Nordling for their efforts in planning the ICICJ event, to Ms. Nobuko Yutolu for overseeing all of the administrative aspects of both meetings, and Ms. Tomoko Yoshimura, who is a skilled interpreter and guide.

2.2 Griffin P. Rodgers, MD, Named Director of NIH's NIDDK

BETHESDA, MARYLAND -- Elias A. Zerhouni, MD, director of the National Institutes of Health (NIH), today announced the appointment of Griffin P. Rodgers, MD, as director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), effective April 1, 2007.

"Griff Rodgers is an outstanding physician-scientist and molecular hematologist. He has made many contributions to the study of globin disorders and is internationally recognized for his contributions to the development of effective therapy for sickle cell anemia and other genetic diseases of hemoglobin. In addition to his research experience, Dr. Rodgers is a dedicated and knowledgeable clinician and a first rate research administrator. He has all the qualities we search for in an Institute Director," said Zerhouni.

Dr. Rodgers, who was appointed Deputy Director of NIDDK in January 2001, was Acting Director of NIDDK and also serves as chief of NIDDK's Clinical and Molecular Hematology Branch, which he has headed since 1998.

As the new Director of the NIDDK, Dr. Rodgers will oversee an annual budget of $1.8 billion and a staff of 650 scientists, physician-scientists, and administrators. The Institute conducts and supports research on many of the most serious diseases affecting public health including diabetes, endocrinology, and metabolic diseases; digestive diseases and nutrition, including obesity; and kidney, urologic and hematologic diseases. NIDDK conducts and supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines at its research facilities in Bethesda, MD and Phoenix, AZ and at research institutions and medical centers throughout the United States. In addition, NIDDK also supports education programs to translate the results of research to health professionals, patients and the public.

To read this entire NIH press release, please click here:

http://www.nkdep.nih.gov/news/releases/niddk_directornewsrelease.htm

2.3 Faith, Physical Therapy, Fortitude Help This Sister Face IC

Sister Pauline Marcotte has faced dangers most of us can only imagine, and most of us wouldn't willingly face. She was a missionary in Haiti for nearly 30 years, helping the kids of the streets and helping adults to learn business skills. She was nearly killed twice in personal and political violence, and had good friends die.

She taught English, shorthand, and accounting in a secretarial school in Haiti. And even though she was a sister, she participated in a catechumenate group, which is a lay spiritual community within the parish. One of her friends in the group had a husband who didn't approve of his wife's participation. Once, he came into the school where the group was having Eucharist and struck the priest on the head with an iron pipe. Sister Pauline ran and put herself in between the attacker and the priest. "Then I knew I was not afraid to die," she recalled. Another member of the group talked gently to the man and got him out. The priest, who did not resist the attack, finished the Eucharist, and only then went to the hospital.

In the midst of political unrest, she once drove to a store to buy food. Suddenly, the atmosphere grew eerily quiet, and then a gang of people came down the street yelling and wielding rocks and machetes, smashing the windows of cars. Sister Pauline stayed in her car and prayed and prayed. And the violent crowd simply flowed around her car. She was safe.

Her best friend, who was learning to play the guitar with her, was not so lucky. At election time in Port au Prince, the friend went to a polling place at a school, which was overrun by men with guns and machetes. Everyone in the schoolyard was killed.

But the reason this Sister of St. Ann is in Marlboro, Massachusetts, today-and not Haiti-is not the danger or the stress of ministering to these crushingly poor people in an often-violent society.

It was IC. "Only IC brought me back here," she told the ICA.

"But I'd go back-right now," she said. "I love the people, and I miss my catechumenate community."

Some 35 years ago while she was in Haiti, she started having urinary tract infections and pain urinating and went to see a urologist there. But then, the problem didn't go away. She came back to the states periodically, and saw doctors and got antibiotics and all sorts of medications, to no avail. Finally on one of her trips home, after years of trouble, she begged her doctor for a referral to the Lahey Clinic, where she underwent a battery of tests. The urologists told her, "By process of elimination, we think you have IC."

She started receiving DMSO treatments with heparin, but that didn't keep her from her work. She went back to Haiti and would come back to the states in June and have a number of treatments. Then, in September, she'd go back to Haiti.

As the years went on, she needed more treatments. She would come back twice a year. But the treatments grew to be extremely painful for her. "One of the last times that I had the DMSO treatment, I was so sore. I was in the bathroom, and I said, 'I can't even leave this place.' I knew I had to leave and go down corridors and down the stairs. I thought, 'How am I ever going to make it downstairs?' And I said, 'Lord, just help me. Help me to get to the door.' He did it. But then I had the trip back to Marlboro from Burlington. And that's about 45, 50 minutes. 'Oh,' I said, 'I can't do this anymore. I can't do this.'"

At one point, the suffering was so bad, she prayed for a miracle. In fact, another sister once offered her an important, saintly relic. Sister Pauline took it and carried it for a while.

But then, on a retreat, she had a spiritual change in perspective. "I understood that I don't want a cure like that. If God wants to give me a cure, He'll give me a cure." She thought about the founder of her order, Mother Mary Ann, whose faith grew despite her suffering, and she decided to give the relic back. "I said, 'Thank you, but I don't need it.' From then on, I never prayed for a miracle, I just prayed for the courage and the strength to be able to take this."

But that didn't mean she didn't seek out better treatment. She would "go fishing," as she called it, for information and people who could treat her.

"Where I got the most help was the ICA. That is the best thing around!" she said.

She didn't use the Help Line or the Question Corner. She reads Café ICA and the ICA Update faithfully. "I read it from cover to cover. I love that magazine. I love it, I love it! I keep telling my friends to get it. I use my budget money to pay for that membership. I use it. It's worth it!"

Two years ago, Sister Pauline read the article about physical therapy and found the only treatment that really helps her. She tried to discuss it with a doctor she was seeing. "When I told the last doctor I had that, after looking it up and inquiring about it and reading about it, I was going to go for physical therapy and pelvic floor dysfunction treatment, he said, 'Oh, that's not going to help you.'"

Sister Pauline doesn't take no for an answer, though. Through referrals from fellow IC patients in the Natick/MetroWest IC Support Group, she found a pelvic floor physical therapist whose work really began to help. Sister Pauline even found another convent to stay in so she could see this therapist. And she traveled again so she could have a doctor inject trigger points to get even more effective therapy. That was better than all the numerous drugs she tried. And she tried many-the standard medications and even oral and intravaginal muscle relaxants and antiepileptic drugs-all to no avail. "I stopped every bit of it. I don't even take Tylenol."

She can't get as much physical therapy as she used to because insurance only pays for 15 minutes or so of internal work, unlike the 45 minutes she used to have. But luckily, she doesn't need quite as much physical therapy as she used to.

"But someone who's starting off-I think they need somebody like the therapist I used to have. The therapist has to work all around the pelvic floor-the abdomen, the back, the thighs-before they even start working inside because everything is tight," Sister Pauline advised.

It's the so-called alternative therapies that have helped her most. Physical therapy is at the top of her list. Acupuncture helped her at one point. And she does yoga, relaxation, heat, massage, and walking, saying her rosary. She loves the relaxation CD for women with pelvic floor dysfunction from the Beaumont Women's Initiative for Pelvic Pain and Sexual Health (WISH) program [please see /portals/0/images/cafeica/Vol07No01.html#3.1]. And she is careful about what she eats and drinks. "I'm trying to take care of myself, so I can get better to help others," said Sister Pauline.

Sister Pauline also goes regularly to the Natick/MetroWest IC Support Group meetings. She said she doesn't need that support herself so much. She goes to support the leader Molly Glidden and the others who need her.

"I pray every day for all of the people who have this, especially the young people," Sister Pauline told Café ICA. "We have a 15-year-old girl in our group. She must have had it when she was about 9 or 10. And they only diagnosed it at 12. And I'm praying for the researchers."

Faith is so important in coping with illness, said Sister Pauline. "I don't know what I'd do without it." But, she said, "You have to take care of yourself, too."

3. News YOU Can Use!

3.1 Survey Demonstrates Huge Impact of Genital Pain

This study assessed the prevalence of vulvodynia symptoms in a sample of US women and compared health characteristics of symptomatic and asymptomatic women. Epidemiologists at the University of Medicine and Dentistry of New Jersey discovered that nearly half of the women surveyed (45 percent) said that vulvodynia had an adverse effect on their lifestyle. A quarter of the women missed school or work at least once in the past year because of their symptoms. These findings demonstrate a "significant disruption of women's personal lives, including sexual function and overall quality of life, attributable to chronic vulvar pain," the authors said.

The researchers found that women with vulvodynia are more likely to have other conditions that are often associated with IC. Compared with healthy women, the women with vulvodynia were nearly three times as likely as healthy women to have chronic fatigue syndrome, three times as likely to have depression, and about twice as likely to have fibromyalgia or irritable bowel syndrome.

Also, the women with vulvodynia were six times more likely than healthy women to have recurrent urinary tract infections and four times more likely to have recurrent yeast infections. It isn't clear whether that means that vulvodynia was misdiagnosed or whether there was a relationship between vulvodynia and these infections.

Although this survey gave a lower estimate of vulvodynia in the population than previous studies have, the study demonstrated the huge impact on women's lives and the tremendous need for a better understanding of vulvodynia and how to treat it. The authors did mention dietary changes, physical therapy, topical medications, and antidepressants as therapies that can be effective.

3.2 Foundation Offers Much Needed Help When Facing Insurance Dilemmas

If you are a person with IC who is facing the prospect of losing your group health insurance because you can't work or other circumstances, it can be tough to sort out your options. This website of the Foundation for Health Coverage Education, a nonprofit organization that works to reduce the numbers of uninsured, can help you find out what your options are. The foundation's tools will show you what government and private plans you may be eligible for, gives you phone numbers and websites for all the plans, and has a special resource section to help you locate financial benefits and free or low-cost health benefits.

Foundation for Heath Coverage Education website:

http://www.coverageforall.org/index.htm

You can also receive help over the phone from the foundation at 800-234-1317.

3.3 FDA Issues New Tolterodine (Detrol) Warnings

The overactive bladder (OAB) medication tolterodine, which is marketed as Detrol, recently came under scrutiny by the FDA. The FDA has issued a statement regarding the following new adverse reactions that are being seen with the use of Detrol. Detrol is sometimes used by IC patients to treat urinary frequency problems as well urge incontinence, which is not a symptom of IC but can occur in addition to IC.

New adverse reactions include:

Central/Peripheral Nervous Sytem
Confusion
Disorientation
Memory Impairment
Hallucinations

Reports of aggravation of symptoms of dementia

To read the FDA statement, please click here:

http://www.fda.gov/medwatch/SAFETY/2007/mar07.htm

3.4 FDA Public Health Advisory on Tegaserod Maleate (marketed as Zelnorm)

The FDA recently issued a public health advisory to inform patients and healthcare professionals that the sponsor of Zelnorm (tegaserod maleate), Novartis Pharmaceuticals Corporation, has agreed to stop selling Zelnorm. Zelnorm is used for the treatment of irritable bowel syndrome with constipation, a condition that has been shown to be more prevalent in people with IC. Thus, Zelnorm is sometimes prescribed to people with IC and IBS.

Zelnorm is now being taken off the market because a new safety analysis has found a higher chance of heart attack, stroke, and worsening heart chest pain that can become a heart attack in patients treated with Zelnorm compared to those treated with a sugar pill they thought was Zelnorm.

The FDA announced the following:

At the FDA's request, Novartis Pharmaceuticals Corporation has agreed to stop selling Zelnorm.

Patients being treated with Zelnorm should contact their physician to discuss alternative treatments for their condition.

Patients who are taking Zelnorm should seek emergency medical care right away if they experience severe chest pain, shortness of breath, dizziness, sudden onset of weakness or difficulty walking or talking or other symptoms of a heart attack or stroke.

Physicians who prescribe Zelnorm should work with their patients and transition them to other therapies as appropriate to their symptoms and need.

In late February and early March 2007, Novartis Pharmaceuticals gave the FDA the results of new analyses of 29 clinical studies of Zelnorm for treatment of a variety of gastrointestinal tract conditions; the data from all the studies were combined to assess the chance of side effects on the heart and blood vessels. In each study, patients were assigned at random to either Zelnorm or a sugar pill they thought was Zelnorm. These 29 studies included 11,614 patients treated with Zelnorm and 7,031 treated with a sugar pill. The average age of patients in these studies was 43 years and most patients-88%--were women.

The number of patients who suffered a heart attack, stroke or severe heart chest pain that can turn into a heart attack was small. However, patients treated with Zelnorm had a higher chance of having any of these serious and life-threatening side effects than did those who were treated with a sugar pill. Thirteen patients treated with Zelnorm (0.1%) had serious and life-threatening cardiovascular side effects; among these, four patients had a heart attack (one died), six had a type of severe heart chest pain which can quickly turn into a heart attack, and three had a stroke. Among the patients taking the sugar pill, only one (or 0.01%) had symptoms suggesting the beginning of a stroke that went away without complication.

There may be patients for whom no other treatment options are available and in whom the benefits of Zelnorm treatment outweigh the chance of serious side effects. The FDA will work with Novartis to allow access to Zelnorm for those patients through a special program.

The FDA has also indicated to Novartis a willingness to consider limited re-introduction of Zelnorm at a later date if a population of patients can be identified in whom the benefits of the drug outweigh the risks. However, before the FDA makes a decision about limited re-introduction, any proposed plan would be discussed at a public advisory committee meeting.

From the ICA Mailroom:

Thank you so very much for your kind words of encouragement along with the attached valuable information. This week I sent my check and application for membership to the Interstitial Cystitis Association. I am looking forward to reading the current information available. Again, thank you for your prompt response. - JC

4. The Latest IC Research Highlights

Women's Health Publication Interviews Leading ICA Advisor
Hanno P. Toward optimal health: Philip Hanno, M.D., M.P.H., discusses improved management of painful bladder syndrome (interstitial cystitis). Interview by Jodi R. Godfrey. J Womens Health (Larchmt). 2007 Jan-Feb;16(1):3-8.

For its lead article, "Conversation with the Experts," the Journal of Women's Health interviewed IC expert and ICA Medical Advisory Board Co-chair Philip Hanno, MD, about how to manage IC/PBS. Dr. Hanno advised physicians to consider IC when patients have symptoms of an infection, but no bacteria, and pain that is usually associated with bladder filling. He emphasized that the potassium sensitivity test has no role in diagnosis. Doctors can distinguish IC from overactive bladder (OAB) by asking women if their urinary urgency is based on whether they have to go because they might wet themselves (OAB) or to relieve pain (IC/PBS). Dr. Hanno noted that diet can play an important role in easing symptoms. In fact, he said behavior modification (including diet and adjusting fluids) is the first treatment option. He discouraged "shooting for the moon" (multimodal therapy) at first, recommending a stepwise approach to add therapies on and remove those that don't work. If oral medications don't work after six months, Dr. Hanno recommended cystoscopy to look for and treat Hunner's ulcers. If pain isn't controlled by these treatments, Dr. Hanno recommended referring patients to a pain clinic. We are learning that chronic pain may actually change the nervous system to perpetuate pain, therefore earlier pain management may be beneficial. Bladder augmentation surgery, he said, does not have a predictable effect on pain. Urinary diversion, however, can deal with overwhelming frequency if that is not helped by anything else.

Acupuncture Shows Potential for Easing Pelvic Pain
Capodice JL, Jin Z, Bemis DL, Samadi D, Stone BA, Kapan S, Katz AE. A pilot study on acupuncture for lower urinary tract symptoms related to chronic prostatitis/chronic pelvic pain. Chin Med. 2007 Feb 6;2:1.

This small study of acupuncture in men with pelvic pain (chronic prostatitis/chronic pelvic pain syndrome or CP/CPPS) hints at acupuncture's potential for everyone with pelvic pain, including IC patients. These clinicians administered whole-body and ear acupuncture to 10 men with CP/CPPS twice a week for 30 minutes over six weeks. The men all had CP/CPPS for more than six months, were not helped by at least one standard therapy, and scored higher than 4 points on the pain section of the NIH Chronic Prostatitis Symptom Index (NIH-CPSI). At the beginning of the study, at three and six weeks of treatment, and six weeks after treatment, the men answered the NIH-CPSI and quality-of-life questionnaires. The average NIH-CPSI score at the beginning was 25 points. At three weeks, that had dropped significantly-nearly 18 points-and at 6 weeks, the score was down 9 points. The change remained significant 6 weeks later. Changes for the better were significant in six of eight quality-of-life categories, including body pain. Although this is a small, pilot study, the results are encouraging, and the authors called for larger, randomized trials of acupuncture for pelvic pain, with a focus on acupuncture point selection, treatment intervention, and durability of acupuncture effects.

Read the complete article here: http://www.cmjournal.org/content/2/1/1

Empowering Women with Pelvic Pain
Pearce C, Curtis M. A multidisciplinary approach to self care in chronic pelvic pain. Br J Nurs. 2007 Jan 25-Feb 7;16(2):82-5.

The best way to take care of patients with chronic pelvic pain is with a multidisciplinary approach, using the skills of gynecologists, physical therapists, nurses, psychologists, and pain management specialists, said these English nurses. When healthcare resources are limited, that's not always easy to achieve, however. They suggest using an alternative approach that provides patient education and support, empowering women to help themselves.

Magnetic Pelvic Floor Stimulation Less Effective for Pelvic Pain
Kirschner-Hermanns R, Jakse G. Magnetic stimulation of the pelvic floor in older patients: Results of a prospective analysis. [Article in German] Urologe A. 2007 Mar 14; [Epub ahead of print]

Since 2001, magnetic stimulation therapy has been available in Germany for treating urinary incontinence as an alternative to traditional electrical stimulation therapy. At a German urology clinic, 83 patients underwent magnetic stimulation therapy for stress incontinence, overactive bladder, and pelvic pain syndrome. The therapy was most helpful for those with stress incontinence who could not contract their pelvic floor muscles, with 74 percent of patients being able to do so after therapy. Among patients with overactive bladder, 54 improved. Only 23 percent of patients with pelvic pain syndrome improved. There were no differences in results between patients older than age 65 and younger ones.

Hysterectomy Prompts Urinary Symptoms
Khunda A, Bilal S, Adekunle R, Fishwick K. An unusual cause of postoperative detrusor overactivity. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Feb 28; [Epub ahead of print]

These English gynecologists reported a case of a complication of hysterectomy that caused overactivity of the bladder muscle. They noted that urinary symptoms are rare as a complication. Studies have shown that many patients have IC develop after a hysterectomy, but whether it directly caused IC is unclear. This report gives an indication that hysterectomy can sometimes cause urinary symptoms.

Boston Survey Uncovers Tip of Urologic Iceberg
McKinlay JB, Link CL. Measuring the Urologic Iceberg: Design and Implementation of The Boston Area Community Health (BACH) Survey. Eur Urol. 2007 Mar 19; [Epub ahead of print]

An extensive study of urologic symptoms in the citizens of the Boston area is under way. This article describes how it's being done. The researchers have surveyed 4,406 people-2,301 men and 3,205 women who are black, Hispanic, and white, ages 30 to 79. Participants have been asked about their urologic symptoms, other illnesses, medication use, reproductive history, quality of life, use of healthcare, physical activity, symptoms of depression, interpersonal stress, smoking, alcohol use, fluid intake, nutrition, menopausal status, sexual activity, abuse, physical measurements, and other demographic characteristics, including country of origin, marital status, employment status, and income. The study will also analyze blood samples. Unlike many other epidemiologic studies, this one is ethnically diverse and includes men and women in a broad age range. Importantly, the study focuses on symptoms, rather than diseases that can be defined different ways, so it should tell us a great deal about how many people have the symptoms of IC and pelvic pain and their treatment needs.

Boston Study Shows IC Symptoms More Common than Thought-In Women and Men
Clemens JQ, Link CL, Eggers PW, Kusek JW, Nyberg LM Jr, McKinlay JB; BACH Survey Investigators. Prevalence of painful bladder symptoms and effect on quality of life in black, Hispanic and white men and women.

The Boston-area study is already giving us information about how many people have symptoms of IC. Based on surveys of about 5,500 people, 0.83 to 2.71 percent of women and 0.25 to 1.22 percent of men had painful bladder symptoms, depending on the definition used. The problems are more common in women, middle-aged people (40 to 59 years old), and in people with lower socioeconomic status, but race and ethnicity made no difference. The symptoms have a significant adverse effect on quality of life. Painful bladder problems, said these analysts, are more common than physician diagnoses indicate, implying that many people are not getting help. Another important conclusion is that, even though IC and IC symptoms have been studied most in white women, the problems don't discriminate. In addition, even though the symptoms are more common in women than men, there's not as much of a difference as generally thought.

IC Prevalence Hard to Pin Down
Ibrahim IA, Diokno AC, Killinger KA, Carrico DJ, Peters KM. Prevalence of self-reported interstitial cystitis (IC) and interstitial-cystitis-like symptoms among adult women in the community. Int Urol Nephrol. 2007 Mar 13; [Epub ahead of print]

To get a handle on how common IC is, these investigators did a survey of 215 of their IC patients and 823 age-matched women living in the community. They used several different definitions of IC to analyze the results. Among women in the community, 3.7 percent said they had IC and 4.4 percent had IC-like symptoms. When the researchers included all the women who reported pelvic pain, the proportion rose to 17.3 percent. Those percentages applied to the population of the United States would mean that the number of US women with IC ranges from about 423,000 to 21.5 million. Although asking women whether they have ever been diagnosed with IC yields a similar percentage as asking about IC-like symptoms, those percentages may be an underestimate, said the researchers.

Urethral Pain Has IC's Unknowns
Kaur H, Arunkalaivanan AS. Urethral Pain Syndrome and Its Management. Obstet Gynecol Surv. 2007 May;62(5):348-351.

These British gynecologists tried to review what's known about urethral pain syndrome for their colleagues. They searched the medical literature looking for illnesses that might overlap or be the same, including painful bladder syndrome, urethral stenosis, and lower urinary tract symptoms. Like IC today, this pain syndrome is diagnosed mainly on symptoms and then elimination of other potential causes of the pain. Treatments range widely and are best by trial and error, and psychological support is important. The gynecologists called for using a multidisciplinary approach to treatment and a lot of sensitivity on the part of the treating physicians.

Bladder Endometriosis Can Look Like Urethral Pain, Pelvic Pain, IC
Pastor-Navarro H, Gimenez-Bachs JM, Donate-Moreno MJ, Pastor-Guzman JM, Ruiz-Mondejar R, Atienzar-Tobarra M, Salinas-Sanchez AS, Virserda-Rodriguez JA. Update on the diagnosis and treatment of bladder endometriosis. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Mar 15; [Epub ahead of print]

Bladder endometriosis is rare, but it can look like urethral pain syndrome or pelvic pain syndrome, said these urologists. That may mean that it could also look like IC to some physicians. The common signs of bladder endometriosis include menstrual bleeding into the bladder and urethral and pelvic pain. A major tip-off is that the symptoms occur during a certain part of the menstrual cycle. X-rays and other imaging studies aren't conclusive. The best way to diagnose it is with cystoscopy to look for endometrial tissue in the bladder and by studying biopsy specimens, said the urologists. Treatments are usually hormonal or surgical and should be designed for the individual patient according to age, desire for children, where the endometriosis is, how bad the symptoms are, and whether other organs are affected.

Evidence Grows of Connection Between Organs in Pelvic Pain
Liang R, Ustinova EE, Patnam R, Fraser MO, Gutkin DW, Pezzone MA. Enhanced expression of mast cell growth factor and mast cell activation in the bladder following the resolution of trinitrobenzenesulfonic acid (TNBS) colitis in female rats. Neurourol Urodyn. 2007 Mar 23; [Epub ahead of print]

These researchers at the University of Pittsburgh already showed that irritation of the colon can produce acute urinary symptoms. With time, they hypothesized, that can lead to nerve-related changes in the bladder and make the bladder sensitive. In animals with irritated colons, the researchers looked at the number of mast cells-both the total number and the number of activated ones-in bladder tissue. They also looked for levels of a mast cell growth factor and nerve growth factor in the bladder and levels of nerve growth factor in the roots of nerves in the lower spinal cord. The researchers discovered that, after irritation of the colon, bladder volume went down, frequency went up, and the percentage and density of activated mast cells went up. Levels of the mast cell growth factor and nerve growth factor in the bladder doubled. The levels of nerve growth factor in the nerve roots stayed the same. Based on the chronic bladder symptoms that resulted from irritation of the colon and the proportional increase in the number of activated mast cells, the researchers concluded that these changes can be lasting and occur because of stimulation of nerves that run from pelvic organs and converge, which then kick nerve growth factors into high gear in the bladder.

Pelvic Pain Patients May Have PTSD, Need Support
Meltzer-Brody S, Leserman J, Zolnoun D, Steege J, Green E, Teich A. Trauma and posttraumatic stress disorder in women with chronic pelvic pain. Obstet Gynecol. 2007 Apr;109(4):902-8.

In a North Carolina pelvic pain clinic, these investigators had 713 women fill out a questionnaire and found that about 47 percent reported having been abused either sexually or physically at some time and that 31 percent had post-traumatic stress disorder (PTSD). Women who had a history of trauma had poorer health, more symptoms, more surgeries, more days in bed, and more dysfunction because of pain than those who had not suffered trauma. Women who had PTSD had poorer health than the others. These researchers said their study shows that it's very important to screen for trauma and PTSD in women with pelvic pain so that they can get the support they need.

Distinguishing Between IC, OAB
Macdiarmid SA, Sand PK. Diagnosis of interstitial cystitis/ painful bladder syndrome in patients with overactive bladder symptoms. Rev Urol. 2007 Winter;9(1):9-16.

A urologist and a gynecologist point out that overactive bladder (OAB) and IC can be confused because they have similar symptoms, including urgency, frequency, and needing to urinate at night. They noted that OAB patients will often say they have urgency for fear of wetting, whereas IC patients have an urge to void to stop pain. The physicians cautioned that, sometimes, what looks like OAB that just doesn't respond to treatment may, in fact, be IC and need IC-directed therapy.

Studies Don't Show Consistent Results with Hyaluronic Acid Instillation
Iavazzo C, Athanasiou S, Pitsouni E, Falagas ME. Hyaluronic Acid: An Effective Alternative Treatment of Interstitial Cystitis, Recurrent Urinary Tract Infections, and Hemorrhagic Cystitis? Eur Urol. 2007 Mar 20; [Epub ahead of print]

Responses to hyaluronic acid instillation for IC are just not good enough to endorse its use, said these Greek scientists who reviewed the medical literature on it. They looked for studies that used the hyaluronic acid instillation for a range of bladder problems, including IC. Short-term responses in IC patients in seven studies ranged from a low of 30 percent to a high of 73 percent.

Damaged Protein May Play Role in IC
Parsons CL, Rajasekaran M, Arsanjani AH, Chenoweth M, Stein P. Role of sialic acid in urinary cytoprotective activity of Tamm-Horsfall protein. Urology. 2007 Mar;69(3):577-81.

This basic research pursued the idea that a protein that protects cells in the bladder, called Tamm-Horsfall protein, can lose some of its protective effect when a certain part of the protein is lost. Altering the protein in this manner resulted in cell death in bladders. In addition, instilling Tamm-Horsfall protein into bladders kept them from reacting as much to irritation than they otherwise would have.

Sacral Stimulation on Two Sides May Help
Steinberg AC, Oyama IA, Whitmore KE. Bilateral S3 stimulator in patients with interstitial cystitis. Urology. 2007 Mar;69(3):441-3.

Placing two stimulators, one on each side of the sacrum, might be helpful for IC patients. This small study reviewed the records of IC patients who had stimulators placed on both sides at the S3 level but did not compare the results with those of patients who got a stimulator on one side. Patients filled out a questionnaire called the Urinary Distress Inventory short form before undergoing the procedure and on follow-up visits and also kept voiding diaries. The average time the stimulators were in place was 14 months. The average frequency went down by about 10 bathroom trips a day and nighttime trips by 2.6, both significant changes. Patients were also satisfied with the results. Some patients who had bowel incontinence also improved.

Sex Doesn't Have to Stop for Patients Who Have Bladders Removed
Elzevier HW, Nieuwkamer BB, Pelger RC, Lycklama A, Nijeholt AA. Female sexual function and activity following cystectomy and continent urinary tract diversion for benign indications: a clinical pilot study and review of literature. J Sex Med. 2007 Mar;4(2):406-16.

These urologists looked at the effect of bladder removal on their women patients' sex lives and found that, on the whole, things didn't change. Seventeen of the 21 patients (81%), were sexually active, but almost half had sexual complaints before the operation. The most common were incontinence during intercourse, pain, and loss of interest in sex. After the operation, three of those patients were not sexually active, whereas two who were not sexually active before the operation became active afterward. In the patients who were sexually active beforehand, about 63 percent had no change or improved intercourse after the operation. Although, in general, sexuality for these women didn't change or even improved, urologists need to be sure women who have undergone this surgery get the sexual counseling they need.

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. Upcoming Conferences

The 26th Annual Scientific Meeting of the American Pain Society
May 2-5, 2007
Washington Convention Center
Washington, DC
http://www.ampainsoc.org/meeting/

American College of Obstetricians and Gynecologists 55th Annual Clinical Meeting
May 5-9, 2007
San Diego Convention Center
San Diego, CA
http://www.acog.org/acm/

American Urological Association 2007 Annual Meeting
May 19-24, 2007
Anaheim, CA
http://www.aua2007.org/

6. Products That Can Help YOU Today!

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.

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.

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.

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.

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/.