CAFÉ ICA, VOLUME 7, NUMBER 8, September 2007

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

CAFE ICA, VOLUME 7, NUMBER 7, September 2007
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.

1. Hot Off the Press
1.1 NIH to MAPP the Direction of IC & Related Conditions!
1.2 Detroit Forum Draws Overflow Crowd
1.3 Register Now for the ICA Regional Forum / Arizona (Tempe)!
1.4 Urigen Announces National Study of IC/PBS Instillation
1.5 Plethora Solutions Reports Success of Phase II Trial

2. Voices in the IC Community
2.1 Caring for the Whole You Is Ohio Meeting's Theme
2.2 Tucson PBS Airs IC Story
2.3 NVA Faculty Award Announcement
2.4 Christin Veasley Named Associate Executive Director of NVA

3. News YOU Can Use!
3.1 Please help to TARGET the gene or genes of interstitial cystitis!
3.2 ICA Call to Action: Sexual Pain & Relationships Survey
3.3 Chronic Pain Patient Richard Paey Granted Full-Pardon and Clemency

4. The Latest IC Research Highlights

5. Upcoming Conferences

6. Products That Can Help YOU Today!

I keep saying this-but I really mean it: people like you who take the time to support other ICers are so important to us. If I didn't have all the wonderful information the ICA provides, I would really feel like I was just blindly going down paths searching for treatment-not really knowing if I was headed in the right direction or not. So thank you once again. - Kelli M.

1. Hot Off the Press

1.1 NIH to MAPP the Direction of IC & Related Conditions!

For immediate release:
September 20, 2007

We have groundbreaking and very exciting news for people with interstitial cystitis and in particular, those who also suffer from the many related conditions that have been connected to IC. On September 19, 2007, the National Institutes of Diabetes and Digestive and Kidney Diseases (NIDDK), along with several other National Institutes of Health (NIH) institutes, announced that it will be committing up to a total of $7.5 million dollars per year starting in the summer of 2008 for a five-year project to study IC and related conditions!

This is so important for people with IC as well as those with related conditions. You shared your concerns regarding the lack of research in this area, and the ICA listened and took action! The ICA spearheaded this initiative by working with Congress for many years and directly with the NIH to advocate for a government research program that would fund a multi-year, full-scale project in this untapped multidisciplinary area.

This program is named the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network, and is designed to advance the understanding of urologic chronic pelvic pain syndromes associated with the bladder (i.e., interstitial cystitis/painful bladder syndrome, IC/PBS) and the prostate gland (i.e., chronic prostatitis/chronic pelvic pain syndrome, CP/CPPS).

The MAPP Research Network will conduct multidisciplinary, collaborative, multi-site, basic, translational, and clinical research in this relatively uncharted area. An important focus of the MAPP Network will be investigation of the biologic and behavioral relationships between IC/PBS and CP/CPPS and other frequently related symptom-based conditions.

Related chronic pain syndromes of primary interest of the MAPP project are:

- fibromyalgia
- irritable bowel syndrome (IBS)
- chronic fatigue syndrome

Vulvodynia and migraine headache may also be studied if adequate scientific justification is provided. The ultimate aim is to provide findings useful for development of future prevention or treatment strategies. It is anticipated that these studies will also increase the understanding of the pathophysiology, biologic and behavioral risk factors, natural history, and genetics of IC/PBS and CP/CPPS.

To view the official NIH Request for Applications (RFA), please click here.

In addition to the NIDDK, other NIH organizations participating in MAPP include:

The National Institute of Child Health and Human Development (NICHD)
http://www.nichd.nih.gov/

The National Institute of Neurological Disorders and Stroke (NINDS)
http://www.ninds.nih.gov/

Office of Research on Women's Health (ORWH)
http://orwh.od.nih.gov/

Our thanks to the NIH, and specifically to the NIDDK with whom we have worked so closely, for helping to make this vision a reality for so many!

1.2 Detroit Forum Draws Overflow Crowd

Longtime ICA staff members (and sisters!) Deanne Zwerk and Debi Kerr, both of Michigan, enjoyed the day, helping with registration and talking with "fellow" IC patients.

The ICA is on the road again this fall! The third leg of our groundbreaking four-part ICA Regional Forum series was held on September 8, 2007, at the Detroit Sheraton Novi in Detroit, Michigan. An enthusiastic audience of more than 115 people with IC and their friends and family members joined the ICA for presentations by ICA Medical Advisory Board Member David Burks, MD, and Donna Carrico, NP. On hand from the ICA were many ICA staff and volunteers. 

Dr. David Burks engages the packed audience at the recent Detroit Forum.

Dr. David Burks was recruited to Henry Ford Health Systems in 1989 to start a program in voiding disorders and incontinence. At Henry Ford Hospital he quickly developed an interest in female urology with a special interest in interstitial cystitis. He has worked extensively with the National Institutes of Health. He was an investigator on the MTOPS BPH trial, the Interstitial Cystitis Data Base group and was co-Principal Investigator in the Interstitial Cystitis Clinical Trials Group. He is currently Principal Investigator in the Interstitial Cystitis Clinical Research Network, a five-year multicenter grant to treat IC patients with novel therapies. He is currently serving a four-year term on the UKGD study group of the NIDDK / NIH. Dr. Burks is also on the Board of Governors of the Henry Ford Medical Group and has a very busy voiding dysfunction practice. At the ICA Regional Forum/Detroit Dr. Burks made two presentations: "IC: Where are we now?" and "IC: Where Are We Going?"

Donna Carrico, RN, CNP, MS, during her presentation on complementary therapies.

Donna J. Carrico, RN, CNP, MS is the Program Coordinator and a healthcare provider with the WISH Program (Beaumont Women's Initiative for Pelvic Pain and Sexual Health) in Detroit. She currently provides care for women with IC, pelvic pain, sexual dysfunction, vulvodynia, prolapse, and pelvic floor dysfunction in the WISH program at the Beaumont department of Urology. She is an investigator on many WISH research studies and has presented research findings at meetings of the American Urological Association (AUA) and the Society for Urodynamics and Female Urology (SUFU). She spoke on: "Two Complementary Therapies for IC/PBS: Posterior Tibial Nerve Stimulation and Guided Imagery."

ICA Development Consultant, John P. Biggs, chats with Bill and Shirley Conner of Oxford, Michigan.

There was ample time through the afternoon for audience questions and answers, and the group was very engaged. The ICA provided IC-friendly refreshments during two breaks as well as free samples of some of our most popular ICA Resource Materials and Desert Harvest giveaways.

The final forum in the 2006-07 four-part series will be held in the Phoenix area city of Tempe, Arizona on October 13th.

1.3 Register Now for the ICA Regional Forum / Arizona (Tempe)!

ICA Regional Forum / Arizona (Tempe)
Saturday, October 13th
The Buttes Resort, Tempe, Arizona
1:00 to 5:00 pm, with registration from 12 noon to 1 pm

Featured Guest Speaker: Daniel Brookoff, MD

Dr. Daniel Brookoff is one of the foremost pain experts in the field of IC. He is affiliated with the Center for Medical Pain Management at Presbyterian - St. Luke's Medical Center in Denver, Colorado, where he has a large clinical practice specializing in the treatment of individuals with IC and related illnesses. Dr. Brookoff is a long-time member of the ICA's Medical Advisory Board and he is a frequent contributor to our programs and publications.
The sponsors for the event include:

ALAVEN PHARMACEUTICAL, LLC,
ASTRA TECH, INC.
DESERT HARVEST, INC.
UROPLASTY, INC.

Click here for more information and to register.

1.4 Urigen Announces National Study of IC/PBS Instillation

Urigen Press Release, September 21, 2007 / BURLINGAME, Calif.--(BUSINESS WIRE)--Urigen Pharmaceuticals, Inc., a specialty pharmaceutical company focused on the development of treatments for urological disorders, has initiated a double-blind, placebo controlled, cross-over study to investigate URG101 as a treatment for acute symptoms of painful bladder syndrome/interstitial cystitis (PBS).

The URG101 study will compare the efficacy of URG101 (intravesical lidocaine-heparin formulation) and placebo in reducing acute symptoms of PBS. The study will enroll patients at several U.S. clinical sites with the first patient having been enrolled and dosed.

"The URG101 study is important for those patients diagnosed with Painful Bladder Syndrome," commented Bill Garner, M.D., Urigen's Chief Executive Officer. "Physicians currently treating patients with PBS have few treatment options, none of which address the patients' need for relief from acute symptoms."

To read this press release in its entirety, please click here.

To read more about URG101, please click here.

1.5 Plethora Solutions Reports Success of Phase II Trial

Plethora Solutions announced in early September that its double-blind, placebo controlled clinical trial of PSD597 --- 200 mg lidocaine (as 5 ml of 4% lidocaine solution) instilled into an empty bladder followed by 5 ml of 8.4% sodium bicarbonate (alkalinizing agent) --- was successful. The study involved over 100 IC patients from the United States and Canada. This study was followed by an open-label study which also delivered very promising results.

To view the progress report in its entirety, please click here (PDF file).

2. Voices in the IC Community

2.1 Caring for the Whole You Is Ohio Meeting's Theme

L to R: Dr. Buffington, Tina, support group member Lisa Stoof, Dr. Gilleran.

Taking care of all your IC challenges was the focus of the Columbus, Ohio IC support group's second annual regional forum where experts in urology as well as rheumatology, psychology, neurology, sexuality, gynecology, physical therapy, and self-care spoke to the attendees. Eighty-five IC patients, friends, and family members came to Columbus to learn from these experts, network with each other, gather valuable information and products from the ICA and other exhibitors, and even participate in IC research. Attendees came not just from Ohio, but also from Indiana, Pennsylvania, Kentucky, Michigan, West Virginia, Colorado, Illinois, and Florida, noted support group leader Tina Gilfilen.

"Again, this year we couldn't have done the forum without the help and knowledge of Tony and Jason," said Tina. That's because Ohio State IC researcher Tony Buffington, DVM, PhD, and Ohio State urologist Jason Gilleran, MD, had fellow research and clinical associates follow their generous example to donate their time to speak. Two of last year's speakers were back by popular demand: urologist Bruce Woodworth, MD, who now practices in Knoxville and teaches at the University of Tennessee, and local physical therapist Cathy Konkler.

Offering their expertise on treatment and trends in those associated disorders were four other specialist presenters, a rheumatologist, a neurologist, a sex therapist, and an obstetrician gynecologist.

To read a detailed report from this meeting, please click here.

2.2 Tucson PBS Airs IC Story

Our thanks to the University of Arizona's KUAT public television station for recently producing an excellent piece about interstitial cystitis. The very informative segment featured local IC patient Beth Barrasso, who spoke candidly of her personal struggle with IC. Also, Kalpesh Patel, MD, of Old Pueblo Urology in Tucson, spoke compassionately about the difficulties faced by people with IC when they try to seek medical help.

To view the segment, please click here.

2.3 NVA Faculty Award Announcement

Dr. Stanley C. Marinoff Vulvodynia Career Development Award

PURPOSE
The Dr. Stanley C. Marinoff Career Development Award was established to encourage junior faculty to pursue their clinical and/or academic interest in vulvodynia. The award provides seed money for one of the following: (i) medical research (ii) establishment of a vulvar pain clinic, or (iii) writing a publication on vulvodynia. The NVA's intent is to enrich the professional growth of faculty in this field and enable them to pursue further funding opportunities.

ELIGIBILITY
Applicants must have a clinical or full-time faculty appointment up to the level of assistant professor.

FUNDING
The award is $7500. The applicant's academic or clinical institution is encouraged to contribute at least a matching amount. The grant may be used to fund any direct costs relevant to the project. (NVA does not permit any amount of the award to be spent on overhead or indirect costs.)

SELECTION PROCESS
NVA coordinates the evaluation process, ensuring that each proposal is reviewed by a panel of experts in the field. The panel members submit their recommendations to the NVA Executive Board which selects the award recipient.

DEADLINE
Please submit a brief letter of intent by Wednesday, October 31, 2007 to Chris Veasley at chris@nva.org. The final application should also be submitted electronically to chris@nva.org by Friday, December 14, 2007. The award recipient will be announced by March 2008.

REPORT
A final one to two page report must be submitted within one year of receipt of funding.

CONTACT INFORMATION
For additional information, contact:

Christin Veasley
Associate Executive Director
National Vulvodynia Association
401-398-0830
chris@nva.org

2.4 Christin Veasley Named Associate Executive Director of NVA

Newly appointed Associate Executive Director Christin Beasley with NVA President and Executive Director Phyllis Mate.

The National Vulvodynia Association Executive Board is proud to announce that their director of research and professional programs, Christin Veasley, has been named associate executive director. She will remain in charge of research and medical projects but will also take on other executive decision-making responsibilities. NVA executive director Phyllis Mate describes her experience working with Christin, "Nine years ago, when we hired Chris in her mid-twenties, she proved herself quickly and focused on enhancing patient services and developing programs for the medical community. In recent years, Chris has played a key role in developing and implementing our Congressional awareness campaign, as well as other major initiatives, and it is my pleasure to name her associate executive director."

The ICA congratulates Chris on this achievement and we thank her for her years of hard work and dedication to helping all sufferers of vulvar pain conditions. Thank you, Chris!

3. News YOU Can Use!

3.1 Please help to TARGET the gene or genes of interstitial cystitis!

A Message from John Warren, MD

If you and another living family member(s), even a distant one, have interstitial cystitis or a painful bladder, you can help us find the gene or genes of IC that can be passed in some families.

We are recruiting for the MaGIC study (Maryland Genetics of Interstitial Cystitis) performed by the University of Maryland IC Center.

This study is funded by the National Institutes of Health and can be performed completely by telephone and mail.

If you wish to see if your family is eligible, please contact us at:
http://icresearch.umaryland.edu/

or

call toll-free 1-877-STUDY IC (1-877-788-3942).

Sincerely,
John Warren, MD

3.2 ICA Call to Action!

Sexual Pain & Relationships Survey - Please Participate!

Secret Suffering (www.secretsuffering.com), a website dedicated to helping women cope with sexual pain and its impact on their relationships, is currently conducting a very innovative online survey.

The site and the survey are the creations of Susan Bilheimer, author and lecturer on women's midlife issues and sexual pain who is also a sexual pain sufferer, and Robert J. Echenberg, MD, a gynecologist who is an expert on chronic pelvic pain in women. Dr. Echenberg practices at Women's Health Care Associates in Bethlehem, Pennsylvania.

The survey is designed in two parts so that your partner (should you have one) can take a separate survey as well. Results from the survey are updated regularly on the site.

Click here to take the survey.

Click here to link to the Sexual Suffering website:
http://www.secretsuffering.com/

Click here to visit Dr. Echenberg's website:
http://www.cpp.medem.com/

3.3 Chronic Pain Patient Richard Paey Granted Full-Pardon and Clemency

A Message from the American Pain Foundation (APF):
Richard Paey, the 48 year-old pain patient who was sentenced to 25 years in jail in Florida for "drug trafficking," was granted a full-pardon and clemency Thursday, September 20, by Florida Governor Charlie Crist and his Cabinet. The Governor's pardon and clemency order illustrates the kind of understanding and compassion that needs to be much more present in our medical system and in the ranks of law enforcement, regulatory, and prosecution systems.

The American Pain Foundation applauds Governor Crist's sensible and compassionate act in righting a situation that should have never gotten so out of control. The American Pain Foundation also commends the tireless work of the Paey family in motivating and galvanizing the pain advocacy community to take a stand against the unfair treatment of people in pain. The emotional and financial toll inflicted on the Paey family by Florida law enforcement is simply unacceptable.

Please click here to read the APF report in its entirety.

From the ICA Mailroom:

Thank you for your help. I would not be alive today without your help to manage this pain. -Terry Ann B.

4. The Latest IC Research Highlights

Women with IC Have Had More Pelvic Surgeries
Ingber MS, Peters KM, Killinger KA, Carrico DJ, Ibrahim IA, Diokno AC. Dilemmas in diagnosing pelvic pain: multiple pelvic surgeries common in women with interstitial cystitis. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Sep 18; [Epub ahead of print]

This study, which we first reported on from the 2006 American Urological Association meeting, has now been published in an international journal. Urogynecologists and others who treat pelvic floor related problems will now be aware that women with IC have had more pelvic surgeries than other women, which suggests that the women may actually have had IC, were misdiagnosed, and had the surgeries unnecessarily or that pelvic surgery may have played a role in bringing on IC symptoms. The conclusion isn't clear, but the association between IC and the surgeries is. These investigators conducted a survey of 215 women with IC and 823 controls. The survey revealed that significantly more women with IC than controls had had hysterectomies (42.3 versus 21.4 percent), bladder suspensions (21.9 versus 5.7 percent), pelvic or genital surgeries other than cystoscopy (26.5 versus 16.2 percent), and laparoscopic pelvic surgeries (22.8 versus 8.3 percent). In addition, more women with IC than controls had been diagnosed with endometriosis (25.6 versus 9.8 percent) and fibroids (24.2 versus 16.3 percent). Interestingly, 68 percent of the IC patients who had hysterectomies had the surgery before they got their IC diagnosis, and most got IC not too long after-within one to five years.

Urinary Tract Problems Are Common and Don't Discriminate
Barry MJ, Link CL, McNaughton-Collins MF, McKinlay JB; for the Boston Area Community Health (BACH) Investigators. Overlap of different urological symptom complexes in a racially and ethnically diverse, community-based population of men and women. BJU Int. 2007 Sep 14; [Epub ahead of print]

The Boston Area Community Health (BACH) study is a very large (more than 5,000 subjects) and ethnically diverse study that is looking at urologic symptoms. In this analysis, the researchers asked patients about symptom patterns that fit the picture of benign prostatic hyperplasia (BPH), chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), IC/painful bladder syndrome (PBS), and incontinence. About a quarter of men and women of all ages met the definition for one or more of the target symptom patterns, and there was no significant variation in how common those patterns were among the different races and ethnic groups (black, white, and Hispanic). About 16 percent of men and women had one symptom pattern, whereas 7 percent had overlapping patterns. Except for urinary incontinence and IC/BPS in both men and women, the prevalence of all the symptom complexes were associated with one another significantly more often than would be expected by chance. Overlapping patterns of lower urinary tract symptoms and pelvic pain are common, the researchers concluded.

Coexistence of Endometriosis, IC Is Common
Paulson JD, Delgado M. The relationship between interstitial cystitis and endometriosis in patients with chronic pelvic pain. JSLS. 2007 Apr-Jun;11(2):175-81.

This study corroborates that IC and endometriosis often occur together in patients at a urogynecology clinic. Women who came to the clinic complaining of pelvic pain filled out the Pain Urgency and Frequency questionnaire, reported their pain levels, and underwent a laparoscopy and a cystoscopy with hydrodistention. Of the 162 patients, 123 (76 percent) patients had active endometriosis, 133 (82 percent) had IC, and 107 (66 percent) had both. Thirteen (8 percent) had disease unrelated to endometriosis and IC. With treatment, pain levels went down in all patients except those who had only endometriosis. Doctors seeing patients with chronic pelvic pain should take a thorough history that takes nongynecologic causes of pain into consideration and looks into urinary problems and gynecologic problems completely. A physical examination should be done, and simultaneous laparoscopy and cystoscopy may be warranted, said these urogynecologists.

Gynecologists Alerted to Coexistence, Confusion of IC, Endometriosis
Butrick CW. Patients with chronic pelvic pain: endometriosis or interstitial cystitis/painful bladder syndrome? JSLS. 2007 Apr-Jun;11(2):182-9.

This urogynecologist wrote about the overlap of symptoms and actual overlap in endometriosis and IC/PBS that has been researched and written about recently and suggested ways to get to a proper diagnosis. Gynecologists should be alert to the possibility of IC when patients come to them with chronic pelvic pain typical of endometriosis, he said.

IC Patients Prefer Pudendal Nerve Stimulation
Peters KM, Feber KM, Bennett RC. A prospective, single-blind, randomized crossover trial of sacral vs pudendal nerve stimulation for interstitial cystitis. BJU Int. 2007 Oct;100(4):835-9.

IC patients prefer pudendal over sacral nerve stimulation, showed this study, which we reported on from the 2005 American Urological Association meeting. The 22 patients with severe IC had tined leads placed at both the S3 (sacral) level of the spine and at the pudendal nerve. Without knowing which lead was being stimulated, the patients had each one tested for 7 days, and the best one was implanted. Seventeen of the 22 patients (77 percent) went on to have the permanent stimulator implanted. Seventy-seven percent of patients chose the pudendal lead and 24 percent chose the sacral lead. The overall reduction in symptoms was 59 percent for pudendal nerve stimulation and 44 percent for sacral nerve stimulation, a significant difference. Six months after the implant, voiding improved by 41 percent in those who got pudendal nerve stimulation and 33 percent in those who got sacral nerve stimulation.

IC Shows Autoimmune Characteristics
van de Merwe JP. Interstitial cystitis and systemic autoimmune diseases. Nat Clin Pract Urol. 2007 Sep;4(9):484-91.

Although there's no direct evidence that autoimmune reactions cause IC, it is known that IC patients have autoantigens, and their presence is unlikely to be just an effect of the disease. The evidence for an autoimmune cause is indirect, but it is there, including the strong preponderance in women (typical of autoimmune diseases) and association with known autoimmune disease in patients and their families, especially with Sjogren's syndrome. Sjogren's research has suggested a role for autoantibodies to a certain type of muscarinic receptors called M3 receptors. These receptors are found on bladder muscle cells, and they play a role in bladder contractions. M3 receptor autoantibodies may be important both early in the noninflammatory aspects of IC and late in inflammatory features.

Series of Hydrodistentions with Hyaluronic Acid Helpful in Severe IC
Ahmad I, Sarath Krishna N, Meddings RN. Sequential hydrodistension and intravesical instillation of hyaluronic acid under general anaesthesia for treatment of refractory interstitial cystitis: a pilot study. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Sep 14; [Epub ahead of print]

In this pilot study, 23 women with severe IC underwent a series of hydrodistentions with hyaluronic acid instillation under general anesthesia. The women got two instillations a month apart at first, and then additional treatments at longer intervals depending on how well they did. Of the 23, 17 responded to treatment right away. Responders underwent an average of 6.6 treatments with three months in between. The average follow-up was about 16 months. In all the responders, bladder ulcerations healed and inflammation resolved. Their average bladder capacity under anesthesia rose from an average of 492 mL (about 2 cups) to an average of 776 mL (about 3¼ cups).

Combination Therapy with Corticosteroids and Heparin Called Helpful
Taneja R, Jawade KK. A rational combination of intravesical and systemic agents for the treatment of interstitial cystitis. Scand J Urol Nephrol. 2007 Jun 28;:1-5 [Epub ahead of print]

At this research institute in New Delhi, 26 IC patients underwent combination therapy with instillations of hydrocortisone and heparin and took oral antimuscarinics (oxybutynin or tolterodine, ie, Ditropan or Detrol). Patients who had severe, ulcerative or recurring flares of IC also received intramuscular injections of the corticosteroid triamcinolone weekly for six weeks. At an average of about 18 months, frequency went from an average of 23 to 11 voids per day, which was acceptable to 80 percent of the patients. Six patients (23 percent) had a relapse in the form of pain and were treated satisfactorily with the triamcinolone injections.

Small BCG Study Shows Improvement, Contradicts Large US Studies
Irani D, Heidari M, Khezri A. The efficacy and Safety of Intravesical Bacillus-Calmette-Guerin in the Treatment of Female Patients with Interstitial Cystitis: A double-blinded Prospective Placebo Controlled Study. Urol J. 2004 Spring;1(2):90-3.

Unlike the large randomized, placebo-controlled study in the United States, this very small, placebo-controlled study of BCG therapy in Iran showed positive results in IC. In this study 15 IC patients received BCG instillations and 15 received placebo. At a mean of two years after treatment, 11 women (73 percent) in the BCG group reported they had more than 40 percent improvement in their IC symptoms compared with only 3 women who used the placebo instillations. Women who used BCG reported an average 62 percent improvement overall in signs and symptoms.

Thai Hospital Details Bladder Removal and Substitution Experience
Kochakarn W, Lertsithichai P, Pummangura W. Bladder substitution by ileal neobladder for women with interstitial cystitis. Int Braz J Urol. 2007 Jul-Aug;33(4):486-92.

At this hospital in Thailand, urologists treated 35 women with severe IC by removing the bladder and substituting a new bladder made of intestinal tissue (ileum). The women had had IC for at least two years and no relief from other treatments. In this surgery the urethra was cut 0.5 cm below the bladder neck, and the surgeons used the Studer technique to create the new bladder from 65 cm of ileum. Patients reported no pain and good daytime and nighttime urinary control. All patients could void spontaneously, and only two women had residual urine after voiding and needed to perform clean intermittent catheterization. Twelve of the 30 sexually active women had mild pain with intercourse but without disturbance to their sexual life.

Bladder Lining's Role in IC Examined
Teichman JM, Moldwin R. The role of the bladder surface in interstitial cystitis/painful bladder syndrome. Can J Urol. 2007 Aug;14(4):3599-3607.

These urologists looked at all the medical literature on the role of the bladder lining in IC because a commonly proposed cause of IC is a defect in the lining that allows noxious substances through to irritate tissues and nerves. Studies of the structure, function, and composition of the bladder surface support the idea. What causes the changes isn't known, but recent research has implicated changes in the levels of growth factors and/or compounds that protect against irritants and potentially irritating factors. Nevertheless, IC likely has many different causes, the authors said.

Theory Says Inflammation Is Key to All Types of Pain
Omoigui S. The biochemical origin of pain: The origin of all pain is inflammation and the inflammatory response. Part 2 of 3 - Inflammatory profile of pain syndromes. Med Hypotheses. 2007 Aug 27; [Epub ahead of print]

This pain specialist believes that inflammation is the key to all pain-acute or chronic-and that the biochemical inflammation profile (including cytokines, neuropeptides, growth factors and neurotransmitters) in a disease is a key to treatment. The goal should be to inhibit or suppress production of the substances that promote inflammation and to inhibit, suppress, or modify nerve transmission. The article describes biochemical inflammatory profiles of various pain syndromes, such as fibromyalgia, IC, migraine, neuropathic pain, complex regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD), and vulvodynia. No matter whether the pain is acute or chronic, peripheral or central, nociceptive or neuropathic, the underlying origin is inflammation and the inflammatory response, and activation of pain receptors, transmission and modification of pain signals, neuroplasticity, and sensitization of the central nervous system are all on one continuum, according to the author. Based on this idea, he proposes to reclassify and treat pain syndromes based on their inflammatory profile.

Mast Cells in the Brain Change with Bladder Pain
Dubayle D, Servière J, Menétrey D. The effects of viscero-somatic interactions on thalamic mast cell recruitment in cystitic rats. J Neuroimmunol. 2007 Aug 21; [Epub ahead of print]

These researchers found that, in rats with a kind of cystitis, irritation of the abdominal wall on one side results in a higher concentration of mast cells on the other side in the part of the brain called the thalamus. This doesn't happen in mice without cystitis. The effect also seems to be limited to a part of the thalamus associated with input from the viscera and the body wall. Mast cells in the thalamus might be involved in that part of the brain's sensory processes, including some aspects of visceral pain and referred pain.

Colon-Bladder Crosstalk Affects Bladder Contractions
Noronha R, Akbarali HI, Malykhina A, Foreman R, Greenwood-Van Meerveld B. Changes in Urinary Bladder Smooth Muscle Function in Response to Colonic Inflammation. Am J Physiol Renal Physiol. 2007 Aug 22; [Epub ahead of print]

This research team looked at how the crosstalk between the colon and bladder affects bladder function over the short and long term. They determined how the bladder muscle reacted to various stimulators (electrical, a cholinergic agonist, and potassium chloride) during and after colon inflammation in rats. During colon inflammation, although the bladder muscle looked normal, it showed abnormal contractions in response to electrical and cholinergic agonist stimulation (but not potassium). During recovery from colon inflammation, the abnormalities lessened. The researchers concluded that colon inflammation does produce abnormal bladder muscle contraction, in part through cholinergic nerves, and that the effect is reversible when the colon inflammation subsides.

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.

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

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Our Pocket Guide Series Continues!

IC: Expert Opinions, Volume II

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

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SUNA 38th ANNUAL CONFERENCE
October 12-16, 2007
Hyatt Regency
Phoenix, AZ

This year's conference will offer a variety of topics and outstanding speakers. Whether your goal is to learn more about urologic medications, influence health policy, or learn the latest in urologic technologies, there is something for everyone. Preconference workshops on basic urology, advanced practice, and certification review will also be offered. This conference will help you improve your patient care, broaden your horizons, and reach new heights in career satisfaction.

For more information, visit SUNA's website at /portals/0/images/cafeica/www.suna.org or call toll free 1-888-TAP-SUNA.
Click here to visit the event web site.

American Public Health Association
2007 Annual Meeting & Exposition
November 3-7, 2007
Washington, DC
Click here to visit the event web site.

SUNA 2008 ANNUAL SYMPOSIUM
February 28 - March 2, 2008
Tampa Waterside Hotel and Marina
Tampa, FL

This conference, focusing on pelvic pain and pelvic floor disorders, will offer a variety of topics and outstanding speakers, from basic workshops to advanced practice content, all offering current evidence-based information. A certificate of completion will be offered to attendees completing the Urodynamics track. For more information or to submit an abstract, visit SUNA's website at /portals/0/images/cafeica/www.suna.org or call toll free 1-888-TAP-SUNA.

6. 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.

To find out more please visit http://www.minutemaid.com/.

To find out more, please click here.