Cafe ICA August 2008 ~ volume 8, number 8
IC medical highlights, self-help and coping strategies, and ICA news
Alaven Pharmaceutical LLC |
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Farr Labs LLC |
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Being able to ask questions from the ICA outreach team is a great aid. Most people, including many doctors, do not have the time, knowledge, or interest to help with these day to day questions and problems. I have had IC since 1988 and can appreciate how much more is known and the help that is available. Thank you again, you perform a valuable service to people who still do not have too many places to go for help. Sincerely, Linda D.
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| Seven year-old Mykah Bacy and guest speaker Saundra Seidel. Mykah attended the Tulsa Forum with her mother and father. Both Mykah and her mother have IC. |
Rockville, MD (August 15, 2008) - The importance of people with interstitial cystitis (IC) playing an active role in management of their healthcare was the theme of the Interstitial Cystitis Association (ICA) Regional Forum held on Saturday, August 9 in Tulsa, Oklahoma.
Read more.
Rockville, MD (August 14, 2008) - Committed to finding the cause and ultimately, a cure for interstitial cystitis (IC), the Interstitial Cystitis Association (ICA) announced recipients of FY2007 ICA Pilot Research Program grants.
With the goal of providing seed dollars for basic science research about IC (a chronic, painful inflammation of the bladder), the ICA Pilot Research Program awarded funds to four multidisciplinary teams of scientists.
Read more.
Last year's annual report discussed the growth of the Interstitial Cystitis Association -- an upsurge made possible through your generous contributions.
The ICA entered Fiscal Year Ending September 30, 2007, energized and with new ideas. The Interstitial Cystitis Association: A Year of Transformation showcases different ways of thinking, fresh approaches, and a new face.
Read more.
The National Black Nurses Association hosted its 36th Annual Institute and Conference in Las Vegas, NV, August 4-8, 2008. Over 1,000 participants attended. This year's conference theme was "Nursing Practice: The Prevention and Management of Chronic Diseases."
Diane A. Smith, MSN, CRNP, who sits on the expert medical advisory committee of the Interstitial Cystitis Association/Association of Reproductive Health Professionals educational module Screening, Treatment, and Management of Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS), presented information on IC to a packed room of around 120.
IC was an easy fit for this theme and Ms. Smith gave an impassioned presentation that focused on the importance of listening to what patients have to say and taking IC seriously, not dismissing it.
Healthcare providers interested in having IC educational modules presented at upcoming conferences are encouraged to visit the Medical Education section of the ICA's website and to contact the ICA for more information.
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The ICA's premiere publication for healthcare professionals interested in the research and treatment of IC, ICA Professional Perspectives, is now available online.
Highlights of this 16-page issue include detailed information about the very latest directions in IC research as presented at the 2008 American Urological Association annual meeting and the NIDDK's June Symposium: Defining the Pelvic Pain Syndromes.
Read more. |
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The 2008 Fishbein Family IC Research Foundation Grant application deadline is:
September 15
The Fishbein Family IC Research Foundation focuses research efforts in the following areas of inquiry:
- Genetics of IC
- Immunology of IC
- Novel Therapies of IC
- Treatment of IC Pain
Suitable applicants are specialists with a particular interest in IC in the areas of urology, urogynecology, immunology, or pain management. This year there is a special interest in investigating the overlap between interstitial cystitis and the vulvar pain syndromes.
Fishbein Family IC Research Foundation research projects are normally funded for one year, and average between $10,000 and $30,000.
To apply for a Fishbein Family IC Research Foundation grant check visit the Research Center on the ICA home page. |
Thank you for a very timely and supportive response. The ICA site was very helpful and I will certainly send along financial support. I am so glad to have the resource. Mary Ann S.
The cover story of the August 1 clinical edition of Urology Times features the comprehensive article "Urologic Pelvic Pain: Diagnosis and Management," by Arun Srinivasan, MD, ICA Medical Advisory Board member Robert M. Moldwin, MD, and Jonathan D. Kaye, MD.
Read more.
The National Institutes of Health (NIH) Supplemental Appropriations Bill was signed into law by the President on June 30. This represents a 0.5% increase over the initial $298,645,000 in FY2008 appropriations. All Institutes/Centers received an across-the-board 0.5% increase, per the Supplemental Bill's Report Language direction to distribute based on the initial FY2008 appropriations formula.
Of specific interest to people with IC:
- $9.077 million for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), bringing the Institute's current FY 2008 funding level up to $1.716 billion.
- $6.673 million for the National Institute of Child Health and Human Development (NICHD), bringing the Institute's current FY 2008 funding level up to $1.261 billion.
- $5.570 million for the National Institute on Aging (NIA), bringing the Institute's current FY 2008 funding level up to $1.053 billion.
- $2.636 million for the Office of the NIH Director (all to the Common Fund), bringing this office's current FY 2008 funding level up to $1.112 billion.
A detailed chart of the distribution of FY2008 Enacted Level With Supplemental may be viewed at NIH Office of Budget.
Clinical Edge, a syndicated column from Mayo Clinic, featured IC recently. The column has been spotted so far in the Chicago Tribune and the Rochester Post-Bulletin.
Read more.
ICA Medical Advisory Board member Philip Hanno, MD, has written a special report for UroToday on the recent Pain of Urogenital Origin (PUGO) meeting in Glasgow, Scotland, August 15-16, 2008. Dr. Hanno, who is a contributing editor to UroToday, covers the meeting in his article "Urogenital Pain: Current Issues and Controversies."
PUGO is a special interest group of the International Association for the Study of Pain (IASP). The PUGO meeting was a 2-day meeting in Scotland prior to the IASP 12th World Congress on Pain. The purpose of PUGO's meeting was to consider the past, present, and future of urogenital pain and to outline current practice and have a look at what the future may hold. Speakers from North America and Europe gave invited lectures, and interactive sessions with all meeting attendees were interspersed throughout the proceedings leading to very lively discussions.
Read the full story at:
Longtime cystitis and IC researcher, Paul Fugazzotto, PhD, died on August 6, 2008, in Rapid City, South Dakota. He was 95 years old.
A dedicated pioneer in the investigation of urinary bacterial infections and interstitial cystitis from 1981-2007, he ran the Cystitis Research Center (his own private lab), in Rapid City, South Dakota.
Read more.
On August 19, Urigen Pharmaceuticals announced that the US Patent and Trademark Office issued the first patent for the use of URG101, an investigational, bladder instillation treatment for painful bladder syndrome/interstitial cystitis (PBS/IC). Patent number US 7,414,039 broadly covers the use of the URG101 product in the treatment of PBS/IC. The term of the patent extends into 2025.
URG101 is a bladder instillation (requires catheterization) that consists of alkalinized lidocaine (an anesthetic) and heparin (thought to help to repair/soothe the bladder lining). The ingredients in URG101 have been mixed together to form bladder instillations for several years. Urigen's URG101 combines these two active ingredients in a premixed formula, making it more convenient for IC health providers.
Read more.
Looking for a few good women...
- Sexual Health Research Lab - Queen's University (Canada) is in need of women who experience vulvar pain to participate in an online study. The purpose of the study is to examine pain, relationship and sexual functioning and body image. The results of this study will be used to better understand how vulvar pain impacts women and will hopefully increase awareness of this problem and impact the way vulvar pain is treated.
Participation begins with a brief telephone call. Staff will explain more about the study and ask women a few questions to determine their eligibility. Calls are completely confidential and participants may choose not to answer any of the questions. If eligible, women will be given a login ID number and a website to visit where they complete several questionnaires anonymously. The survey takes 45-60 minutes to complete. Upon completion, women will a check for $10 (Canadian). If women have partners that would also like to participate, they will be given a second ID number for their partners to complete the study. In this case, both the participant and her partner would each receive $15 for their participation. If women would like to know what the study finds, the researchers will send them the study results upon completion.
If you would like more information or are interested in participating, please send an email to shrl@queensu.ca or call 613-533-3276. Alternately, information can be viewed online.
- Doctoral Dissertation - Argosy University, Chicago Campus: A clinical psychology student is conducting an anonymous research study for her doctoral dissertation. This on-line study seeks to better understand how vulvodynia can affect a woman's sexual identity and relationship satisfaction. Eligible participants need to be 18 years or older, identified as having vulvodynia, and to have been in a heterosexual relationship at some point in the past 2 years.
For more information, contact Monika Shiba, MA, at dashibas@gmail.com or take a few minutes to complete the survey.
A recent study has uncovered 21 new genes for Crohn's disease, a chronic form of inflammatory bowel disease (IBD) that typically affects the large and small intestines. IBD has been found at a much higher rate in people with IC in comparison to the general population (Peeker et al 2003, Alagiri et al 1997). This gene discovery, funded in part by the National Institutes of Health (NIH), brings the total number of known genes associated with Crohn's disease to more than 30 and advances understanding of causes and potential avenues to develop new treatments.
Read more.
Did you know that you, family members, loved ones, and/or friends can help the ICA's efforts by making donations to the ICA via various workplace campaigns?
The Combined Federal Campaign Launches September 1st
Each fall, Federal government employees are encouraged to make charitable donations through the Combined Federal Campaign (CFC) to the participating nonprofit organization of their choice. This year, we encourage you to make your donation to the Interstitial Cystitis Association (ICA) by entering:
- ICA's CFC Code Number 10578 on your CFC Pledge Card
Why The ICA? Because your contributions help us to keep programs and services operating at peak strength, so that every IC patient who needs help can have it, no matter where he or she may live, no matter how disabled they may be. Your donation dollars also enable the ICA to continue to fund new IC research projects, as well as work closely with Congress to ensure ongoing IC-specific research funding at the federal level. Your CFC contribution CAN make a difference for IC sufferers.
Other Ways to Contribute Through the Workplace
- The United Way. The ICA has federal 501(c)(3) nonprofit status and can therefore be contributed to under the "donor option" line of the United Way pledge card.
- Matching Gift Programs. Many large and small employers (AT&T, American Express, Citibank, IBM, Mobil, Pfizer, and TRW, for example) have their own donor programs that will match your contribution to the ICA. To find out if your company offers such a program, check with the human resources department at your workplace. Ask for the necessary forms to make your ICA donation worth twice as much!
- Employer Workplace Campaigns. Your company may have its own charitable campaign program. Usually, your contribution can be deducted directly from your paycheck.
With your help, we can continue to increase IC research funding, educate the medical community, promote public awareness of IC, provide patient support, and continue our quest for our ultimate goal: A CURE FOR IC!
IMPORTANT: Please notify us directly if you give through the CFC or United Way so that we can thank you personally and recognize your gift. We also suggest that you ask your company representative to release your name to the ICA. As always, thank you for your generous gifts and for supporting the ICA's efforts!
The National Health Council (NHC), of which the ICA is a member, recently contacted us to identify possible volunteers within the IC patient advocacy community to appear on Richard Cohen's radio program on WABC, Strong at the Broken Places.
However, the NHC has learned that WABC plans to discontinue Mr. Cohen's weekly one-hour broadcast. We encourage you to contact WABC radio and urge them to keep the program on the air. You may send an email to webmaster@wabcradio.com. Please copy Kelly Clapp at clapp@nhcouncil.org on your communication.
Mr. Cohen's program focuses on coping with disabilities and chronic illnesses, with an emphasis on personal stories. It offers a good opportunity to gain increased visibility and awareness in pursuit of our common mission to provide a united voice for people with chronic diseases and disabilities.
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Sample Letter to Use as a Guide for Your Own Letter
Dear WABC:
I am writing to discourage you from canceling Richard Cohen's radio program Strong at the Broken Places. Programs such as these that cover chronic, often misunderstood, illnesses are important to me because I live with a chronic, debilitating bladder disease called interstitial cystitis (IC).
IC is a painful bladder condition that affects more than one million people in the United States. There is no known cause, no cure, and there are no uniformly effective treatments for IC. IC remains very poorly understood, and takes an average of 5 to 10 years to obtain a correct diagnosis. There is still no specific diagnostic test or marker for IC, and few viable treatments are available.
[Insert a brief description of your personal IC story here.]
Increased awareness about IC among both the public, as well as the medical profession, is still urgently needed. We feel that these concerns are critical and need to be addressed and acted upon promptly to ensure a brighter future for people with IC as well as those who struggle with other chronic illnesses.
Sincerely
[Your name and contact info. here] |
I never expected such an in depth reply. I am almost in tears reading how helpful you have been! Thank you SO much for taking the time to send this information. I will make a donation! Right now!! Alexandra
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September 15
The ICA's Pilot Research Program funds research in the following areas of inquiry:
- Etiology of interstitial cystitis
- Epidemiology of the disease
- Neurophysiology
- Serum or urine markers
- Potential IC treatment modalities
- Pregnancy and IC
- Pain management
Suitable applicants are specialists with a particular interest in IC in the areas of urology, urogynecology, or pain management.
ICA Pilot Research Program research projects are normally funded for one year, up to $10,000 and must be completed in one year.
To apply for an ICA Pilot Research Program grant visit www.ichelp.org and click on RESEARCH CENTER. |
Warren JW, Langenberg P, Greenberg P, Diggs C, Jacobs S, Wesselmann U. Sites of Pain from Interstitial Cystitis/Painful Bladder Syndrome. J Urol. 2008 Aug 14. [Epub ahead of print]
This latest analysis from the University of Maryland's Epidemiology of IC (EPIC) Study indicates that IC pain is generated from the bladder itself. The researchers asked recently diagnosed IC patients in a systematic way about where they felt pain and what it was like. Nearly all the 226 respondents to the survey said that "pain, pressure, or discomfort" was a good way to describe the sensations they had from IC. Two thirds had pain in two or more places. The rank of the most common places where patients had pain were
1) suprapubic (over the bladder),
2) urethra,
3) genitals, and
4) places other than the genitals or urinary tract.
That same ranking in location held for where the pains were the only ones, where they were the worst and most frequent or constant ones, and whether they were affected by the voiding cycle and food and drink (that is, as worsening with filling or with certain food and drink and getting better with urination).
There was also a consistent pattern in the ranking of where patients had allodynia (abnormally high pain sensitivity), with their being most sensitive to touch or had pain worsen with tampons (in order) at the genitalia, urethra, over the bladder, and then places outside the genitals and urinary tract. The pattern was similar for location of pain with or after intercourse.
But at nearly all of these sites, how the patients described the pain was very consistent. It was usually described as throbbing, tender, piercing, and often as aching except for pain in the genitals and urethra, where patients gave a wider variety of descriptions. At all those four sites, pains got worse to similar degrees with car rides and before and during menstrual periods, and improved after periods.
There was very little evidence that a pain at one site influenced pain at another: Those who had pain at one site weren't more likely to have pain at another, the kind of pain didn't have anything to do with the location, and the descriptions of pain at two different places were very similar.
That dominance of suprapubic (over the bladder) pain; the consistency of changes at every pain site with the voiding cycle, food and drink, menstrual cycle, and car rides; and the lack of influence of pain at one site over pain at another implies that the pain in IC/PBS is generated from the bladder itself. That also implies that "urethral syndrome" and "vulvodynia" might not be different diseases when patients diagnosed with those also have some urgency, frequency, and suprapubic pain.
Braunstein R, Shapiro E, Kaye J, Moldwin R. The Role of Cystoscopy in the Diagnosis of Hunner's Ulcer Disease. J Urol. 2008 Aug 14. [Epub ahead of print]
Hunner's lesions or ulcers in the bladder are the classic sign of IC that can be seen on the bladder wall during cystoscopy. For Hunner's IC, the treatment options are different: removing those lesions with cautery or laser can provide great relief. Some researchers have said it is possible to tell who has the ulcers without doing a cystoscopy with hydrodistention under anesthesia. If that's correct, then patients who didn't need to wouldn't have to undergo the procedure. But these researchers couldn't separate the two groups of patients based on symptoms. The investigators compared symptoms in the records of 86 patients with Hunner's ulcers with symptoms of 137 who had no Hunner's ulcers. Interestingly, the ratios of women to men were very different in the two groups: 6:1 for patients with no Hunner's ulcers and 3:1 for those who had them. Patients with Hunner's ulcers were much older on average (60) than those without (47), but those with Hunner's ulcers had not had their disease longer. There were also no significant differences between the groups in their history of having blood in the urine, having some other disease or condition, or in their levels of pain. Finding out whether you really do have Hunner's ulcers requires a cystoscopy and hydrodistention, the investigators concluded.
Yoshiyama M, Kobayashi H, Araki I, Du S, Zakoji H, Takeda M. Sex-related differences in activity of lower urinary tract in response to intravesical acid irritation in decerebrate unanesthetized mice. Am J Physiol Regul Integr Comp Physiol. 2008 Jul 23. [Epub ahead of print]
In this study of bladder irritation in animals, males and females showed markedly different symptoms in response to the same irritation. In general, female bladders were more sensitive to acid irritation, whereas the male urethra was more irritable than the female urethra. In response to the irritation, both sexes had more bladder spasms, but females' bladder contractions were much more frequent. Irritation reduced the maximum pressure for voiding but had no effect on the threshold of bladder pressure that caused a voiding contraction in females. In males, however, the maximum voiding pressure didn't change, but the threshold of pressure that prompted a voiding contraction increased. Male mice also had persistent dribbling of fluid after voiding, whereas females did not. Finding out why males and females respond differently to bladder irritation might reveal more about the nature of IC.
Clemens JQ, Brown SO, Calhoun EA. Mental Health Diagnoses in Patients With Interstitial Cystitis/Painful Bladder Syndrome and Chronic Prostatitis/Chronic Pelvic Pain Syndrome: A Case/Control Study. J Urol. 2008 Aug 14. [Epub ahead of print]
This study found fairly low rates of mental health (depression and panic) disorders in men with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) and women with IC/painful bladder syndrome (PBS), in contrast with other studies showing a high rate of depression. Patients did, however, have higher rates of problems than their healthy counterparts. Based on their answers on the Patient Health Questionnaire, 23 percent of women with IC/PBS did compared with 3 percent of controls, and 13 percent of 174 men with CP/CPPS had disorders compared with 4 percent of controls. The only things that correlated well with having disorders were simply the fact of having IC/PBS or CP/CPPS and having an income higher than $50,000. Age, gender, race/ethnicity, and education did not correlate with having a disorder. Eighteen percent of the men and 37 percent of the women took medications for anxiety, depression, or stress compared with 7 percent of the control men and 13 percent of the control women.
Zaslau S, Riggs DR, Perlmutter AE, Jackson BJ, Osborne J, Kandzari SJ. Sexual dysfunction in patients with painful bladder syndrome is age related and progressive. Can J Urol. 2008 Aug;15(4):4158-62.
These investigators analyzed results of a standard sexual function questionnaire given to women who met criteria for painful bladder syndrome (PBS). Sexual function was worse in PBS patients than in healthy women and it was also worse in those older than 50 than in those under 30. The older PBS patients had more problems with arousal, lubrication, and pain. Pain scores were worse in every successive age group. Pain was the most significant sexual dysfunction in these patients.
Chaban VV. Visceral sensory neurons that innervate both uterus and colon express nociceptive TRPv1 and P2X3 receptors in rats. Ethn Dis. 2008 Spring;18(2 Suppl 2):S2-20-4.
Because a number of studies now indicate that nerves carrying signals from different pelvic organs get sensitized through "crosstalk," these researchers looked for two different kinds of pain-sensing receptors on sensory nerves in two different pelvic organs-the colon and uterus. One is the vanilloid or TRPV1 receptor that is sensitive to capsaicin, the hot pepper substance. The other is a purinergic or P2X3 receptor that is sensitive to ATP, which has been implicated in transmitting pain signals in the bladder. The investigators injected fluorescent dye into the colon and uterus and then looked for the dye in nerve roots at the spine, where the nerves are thought to communicate with each other. From 10 to 15 percent of the dyed neurons from the lowest lumbar to the first sacral nerve roots served both organs. They also had both receptors. This integration of sensation from different pelvic organs at the spine may underlie the co-occurrence of pelvic pain syndromes, concluded the researchers.
McCarberg BH, Nicholson BD, Todd KH, Palmer T, Penles L. The impact of pain on quality of life and the unmet needs of pain management: results from pain sufferers and physicians participating in an Internet survey. Am J Ther. 2008 Jul-Aug;15(4):312-20.
This extensive survey and its analysis showed that, despite pain's high prevalence, many patients suffer with unrelieved or undertreated pain and that it has a huge impact on daily activities and quality of life for most sufferers. This team surveyed both pain sufferers and physicians. Of the 22,018 nonphysicians who responded to e-mail invitations, 606 met the survey's criteria as pain sufferers. Of these, 359 had moderate to moderately severe chronic pain and 247 had moderate to moderately severe acute pain. Physicians who responded included 241 specialists (orthopedic or general surgeons, pain specialists, or anesthesiologists), 125 primary care doctors, and 126 emergency medicine physicians. Many chronic pain sufferers reported that pain had deleterious effects on their mental health, employment status, sleep, and personal relationships. Most physicians did recognize the impact of pain on patient quality of life and that there were unmet needs in pain management, including inadequate pain control, end-of-dose pain, and side effects associated with increased dosing, which influenced their choice of pain medication. The authors encouraged effective communication between physicians and patients to not only improve overall pain management but also to establish shared treatment goals.
Lynch ME. The pharmacotherapy of chronic pain. Rheum Dis Clin North Am. 2008 May;34(2):369-85.
In this article, these Canadian pain management specialists outline what they believe the best evidence supports as the approach to chronic pain. (This is aimed mainly at rheumatic diseases, which include fibromyalgia.) The usual approach is to start with a nonopioid painkiller for mild to moderate pain. If this is inadequate or patients don't tolerate it well and if sleep loss is also a concern, then it is reasonable to add an antidepressant with painkilling qualities. If there is a component of nerve pain or fibromyalgia, then they suggest trying one of the gabapentinoids, such as gabapentin (Neurontin) or pregabalin (Lyrica). When that approach is inadequate, then they suggest adding an opioid analgesic. But for moderate to severe pain, they would start a trial of a chronic opioid earlier. Cannabinoids and topicals may also be appropriate as single agents or in combination, they said.
Chu PS, Ma WK, Wong SC, Chu RW, Cheng CH, Wong S, Tse JM, Lau FL, Yiu MK, Man CW. The destruction of the lower urinary tract by ketamine abuse: a new syndrome? BJU Int. 2008 Aug 1. [Epub ahead of print]
This article by urologists in Hong Kong reports on the destructive effect of ketamine abuse on the urinary tract. Abusers have some of the same symptoms as IC, but others as well. Inflammation of the bladder lining, a contract bladder, frequency, and urgency were among the symptoms. Many patients also had blood in the urine, reflux of urine from the bladder, and fluid enlargement of the kidney. Although it doesn't address the effects of temporary, low dose, and legitimate use of this painkiller, this article does sound a note of caution on the use of this painkiller in IC patients. The process in abusers may hold some clues to the process in IC, but the parallels emphasize how serious and physiologically destructive IC is in severe cases.
Song Y, Zhang W, Xu B, Hao L, Song J. Prevalence and correlates of painful bladder syndrome symptoms in Fuzhou Chinese women. Neurourol Urodyn. 2008 Jul 31. [Epub ahead of print]
These gynecologists in Fuzhou, China, randomly surveyed 6,066 women aged 20 and older and were able to use information from 4,684 to estimate symptoms of painful bladder syndrome (PBS). Based on their answers on the Bristol Female Lower Urinary Tract Symptoms questionnaire, the investigators estimated that the prevalence of PBS was 0.98 percent, a rate that is similar to recent epidemiologic studies in the West. Having had more than two children, having diabetes, and smoking correlated with symptoms. Smoking was also correlated with PBS in a US study. Because China's one-child policy was instituted in 1979, women with more than two children are likely to be older.
Pitts MK, Ferris JA, Smith AM, Shelley JM, Richters J. Prevalence and correlates of three types of pelvic pain in a nationally representative sample of Australian women. Med J Aust. 2008 Aug 4;189(3):138-43.
This survey of adult premenopausal Australian women showed that pelvic pain is common. Among the 1,983 women aged 15 to 49 who were still menstruating and sexually active, 72 percent had painful periods, 14 percent had pain with intercourse, and 22 percent had other kinds of chronic pelvic pain. Only 23 percent reported no pelvic pain of any kind. The study did not distinguish IC from other chronic pelvic pain conditions, which may indicate that IC is still not well known or well recognized in the general medical community in Australia. It may also imply that many physicians think of chronic pelvic pain only as gynecologic.
Seth A, Teichman JM. What's new in the diagnosis and management of painful bladder syndrome/interstitial cystitis? Curr Urol Rep. 2008 Sep;9(5):349-57.
In this review article these authors outline their views on some of the controversies in IC/PBS and on what's new. They note that looking at the bladder with cystoscopy and hydrodistention doesn't make a definite diagnosis of IC, and they note that tests for antiproliferative factor and Tamm-Horsfall protein may prove worthwhile. Evidence supports amitriptyline (Elavil) and pentosan polysulfate (Elmiron) as oral drugs, and the authors believe that starting it early and using it for a minimum of six months give the best results. Immune system modifying drugs have shown promise but have problems with side effects. Alkalinized lidocaine and heparin may be effective, and we will know more when randomized trials are complete. Intravesical botulinum toxin A (Botox), bacille Calmette-Guérin (BCG), and sacral neuromodulation may have a role in certain patients.
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Your generosity allows us to continue to serve the more than one million people with IC.
Every day, people with IC tell us that the ICA is their lifeline -- often their only place to turn for critically needed support and information.
The ICA needs your help to continue to serve the needs the IC patients, healthcare providers, and researchers.
To make your donation, please click here.
or call 800-HELP ICA (800-435-7422)
The Interstitial Cystitis Association is an independent, registered nonprofit organization that relies upon private donations to fund its programs (including its own research program), services and distribution of educational materials. Your contributions are tax-deductible to the fullest extent allowed by law. |
Knowledge is a powerful tool. The ICA offers an array of educational materials to help you in educating your IC patients.
This easy-to-use spiral-bound workbook, written by registered dietitian Julie Beyer, can help you identify your personal food triggers. Provides information on supplements, food intake, voiding diaries, and planning sheets, as well as exercise and stress management.
ORDER NOW
Finally, a Pilates exercise DVD created especially for those suffering with chronic pelvic pain! This is a viewer-customizable, daily workout plan that can be tailored to each individual's different exercise and pain levels.
ORDER NOW
Los Angeles Regional IC Forum Transcript
IC: The Basics and Beyond, presented by Robert Moldwin, MD
20 pages of state-of-the-art IC information
Dr. Moldwin is Associate Professor of Clinical Urology and Director of the Urological Pelvic Pain Center at the Smith Institute for Urology, Long Island Jewish Medical Center (LIJMC), in New Hyde Park, NY. A member of the ICA's Medical Advisory Board for many years, he wrote the best-selling patient-oriented book entitled The Interstitial Cystitis Survival Guide (New Harbinger Publications), which is available for purchase through the ICA.
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Detroit Regional IC Forum Transcript
IC: Where Are We Now? Where Are We Going? Presented by David Burks, MD, and Two Complementary Therapies for IC/PBS: Posterior Tibial Nerve Stimulation and Guided Imagery, presented by Donna Carrico, RN, CNP, MS
28 pages of IC information from TWO Detroit-area IC specialists
A member of the ICA's Medical Advisory Board, David Burks, MD, is also on the Board of Governors of the Henry Ford Medical Group and has a very busy voiding dysfunction practice. Donna J. Carrico, RN, CNP, MS, is the Program Coordinator and a health care provider with the WISH Program (Beaumont Women's Initiative for Pelvic Pain and Sexual Health) in Detroit. She has 25 years of experience in all areas of women's health.
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This is a more than two-hour, two-disk detailed presentation on the latest IC treatments and pain management techniques featuring renowned IC experts and ICA Medical Advisory Board members Robert Moldwin, MD, and Daniel Brookoff, MD, PhD. Taped in the fall of 2006.
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 Living with IC and related conditions can be a challenge. This new booklet in our Because you Care series is designed to help people with IC meet the challenges of chronic illness and find validation, comfort, and relief. We have found that it is very helpful for people with IC to become actively involved in the management of their condition and to be strong advocates for themselves. After all, no one knows as well as you do what it is like to BE you!
Topics covered include medication issues, employment issues, educational issues, insurance issues, disability issues, and three chapters focusing on navigating daily challenges in your own life.
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 A collection of our most popular and inspiring patient stories!
This book contains 100-plus pages of inspirational and moving profiles of people living with IC, including portraits of men, women, and children from diverse cultural, ethnic, and philosophical backgrounds.
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 A booklet about sexual intimacy issues and challenges written from the patient's perspective! Written especially for people with IC and their intimate partners, this 45-page book offers insight into how IC affects sexuality, as well as practical coping strategies for achieving and maintaining rewarding intimate relationships while living with IC.
The Because You Care booklet also covers the 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.
ORDER NOW
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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.
Available in both DVD and VHS formats: ORDER NOW or as a written transcript. ORDER NOW
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AUGS 29th Annual Scientific Meeting
Sheraton Chicago Hotel & Towers
301 East North Water Street
Chicago, Illinois, 60611
1.877.242.2558
www.sheratonchicago.com
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2008 Pelvic Health Patient Education Day
Holiday Inn near The Galleria
www.pure-hope.org
*Look for free issues of the ICA Update magazine!
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2008 SUNA Annual Conference
Philadelphia Convention Center
www.suna.org/cgi-bin/WebObjects/SUNAMain.woa/wa/confReg?mtg_id=SUN0810&sfm=Y
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National Association of Nurse Practitioners in Women's Health
Seattle Sheraton & Seattle Convention Center
Seattle, Washington
https://www.npwh.org/i4a/ams/publicLogin.cfm
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International Pelvic Pain Society
Annual Scientific Meeting 2008
Buena Vista Palace Hotel & Spa
Buena Vista, Florida
http://www.pelvicpain.org/meetings/
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International Pelvic Pain Society
9th International IACFS/ME Conference
Developing Interdisciplinary Collaborations: Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses
Peppermill Resort Hotel, Reno, Nevada, USA |
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Minute Maid Low Acid Orange Juice: This product can be found in the frozen food section of most supermarkets, alongside Minute Maid’s other juice products. Although it is reduced in acid, some IC patients may find that they need to dilute the concentrate with more water and/or add some Prelief to lessen the possibility of flaring IC symptoms.
To find out more please visitwww.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 visit www.wfds.com.
Teeccino:Teeccino Caffeine-free Herbal Coffee is a blend of herbs, grains, fruits, and nuts that are roasted and ground to brew and taste just like coffee. Coffee lovers are attracted to Teeccino's full-bodied, dark roasted flavor and its nutritious health benefits. Available in seven delicious flavors including Vanilla Nut, Java, Mocha, and Hazelnut. With 65 mg of natural potassium in each cup, Teeccino is alkaline and helps reduce acidity.
For more information please visit www.teeccino.com.
Cysta-Q: Farr Labs, LLC, has two formulas that are designed for people with IC and nonbacterial prostatitis: Cysta-Q and Prosta-Q. Cysta-Q is a dietary supplement that targets the urinary frequency, urgency, and pain of IC. Cysta-Q consists of a (patent-pending) extracted blend of the quercetin, bromelain, papain, cranberry powder (non-acidic), skullcap, wood betony, passionflower, and valerian. Farr Labs also distributes Prosta-Q, an over-the-counter quercetin dietary supplement that promotes and maintains prostate health.
Published findings of clinical trials have shown that both Cysta-Q and Prosta-Q significantly reduce symptoms of IC and chronic pelvic pain syndrome in men.
To find out more visit www.cystaq.com or call 1-877-284-3976.
CystoProtek: A patent-protected natural oral dietary supplement in softgel capsule form, has been clinically demonstrated to relieve symptoms associated with interstitial cystitis. The anti-inflammatory properties of the chondroitin sulfate, quercetin and rutin in CystoProtek’s unique natural formula reduce bladder damage and pain, while its glucosamine sulfate, chondroitin sulfate and hyaluronate sodium help replenish the damaged glycosaminoglycan (GAG) protective layer in the bladder.
CystoProtek’s beneficial effects in interstitial cystitis are believed to be due to this dual action. In two clinical studies, CystoProtek was well tolerated by patients and reported to be effective in reducing the pain and improving overall symptoms in many women with interstitial cystitis. To find out more about CystoProtek please visit http://www.cysto-protek.com/ or call 888-317-0001.
Desert Harvest Aloe Vera: Aloe vera is a powerful anti-inflammatory and pain reliever. Desert Harvest makes a very concentrated form of aloe vera just for IC patients. A small clinical trial of Desert Harvest whole-leaf aloe vera capsules showed significant reduction in the symptoms of IC. Desert Harvest Aloe Vera’s active ingredient is a polysaccharide, which researchers believe may form an artificial GAG layer in the bladder.
For more information and a free sample please visit www.desertharvest.com or call 1-800-222-3901.
Prelief: AkPharma, Inc. makes Prelief, a dietary supplement containing calcium glycerophosphate, has been shown to help reduce bladder pain and urinary urgency when used with acidic foods and beverages.
For more information about Prelief, please visit www.prelief.com or call (800) 994-4711.
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.
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Disclaimer: The ICA does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication.
© 2008 The Interstitial Cystitis Association. All Rights Reserved.
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