Interstitial Cystitis Network Newsletter
August 2002

Advertisement:
Our newsletter sponsors, AKPharma (makers of Prelief), and Farr Laboratories (makers of CystaQ), underwrite this e-newsletter and help to make it available, at no cost, to IC patients and providers in more than 50 countries. They have been enthusiastic supporters of the IC movement, our web site, and understand the critical need for IC support. Best of all, their products are vital options for IC patients to explore.
Prelief reduces the acid in foods, thus making it possible for IC (and IBS) patients to eat a more balanced diet. Research presented at the 2001 AUA conference demonstrates that CystaQ has been effective at reducing the symptoms of IC. It is a promising new treatment option.

In this issue:
  • Meet the IC Experts - Lecture Transcripts Now Available - Aloe & IC, Sexuality & IC
  • International News: Report from AUA 2002, An Urgent Need for Affordable Medications, Dr. Nagendra Mishra Conducts Int'l Physician Survey, IICPN Featured in Renal Medicine News, New National Organization to begin in Mexico, German Book on IC Now Available
  • Research News & Update: Update on DMSO, IC and Children, IC & Prostatitis - One and the Same?, Chronic Pelvic Pain & IC, Is IC an Infectious Disease, Pentosan Polysulfate, Participate in a WVU IC Research Study Online, Univ. of Maryland Still Seeking Volunteers for BCG study, Other Articles of Interest
  • Physician & Clinic Resources: Cystoscopy Interactive On-line, Upcoming Conferences & Events
  • Featured Writers & Columnists: Fresh Tastes by Beverly Laumann, IC Lifestyles by Gaye & Andrew Sandler, Diary of an IC'er by Mary Fitzpatrick
  • Self Help Tip of the Month: Reducing Skin Irritation & Urine Burn
  • ICN Projects & Updates: Patient Handbook Now Translatable Into 8 Languages, IC Patient Stories
    Research Library Update, Canada IC & OAB Resource Center, ICN Chat Rooms Upgraded.. Finally!!!
  • IC Support Opportunities: New "Cistitis Intersticial En Espanol" Message Board, Online Support Meeting Schedule, New USA Support Groups
  • New IC Resources in the ICN Shop: Introducing the Travel John

Meet the IC Expert Guest Lectures
Primary URL: http://www.ic-network.com/guestlectures/
Begun in 1998, the ICN Meet the IC Expert Guest Lecture Series is the only live and free lecture series available and serves to unite patients and providers throughout the world in their joint quest for new research and treatment strategies. We are now expanding our guest lecture series to include printed interviews with select IC researchers who are unable to appear live, as well as our Q&A with an MD series. These services are free for all, generously cosponsored by (Makers of Prelief), Farr Laboratories (Makers of CystaQ) and other selected companies.

In late May 2002, Pat Criscito, President and CEO of Desert Harvest, discussed their past, present and planned future research studies using aloe as a treatment for IC. Desert Harvest discovered the connection between concentrated aloe vera and interstitial cystitis. Since 1993, they have worked with more than 1,700 IC patients. New research studies offer promising results.

Dr. Stanley Zaslau, Co-Director of the Center of Sexual and Voiding Dysfunction (West Virginia University School of Medicine), appeared in June 2002 to discuss the delicate subject of sexuality and IC. One of the most popular chat topics on the ICN and in support groups around the world, the impact of IC on relationships and sexuality can be profound. Young and old, single or married, an IC patient can't help but be concerned. Yet, couples throughout the world survive and thrive despite the fact that one partner has IC. For those patients who do have discomfort (pain, irritation, muscle spasms) with sex, we hope that this transcript will confirm your feelings, provide useful sexual self-help strategies and, above all, give you a resource that you can share with your partner.

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(B) International News
Primary URL: http://www.interstitial-cystitis.org/
The ICN is pleased to be a founding member of the International IC Patient Network. Founded in 1999, its goal is to bring national IC organizations, researchers and patients together in a collaborative team to discuss the problems that IC sufferers face and to propose joint programs and solutions. When the cure for IC is found, it could be in a lab in England, Finland, Italy, India, South Africa, or Japan. It could also come from an international project. Therefore, it is vital that we nurture discussion and collaboration among all who are interested in furthering IC research and to extend our hands in respect and friendship across national borders. IC is now much bigger than one country or one association. Collaboration is essential to the IC cause.

AMERICAN UROLOGICAL ASSOCIATION 2002 CONFERENCE
For the first time in the history of the AUA, IC national patient groups united to present a solid front via the IICPN web booth, including: Anthony Walker (United Kingdom), Jane Meijlink (Netherlands), Barbara Hensen (Germany), Sandy McNicol (Canada), and Jill Osborne (USA). Our discussions with doctors from dozens of countries relayed what we experienced earlier in the year at EAU, doctors are desperate for even the most basic information on IC and treatments. Read Jane Meijlink's (Netherlands), inside review of this years conference, including courses presented on IC, overactive bladder, pelvic pain and the history of IC.

AN URGENT NEED FOR AFFORDABLE MEDICATIONS
In conjunction with the activities above, the IICPN conducted a survey of physicians with respect to their current clinical needs. For those Americans who struggle with the costs of medication, imagine what it must be like to live in a country where a day's worth of Elmiron might be a week's or a month's pay. We have never seen more completely and tragically the impact of the pharmaceutical industry in offering medications so greatly overpriced that the majority of the worlds patients (and physicians) can't afford them. Kudos to C. Lowell Parsons, who addressed this in his course on interstitial cystitis emphasizing therapies that are more affordable in addition to traditional brand names. Patients in the USA may be eligible for various drug assistance programs. The ICN also maintains an international drug glossary.

INTERNATIONAL SURVEY
The quest for new diagnostic criteria for IC is continuing with the assistance of Dr. Nagendra Mishra (India), who is conducting an international survey of physicians via the IICPN web site. This survey is designed for physicians, researchers and selected support group leaders. (It is not for patients. We will have a more detailed patient survey in the next few months.) We asking patients from around the world to help us gather data by printing out the survey and giving it to their physicians. Survey responses are urgently needed. Please help us gather data.

IICPN FEATURED IN RENAL MEDICINE NEWS
Released this month, the inaugural issue of a new journal, Renal Medicine News, featured a story on the IICPN and our need for new diagnostic criteria!

NEW IC NATIONAL ORGANIZATION TO START IN MEXICO
Several new patients in countries around the world have expressed interest in starting national support groups since our last newsletter. Patients in Mexico can now contact Florentina Ferreyra (flore@bcomx.com) for information! If you live in a country with no support groups or national association and would like to start one, or if you are a provider who would like to bring IC resources, training or a conference to your region, please contact the IICPN at: info@interstitial-cystitis.org. We would love to share our resources with you and to learn about your experience with IC.

GERMAN BOOK ON IC NOW AVAILABLE
The ICA-Deutschland has recently published a new research journal on IC. With chapters contributed by various researchers throughout Europe, this is a significant contribution to the IC community. For additional information and purchasing information, please visit their web site.

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(C) Research News & Update
Primary Url: http://www.ic-network.com/library/
Every month, our knowlege of IC expands as new research studies are released. Fifteen years ago, very little was available. Today, a search of the medical journals will find thousands of articles on IC. We are pleased to feature some the latest IC studies available.

AUA 2002 - UPDATE ON DMSO
Research now suggests that DMSO has the potential of causing damage to the muscle of the bladder when used in higher dosages. Lower dosages are recommended.

Presented at the 2002 AUA conference "DMSO - Does it change functional properties in the bladder wall" (Diethild Melchior*, C Subah Packer, Tomalyn C Johnson, Martin Kaefer, Indianapolis, IN) tested various concentrations of DMSO on strips of bladder muscle to try to determine what, if anything, the DMSO did to muscle. They found that DMSO triggered intense muscle contractions and, at doses higher than a 30% solution, caused what appeared to be long-lasting contractions that could be irreversible. Since the normal dosage used for humans is 50%, researchers suggested that the dosage be reduced to, at most, 25% to avoid any possibility of muscle damage.

This study, by far, elicited the most animated discussions of the IC research studies that day. One physician from the Cleveland Clinic said that his clinic no longer used DMSO and that they felt that of the patients who required bladder removal, many had DMSO induced damage to the bladder from long term use. This was a very bold statement for the conference. Yet, other doctors suggested that the study was "amateurish." They felt that testing bladder muscle was not an accurate assessment of how a whole bladder would respond to DMSO. They suggested that further studies were needed before they would stop using DMSO.

If there was consensus in this discussion, it was that DMSO should only be used in one or two series of treatments and that further long term use, particularly if the patient had little response to prior treatments, would likely be ineffective as well as cause potential damage to the bladder muscle. With respect to the dosage of DMSO, many commented that they already used DMSO cocktails which reduced the overall dosage to around 35% rather than 50%. This new research suggests that a dosage of 25% seems to be prudent.

IC IN CHILDREN
One consistent problem in the diagnostic criteria of IC is that it typically leads to the exclusion of children under the age of 18. Yet, there is no doubt that some children can experience IC, often at a very young age. In the latest edition of the Int Urogynecol J Pelvic Floor Dysfunction, researchers in England document the first reported case of interstitial cystitis and vulvar vestibulitis in a four year old girl.

Selo-Ojeme DO, Paranjothy S, Onwude JL, Interstitial Cystitis Coexisting with Vulvar Vestibulitis in a 4-year-old Girl. Int Urogynecol J Pelvic Floor Dysfunct. 2002;13(4):261-2.

IC AND PROSTATITIS: ONE AND THE SAME?
C. Lowell Parsons (UCSD) believes that prostatitis and interstitial cystitis are manifestations of a "single pathophysiological process in the lower urinary tract" and suggests that IC and prostatitis be called "Lower Urinary Dysfunctional Epithelium (LUDE)." Why? In this months article "Intravesical potassium sensitivity in patients with prostatitis", more than 80% of prostatitis patients had positive responses to the potassium sensitivity test now used in the diagnostic process for IC.

Parsons CL, Albo M. Intravesical potassium sensitivity in patients with prostatitis. J Urol. 2002 Sep;168(3):1054-7.

CHRONIC PELVIC PAIN & IC
Pelvic pain is just one of many symptoms of IC. Yet, both men and women face difficulty receiving a diagnosis. Women with pelvic pain who visit their OB-GYN, may not be properly assessed for IC and some have even had hysterectomies only to discover that their pain originated in their bladder. Brown University in Maryland conducted a study of women with pelvic pain using the new Interstitial Cystitis Symptom Index and Problem Index Survey. Their research found that 38% of women complaining of pelvic pain were diagnosed with IC. Robert Moldwin, MD, in his article "Similarities between interstitial cystitis and male chronic pelvic pain syndrome" suggests that IC and CPPS are likely "different manifestations of the same disease process."

Clemons JL, Arya LA, Myers DL. Diagnosing interstitial cystitis in women with chronic pelvic pain.
Obstet Gynecol. 2002 Aug;100(2):337-41.

Moldwin RM., Similarities between interstitial cystitis and male chronic pelvic pain syndrome. Curr Urol Rep 2002 Aug;3(4):313-8

IS IC AN INFECTIOUS DISEASE?
One of the hot debates in the IC community in the past ten years is whether IC is infectious in origin. The ever impressive research team at the University of Maryland, published the results of their extensive research studies looking for an "infectious agent." In fact, while they didn't find a bacteria, what they found has changed the face of IC research today - a toxic factor in the urine of approximately 95% of IC patients that is made by and inhibits, the normal proliferation of bladder epithelial cells.

Keay SK, Warren JW. Is interstitial cystitis an infectious disease? Int J Antimicrob Agents 2002 Jun;19(6):480-3

PENTOSAN POLYSULFATE
This article documents an unusual side effect to a young woman taking pentosan polysulfate (Elmiron), who experienced serious difficulties with blood coagulation.

Gill S, Naiman SC, Jamal A, Vickars LM. Massive bleeding on a bladder protectant: a case report of pentosan polysulfate sodium-induced coagulopathy. Arch Intern Med 2002 Jul 22;162(14):1644-5

PARTICIPATE IN A WVU IC RESEARCH STUDY ONLINE
The ICN is delighted to assist Dr. Stanley Zaslau (Center for Sexual and Voiding Dysfunction at West Virginia University) in conducting a research survey designed to study interstitial cystitis and sexual dysfunction. The information gained from this survey will aid in the diagnosis and treatment of sexual dysfunction as it relates to the patient with Interstitial Cystitis. Please help us by participating in the survey today!

UNIVERSITY OF MARYLAND SEEKING VOLUNTEERS FOR CLINICAL TRIAL
(Submitted by UM staff) We are a member of the Interstitial Cystitis Clinical Trials Group sponsored by the National Institutes of Health. We are beginning our second randomized clinical trial which will evaluate the efficacy of intravesical Bacillus Calmette-Guerin (BCG) in patients with interstitial cystitis, as compared to an intravesical placebo.

BCG, a weakened bacteria related to a type of tuberculosis bacteria which has been used for most of the 20th century in millions of people as a vaccine against tuberculosis, is a novel therapy for the treatment of IC. Although this therapy has been used effectively in the treatment of bladder cancer, its exact mechanism of action is unknown. Preliminary studies evaluating its effect in the treatment of IC have shown promising results. Confirmation of these results require further clinical trial investigation; therefore, we will be examining BCG in a full scale clinical trial involving 260 participants across the country.

You may be interested to know that all study medications and study visits are free and that we will be examining the role of certain urine markers to predict and to monitor response to treatments. If you have an interest in furthering the understanding of interstitial cystitis, consider participation in this study. If you do so, you will be among the first to be given the opportunity to try new and promising agents for IC in subsequent studies.

If you are interested in discussing this further, please contact Linda Horne or Theresa Jackson at: 1-877-STUDY IC (1-877-788-3942) or e-mail: studyic@medicine.umaryland.edu. For more information on the ICCTG, please visit the ICN Clinical Trials page.

OTHER ARTICLES OF INTEREST

  • MaLossi J, Chai TC. Interstitial cystitis: diagnosis and treatment options. Curr Womens Health Rep 2002 Aug;2(4):298-304
  • Leppilahti M, Hellstrom P, Tammela TL. Effect of diagnostic hydrodistension and four intravesical hyaluronic acid instillations on bladder ICAM-1 intensity and association of ICAM-1 intensity with clinical response in patients with interstitial cystitis. Urology. 2002 Jul;60(1):46-51.
  • Wammack R, Remzi M, Seitz C, Djavan B, Marberger M. Efficacy of oral doxepin and piroxicam treatment for interstitial cystitis. Eur Urol. 2002 Jun;41(6):596-601.
  • Oberpenning F, van Ophoven A, Hertle L. Interstitial cystitis: an update. Curr Opin Urol. 2002 Jul;12(4):321-32. Review.
  • Lentz GM, Bavendam T, Stenchever MA, Miller JL, Smalldridge J. Hormonal manipulation in women with chronic, cyclic irritable bladder symptoms and pelvic pain. Am J Obstet Gynecol. 2002 Jun;186(6):1268-71; discussion 1271-3.
  • Sadhukhan PC, Tchetgen MB, Rackley RR, Vasavada SP, Liou L, Bandyopadhyay SK. Sodium pentosan polysulfate reduces urothelial responses to inflammatory stimuli via an indirect mechanism. J Urol. 2002 Jul;168(1):289-92.
  • Leppilahti M, Tammela TL, Huhtala H, Auvinen A. Prevalence of symptoms related to interstitial cystitis in women: a population based study in Finland. J Urol. 2002 Jul;168(1):139-43.
  • Al-Hadithi H, Tincello DG, Vince GS, Richmond DH. Leukocyte populations in interstitial cystitis and idiopathic reduced bladder storage. Urology. 2002 Jun;59(6):851-5.

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(D) Medical Care Provider Resources
http://www.ic-network.com/md/

CYSTOSCOPY TUTORIAL NOW ON-LINE
http://www.nlm.nih.gov/medlineplus/bladderdiseases.html
MedlinePlus now offers many new educational resources online for patients, including an interactive video and audio tutorial on cystoscopies and IVP's. Please note that the cystoscopy video is targeted for men, rather than women. However, it is still relevant to both. Pictures are explicit

LOCATING A MEDICAL CARE PROVIDER
"I am an Italian woman of your age. You literally changed my life as, suspecting having IC last spring I was wandering from uro to uro in my town getting no answers, till ....I read your international listing of doctors and found a doctor in my country. I traveled to him last June and started a diagnostic path. We are not sure yet if I have an IC (not all tests have been performed yet, he wants to have all possible data for a definite diasgnosis), but he is such a kind, competent, up-to-date, open minded guy. Thanks so much for the time being and God bless the ICN!"
- ICN Visitor, Italy

While we do not make direct referrals, the ICN maintains an extensive and world wide listing of medical care providers interested in treating IC, as well as physical therapists who are interested in treating pelvic floor dysfunction.

USA Physician Listings
International Physician Listings
Pelvic Floor Specialist Listings
Pain Care Specialist Listings
New Submission Form

CONFERENCES & EVENTS
October 12th, 2002 - 3rd Annual Conference - UKICSG - Milton Keynes
Nov 16, 2002 - Annual Patient Congress, Interstitiele Cystitis Patientenvereniging Rotterdam, The Netherlands, language Dutch
March 12-15, 2003 - European Association of Urology - Madrid, Spain
March 29-30, 2003 - IC Int'l Conference - Japan
April 26-30th - American Urology Association - Chicago, USA

Please note that the NIDDK/ICA Bladder Symposium scheduled this Fall has been cancelled.

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(E) ICN Featured Writers
The ICN was the first IC on-line resource to offer free articles to IC patients on-line. Featuring well known authors Beverly Laumann and Gaye & Andrew Sandler, our columns have been reprinted thousands of times by patients, support groups and physicians looking for helpful, useful information.

FRESH TASTES BY BEV
http://www.ic-network.com/bev/


A Bladder Friendly Picnic
Who can resist a picnic the fresh air, with nature and children playing. Bev shares some great and IC friendly ideas that patients have used throughout the summer. Check out her recipe for Southern Herb Fried Chicken & Clam Dip!

Coffee Break News
Earlier this summer, the ICN started selling Euromild low-acid coffees that patients are raving about. In this column, Bev answers every question you could have about coffees and IC, and shares her list of the best low acid coffees now available. (Check the ICN in the near future. We'll be carrying several more brands to sell).

Soy Stories
Three patients with three unique, painful experiences from soy products! From basic breads to tuna fish, soy is a frequent ingredient and well known to irritate some sensitize IC bladders. Bev's own experience with soy milk (and how she figured out that that was the problem) is worth the read!

IC LIFESTYLES BY GAYE & ANDREW SANDLER
http://www.ic-network.com/iclifestyles

Pelvic Floor Dysfunction and Problem Trigger Points in Other Areas of the Body
The Sandler's continue the second half of their series on pelvic floor, discussing the trigger points seen in IC and common prevention strategies. With roughly 70% of IC patients experiencing pelvic floor difficulties (usually a tight, contracted pelvic floor), it makes sense to keep up with the latest information.

IC Overtime - Andrew's Perspective
Husband Andrew shares his thoughts, yet again, of life as the husband of an IC patient. He's honest. He's hopeful. He cares! Thanks Andrew for sharing your intimate thoughts with us.

DIARY OF AN IC'ER
http://www.ic-network.com/icdiaries/


Remembering 9/11 by Mary Fitzpatrick
My first appointment with my current urologist was on September 11, 2001. It had sounded so innocent when I made the appointment in July; just another date on the calendar. I listened to the events in New York and then Washington unfold as I drove in to my appointment in Philadelphia. I had just dropped off my daughter at daycare and turned on Howard Stern (I know I know, but at least I wait until my daughter isn't in the car). In fact, it was probably one of the most accurate eyewitness broadcasts I could have found on the radio. I thought it was a spiel at first but quickly realized it wasn't. One of them said "one plane crashing into a building on a sunny day could be an accident but not two." That was what caught my attention.

The drive was surreal. I briefly considered turning back but having waited two months for this appointment I drove on. This would surprise most people but I'm sure not one of you can't relate to that. I was driving to the city that founded democracy, halfway between New York and DC, and noone could have gotten me to turn around. I was on an always-congested highway, so I had plenty of company in the two lanes headed East. I looked around me and realized I could tell who had the radio on and who didn't by the look on their face and by whether they were chatting happily with their companions or riding together in stunned silence.

The towers must have fallen after I parked and before I went in to my appointment. I don't remember the realization of the fall. When I went in, people on the television were covered with dust. I thought it was a result of the impacts. I can still picture the people in the waiting room. One man said it looked like "The Day After." It wasn't until later that day when I had my daughter safely in my arms that I learned the towers had not just been hit, but destroyed.

Rumors were flying in the doctor's office. "Another plane had crashed in Pennsylvania" (true). "The mayor was closing the bridges" (not true). "The trains were not running" (true). They started canceling appointments. I was one of the last patients seen that day. Despite the chaos, I was given the best care and the most respect and validation from a urologist since my illness had begun. I was given Elmiron, Neurontin, a physical exam (the first since April), and a prescription for physical therapy. These people were taking me seriously! They had a plan! They didn't think I was crazy (yet)!

So, you see, my emotions of that day are all mixed up in my memory. The shock, the grief, the worry for my uncle who works on Wall Street; all these I shared with my fellow Americans. But amidst all this, I finally felt validation, hope, and relief from the care I had received.

It's been a year now since that beautiful, terrible late summer day. The Elmiron has been a miracle for me. I've been able to stop taking Elavil. I feel "normal" a good part of the time. It seems like I have been on a long, long, journey and wtill don't know where I am going.

In some ways, IC has jaded me. In my darkest days of IC, I could not watch situation comedies that I used to love, as they seemed frivolous. I still cannot watch my once beloved ER and see the people who go in, get a diagnosis and a cure, all within an hour. But I still cry at the drop of the hat over the events of that day; all of the events. Although my bladder is coated with Elmiron, it's still raw underneath. It still flares, just like America's emotions that seem to have quieted but flare up when we remember THAT DAY.

THAT DAY was a turning point in more ways than one. While I started my road out of hell and into remission, the country saw evil and had to start it's own journey back from hell. I have found inspiration and strength in a young pregnant widow and firefighters and a mayor and rescue dogs and strong, brave passengers above my home state, and so many, many people. I felt the need to read the stories which were run in the Sunday paper here of each and every local victim and came to realize that I had it so much better than so many of my fellow citizens.

THAT DAY, America learned what those of us with IC already knew. That life is unpredictable. That it can change in an instant. That horrible, terrible things can and do happen to innocent people. That we all have to work together. And that what is important has nothing to do with fame or Hollywood or physical beauty. What counts is family, health, support, and respect. Without these, nothing else matters.

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(F) IC Self Help Tip of the Month - Reducing Skin Irritation & Urine Burn
Primary URL: http://www.ic-network.com/handbook/

(By ICN Founder Jill O.)

Who would have guessed that one of the most effective self help strategies costs under $2.00 and can be found at almost every drug store. What is it? Well, before I spill the beans, let me tell you how I heard about it.

In my early twenties (years before my IC began), I developed vulvodynia - an intense irritation of the vulva and perineum. It felt like a raging yeast infection yet, when I visited my ob-gyn, he never found yeast and usually said that I "looked normal" down there. After several visits, he explained it by saying that I had most sensitive skin that he had ever seen and that I would have to learn to live with it. So, I tried to.

Wearing pants was painful and uncomfortable. When buying jeans, I desperately looked for brands that had longer, non binding crotch seams. I even remember cutting those seams down so that they wouldn't chafe so much. Did anyone else notice just how big those seams were?

It didn't take long for me to figure out that soaps were very irritating, especially bubble baths. Underwear washed in Cheer and most commercial laundry detergents would, within five minutes, cause my vulvodynia to flare. Menstral pads were drying and chafing. Riding a bicycle was impossible. And, as my grandmother passed down to my mother, I learned about wearing "white cotton" underwear, not using soap, using only baking soda in my bath water and wearing stockings rather than pantyhose.

My vulvodynia didn't take kindly to the onset of my IC and, like many of my fellow IC sufferers, I struggled with uncomfortable "urine burn" - a feeling of hot urine burning those tissues. It was with great frustration that I attended a local support group for vulvodynia, squirming on the drive down. They gave me one of the best self-help tips that I have to share with both IC and vulvodynia patients today! Buy a perineal wash bottle from your nearest drug store. (Do not buy any bottles that have chemicals, cleansers or liquid in them. It should be empty). Fill it ONLY with plain, simple water or bottled spring water if you live in an area with hard water. Every time you use the restroom, rinse yourself off thoroughly and pat gently dry. If your urine feels hot, use cooler water to soothe those tender tissues.

It's been about ten years since I started using a wash bottle and my vulvodynia symptoms now rarely appear. It has reduced my incidence of UTI's and has an unexpected benefit of being very soothing after sex. It was $2.00 well spent. If you can't find a bottle locally, we do keep a stock in our office for sale. All patients who purchase a newly diagnosed kit or an ICN subscription receive a bottle with their orders.

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Advertisement:
CystaQ Is A Promising New Option

Introducing CystaQ - A promising new treatment for ICResearch presented at the 2001 American Urological Association conference demonstrates that CystaQ, a quercetin containing complex, is well tolerated and provides significant symptomatic improvement in patients with IC. CystaQ represents an important treatment alternative for patients, particularly before resorting to more drastic measures like surgery. Special offer and discount! Review the latest CystaQ research study.

G. ICN Project Updates

Patient Handbook Now Translatable Into 8 Languages
http://www.ic-network.com/handbook/
It's taken more than a few months to launch a new translation program on our web site. Patients can now translate the ICN Patient Handbook into eight languages, including: Chinese - French - German - Italian - Japanese - Korean - Russian & Spanish. We appreciate all feedback on the new system.

ICN Patient Stories
http://www.ic-network.com/patientstories/
Sometimes the best way to understand how to cope with IC is to read how others have done it. In conjunction with our "success stories" message board, we've added a new section to our site where patients can tell their stories.

Canada IC Resource Center
http://www.canadaic.com
Join a growing group of IC patients from Canada. Now the only national resource for patients in Canada.

ICN Chat Room Now Use Parachat
http://www.ic-network.com/chat/icnchat1.html

The ICN Chat Room has changed! We're now using a totally different server and chat package, called "Parachat" that has dramatically improved our chat room performance. Many of you knew that the old system often took several minutes to load and was abit unpredictable. This new system is much faster, more reliable and easier to enter (Yes, it can take only a few seconds for the chat room to load!). The only difference is that it doesn't support MIRC entries. We hope that more of you can participate in our weekly support chats! It's receiving great reviews.

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(H) IC Support Opportunities
http://www.ic-network.com/chat/
The ICN was first developed by a California IC group leader, Jill Osborne, who was searching for a way to bring support to patients who were too ill to come to local support group meetings. Using AOL, Compuserve and, eventually, this web site, she has offered live, internet support group meetings for the past eight years. On some evenings, you'll find patients from England to Taiwan participating,along with our regular US and Canadian users! The ICN now offer three regular support group meetings a week, led by a compassionate team of support group leaders. We hope that they offer you comfort, encouragement and hope.

NEW SPANISH LANGUAGE MESSAGE BOARD
Some of you have asked for it and we've listened. The ICN Message Boards now include a "Cistitis Intersticial En Espanol" discussion board! We are looking for a spanish speaking volunteer to moderate it. If you are interested, please e-mail donna@ic-network.com

OUR SUPPORT CHAT SCHEDULE
Newbie Chats: Mondays 4PM – 7PM PST, 7PM –10PM EST
Evening Support Chat: Tuesdays 5-7PM PST, 8-10PM EST EST
Evening Support Chat: Wednesday 6-7PM PST
Mens Support Chat: Last Thursday of the Month, 6PM PST

If you are a first time visitor we encourage you to join in on the discussion. We welcome your thoughts, hopes, fears, tears, jokes and the support that you can offer to others living with IC. We invite and encourage a healthy exchange of opinions and disagreements. While we hope that you'll become an active participant and join in our discussions, feel free to simply hang out silently until you feel more comfortable posting a message. To our grizzled veterans, please be sensitive to the needs of newly diagnosed patients. They come into our support chats looking for encouragement and hope and that is exactly how we want them to feel when they leave. Our focus is support. No profanity or cursing please!

NEW USA SUPPORT GROUPS
http://www.ic-network.com/activism/supportgroups.html
The ICN has supported independent IC support groups for many years and are pleased to share their information and listings with our users. In the past three months, seven new support groups have begun operation in the USA, including: Hawaii, California (SF Bay Peninsula), Florida (Hudson), New York (Albany), Ohio (Cincinnati), Utah (Orem) and Washington (Yakima).

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(I) New IC Resources
Primary URL: http://www.ic-network.com/shop/
Your one stop shop for bladder friendly purchases! We've expanded dramatically over the summer, carrying several new supplements, restroom products, heating pads and more! Don't forget that all current ICN subscribers receive a 15% discount on any purchase made in the store.

NOW AVAILABLE!
NEW! Euromild Low Acid Coffees! Now available in regular and decaffeinated!

Heating Pads Microwaveable & ever popular Bodi Heat Heating Pads.

The Travel John! Perfect for patients who drive long distances or worry about restroom access. This purse and briefcase size packet is quickly becoming a best seller. Keep a pack in each car, and one in your purse. Whether you’re in a gross bathroom and don’t want to sit, or want to be discrete in your car, this is the perfect option! Currently in the “sales” section of our shop!

NEW! Are you struggling with dry, sensitive skin? We've found a new lotion "Kokum Butter Body Balm" that is soothing, gentle and long lasting!

Are you a newly diagnosed patient looking for the best IC books & materials? Our Newly Diagnosed Kit includes the first three books listed below, as well as a video and a variety of samples. It is only $58 for all (ICN subscribers can save $8.00 off the list price)! Order it on-line today!  We usually ship within 48 hours.

NEW! We've added Potentials Unlimited audiotapes to our store for patients who are struggling with pain control, insomnia, relaxation. Other titles include: Be Positive, Loneliness, Operations Before and After, Self Healing. Created by Barry Konicov.

NEW TO THE ICN!
NEW! Algonot Plus - Developed by Dr. Theoharis Theoharides, this supplement is one of only a few (Prelief, CystaQ and the aloe below) that show effectiveness in reducing the symptoms of IC.
NEW! Desert Harvest Aloe

RECOMMENDED BOOKS
The Interstitial Cystitis Survival Guide by R. Moldwin
Patient to Patient: Managing IC and Related Conditions by Gaye & Andrew Sandler
A Taste of the Good Life: A Cookbook for an IC Diet by B. Laumann (1998)
Nolo’s Guide to Social Security Disability
The Couples Survival Workbook
Breaking the Bonds of IBS by Barbara Bolen, Ph.D. (2000)
The Chronic Pain Control Workbook by Catalano & Hardin (1996)
Relaxation & Stress Reduction Workbook, 5th ed. (2000)
Living Well With A Hidden Disability
Stop the Anger Now
Self Nourishment Companion
Shy Bladder Syndrome
NEW! Hypnotize Yourself Out of Pain
NEW! The Vulvodynia Survival Guide

The Interstitial Cystitis Network, the largest free archive of IC information in the world, is made possible by subscribers, advertisers and purchases via the ICN Shop. Rather than ask for a membership fee up front to receive this newsletter (by e-mail), participate in our support groups and to purchase materials, we want you to use our web site and get the support you need. If, over the long term, you find that we have helped you, please support our work by becoming an ICN subscriber.

Jill Osborne, Founder & Editor
Interstitial Cystitis Network
5636 Del Monte Court
Santa Rosa, CA 95409
(707)538-9442 - Voice
(707)538-9444 - FAX
E-mail: jill@ic-network.com

"I believe that people of gentleness and caring can change the world. One unseen, unsung, un-rewarded kindness at a time." - Author unknown.

The information in the IC Network is provided with the understanding that the ICN (staff, volunteers, users, columnists) are not rendering medical services. Information found in text, e-mail, message boards, chat rooms are not medical recommendations nor should they replace necessary "face to face" consultations with a qualified medical professional.