IC Optimist Fall 05 - Interstitial Cystitis Network

The IC Optimistpublished by the Interstitial Cystitis Network • volume 7, issue 1 • Spring 2010A NaturalApproach toIC TreatmentAn Interviewwith Diana BradyChronicPelvic PainConnectingthe DotsHow DoesYour GardenGrow?Soy and ICThree PatientStoriesDepartmentsThe Latest IC Research • Book Review • Clinical Trial News • EditorialSelf-Help Tip of the Month • DMSO Safety Alert • Fresh Tastes by Bev Laumann

c o n t e n t s4 ICN Editorial: If Nothing EverChanged, There’d Be No Butterflies6 A Natural Approach to IC Treatment:An Interview with Diana Brady,Author of IC Naturally9 Chronic Pelvic Pain:Connecting the Dots11 Consumer Alert: Do You Know WhereYour DMSO is Coming From?13 The Latest IC Research15 Clinical Trial Announcement16 New Women’s Urology Centerin Michigan!17 Self-Help Tip of the Month:Don’t Be Shy About Your Symptoms19 How Does Your Garden Grow?21 Fresh Tastes with Bev LaumannSoy and IC: Three Patient Stories25 Book Review: IC Naturally26 What’s New in the ICN Shop?Copyright © 2010. Any reproduction is prohibited without prior writtenpermission from the ICN.Disclaimer: The Interstitial Cystitis Network website and publications arefor informational purposes only. The IC Network is not a medical authoritynor do we provide any medical advice. Nothing contained in this publicationshould be considered medical advice and should not be relied uponas a substitute for consultation with a qualified medical professional. Westrongly recommend that you discuss your medical care and treatmentswith your personal medical care provider. Only that medical professionalcan, and should, give you medical advice.Opinions expressed in articles are those of the authors and do notnecessarily reflect those of the ICN or its editorial board. The ICNassumes no liability for any material published herein.THE IC OPTIMIST • SPRING 10 • 3

ICN EditorialIf Nothing EverChanged, There’dBe No Butterfliesby Jill Osborne, MAWhy is it that when things aren’tgoing well, we dig in and refuse totry simple changes? Isn’t the fact thatthings aren’t going well a sign thatyou might need to try somethingnew?Last Spring, a patient that I hadknown for several years called myoffice sobbing in pain. She had noidea what to do next and felt that notherapies had ever worked for her.We spent some time trying to determinewhat was triggering her pain.When I asked her if she was followingthe diet, she emphatically said“yes.” Her husband, however, wasalso on the phone and he said “No.She has never followed the diet. Shedrinks a pot of coffee a day.” It wasactually worse than that. She alsodrank several diet cokes a day andate chocolate candy.As you can well imagine, she burstinto tears, furious that the truth hadbeen revealed. “Why are you takingaway the things that give me great joy? Idon’t want to stop coffee.” I asked her4 • THE IC OPTIMIST • SPRING 10“Didn’t every doctor you see tell youthat coffee was bad for IC?” She said“yes.” I replied “Did your IC supportgroup leader tell you about coffee?”“yes!” she cried. With growing frustrationI asked “Didn’t I tell you aboutthe IC diet five years ago and how coffeeand soda was so harmful?” Shequietly said “yes” and cried for severalminutes on the phone murmuringabout how it would destroy her day ifshe couldn’t have her coffee.I had to try to explain it in a differentway. I asked “Would you pourcoffee or soda on an open wound onyour hand?” She said “no.” I asked“Don’t you have Hunner’s Ulcers?”She said “yes.” I countered “Aren’tthose wounds in your bladder?” Shesaid “yes.” I asked “Why are youpouring coffee and soda on wounds inyour bladder?” She didn’t answer.Then, with the big guns blazing, Iasked “Do you realize that you’ve sabotagedalmost every treatment you’vetried because you were drinking somuch coffee?”There is a happy ending here.Three months later, she called meback to report that her bladder painwas steadily improving with no dailycoffees or sodas. She had finallyaccepted that she had to change herdiet and life. She had also lostweight and was feeling much moreenergetic.“It is not the strongestof the species thatsurvive, nor the mostintelligent, but the onemost responsiveto change.”– Author unknownAsking people to change and/orleave their comfort zone almostalways creates tension, fear andanger. The question is why. In somecases, it’s about holding on to ouryouth. “I’ve always been able to drink

coffee and soda” is a mantra I’veheard hundreds of times in the pastseventeen years. I usually respondthat “You’re older now. Your body isn’tas resilient as it used to be and it’s verynormal for people to become more sensitiveto foods as they get older.” Then,of course, you have some people whoare in total denial and often strugglingwith addictions to caffeine,sugar or nicotine. Yet, when youhave IC, changing your diet is amust.Change is also worth consideringin your medical care. If, after a reasonableperiod of time, you determinethat a therapy isn’t working foryou, shouldn’t you consider changingthat therapy to something else? Ionce talked with a woman who hadspent more than $30,000 onElmiron. I asked her if it helped her.She said “no.” I asked her why shekept taking it and spending thatmoney if it wasn’t helping. She saidthat she thought she was supposedto. If you haven’t made progress withyour symptoms, it’s important thatyou talk with your doctor and considerother treatment options.Similarly, if you feel that yourphysician has exhausted their knowledgeand experience levels and doesn’tknow what else to offer you, youAsking people tochange and/or leavetheir comfort zonealmost always createstension, fear andanger.should consider looking for anotherphysician who might have newoptions for you to try. IC clinical orresearch centers, such as the newBeaumont Women’s Urology Center,provide world class care with a medicalteam thoroughly knowledgeableabout IC and the latest treatmentstrategies. You can find a list of ICspecialists on our website.Sometimes there can be changethat, in hindsight, you wonder “Whydidn’t I think of that?” If you strugglewith bladder symptoms while you’rein a car or commuting to work, considertrying cars with a smoother, lessbouncy suspension. Sometimes swappingcars with your spouse is the perfectsolution, even if that meansyou’re driving the family van!Intimacy and sex requires anopen, creative mind when you haveinterstitial cystitis or any pelvic paincondition. You may have been raisedto believe that one position is theonly acceptable way to have sex. Nottrue. Someone with a low backinjury may simply not be able to toleratecertain positions while otherpositions are much more comfortable.You have the same option. Beplayful and creative. Try new things.If something is painful or hurts,change and do something elseinstead. You can read much moreabout intimacy in the ICN Romanceand Intimacy Center on our website.“Continuity gives usroots; change gives usbranches, letting usstretch and grow andreach new heights.”– Pauline R. KezerLiving with IC requires change.Yes, there will be times when it ishard and requires courage to accept.Yes, there will be times when youwant to fight change and cling towhat you know. Inevitably, there willalso come a time when you have nochoice but to change. Embracechange! Embrace your butterfly!THE IC OPTIMIST • SPRING 10 • 5

A Natural Approachto IC TreatmentAn Interview with Diana Brady,Author of IC NaturallyEditor’s Note: The author of thenewly released book IC Naturally:A Natural Remedy Approach tothe Treatment of IC, Diana Brady isa pioneer in the discovery and use ofvarious alternative and naturopathicstrategies. She has a B.S. in NutritionalScience from Rutgers University, aM.A. in Nutrition Counseling fromNorwich University and is a CertifiedNutrition Consultant (CNC).Privately trained in the field ofFunctional Medicine, she personallydiscovered many natural remedies forInterstitial Cystitis. As an IC patientherself for over 25 years, her work hasbeen published in Alternative MedicineWomen’s Health Series, InterstitialCystitis Association (ICA) Updates,International Academy of Nutritionand Preventive Medicine newslettersand the Hunterdon County Womannewspaper.How did you first get interested inusing alternative medicine and IC?It was sheer desperation alongwith a friend’s recommendation thatsent me to my first natural remedypractitioner. The improvement inmy overall health and IC symptomswere nothing short of remarkable.This practitioner accomplished somuch for me knowing nothing at allabout IC. I was hooked on naturalremedies for life. In the section ofmy book titled “Introduction of theAuthor” is my entire, lengthy story.6 • THE IC OPTIMIST • SPRING 10How did you educate yourselfabout the many alternativetherapies out there?Very slowly and sometimes verypainfully! My husband owns a naturalremedy health center and he wasalways on the lookout for remediesthat might help IC. I also was fortunateenough to find many experts inthe field and learned as much as Icould from them. When there was aremedy that we collectively thoughtmight help IC, I first tried it onmyself. If it worked over a period oftime I would ask some of the peopleI counseled to try that same remedy.Between us all it was always “trialand error” but the remedies in mybook are the ones most people toleratedwell.What was your motivation forwriting your book, IC Naturally?Writing this book was a very difficultdecision and extremely hard onan emotional level. I found that justliving a daily life the best way that Icould meant not always focusing onIC and at times ignoring it completely.Writing this book meantconfronting the true nature of ICand all the pain I suffered over theyears. One of the women I counseled,now a close friend, keptreminding me year after year that Iwas totally obligated to share theinformation I had with the entire ICcommunity. She finally wore medown and I wrote the book takingbreaks from time to time to dealwith my own emotions.What is a “natural approach” totreatment? How does that differfrom what a urologist mightsuggest?A natural approach to treatmentof any disease focuses on the entirebody (functional medicine) andremedies that not only treat the diseasebut also strengthen underlyingweaknesses. Natural remedies workwith the body as they are primarilyfood substances like enzymes, plantcompounds, vitamins, etc. that ourbodies are designed to recognize anduse appropriately. A urologist is likelyto recommend synthetic compoundsthat are not designed to workwith the body and can have troublesomeside effects. The generalapproach is to “treat the symptoms”not the individual. There is little, ifany, focus on overall health andstrengthening bodily systems therebyimproving the disorder itself.In your book, you emphasize topatients that there are “no magicbullets?” Can you explain why?Unfortunately because there arenone. A natural remedy approachmeans taking the time and makingthe effort to improve overall health.It is a “trial and error” process andrequires the dedication to find whatworks for every individual. There aremany layers to an illness.

Uncovering one layer at a timerequires effort and patience. Somenatural remedies work immediatelyresulting in some relief of symptomswhile others take time, even years,to correct underlying health issues.What I am really saying is that makingthat journey back to whateverlevel of health can be achieved is attimes an arduous road. Each personhas an important role in their ownrecovery. No one can just hand thema “magic bullet”.What is the basic protocol thatyou suggest for IC patients?In Chapter 7 there is a “GeneralChart of Essential Items to be TakenDaily” on page 225. This is the protocolthat works for most peoplewith IC. It consists of aloe vera orglucosamine/chondroitin to coat theGAG layer, pumpkin oil to strengthenthe bladder muscle, combinationof bromelain/quercetin/MSM to stabilizemast cells, fish oils for inflammation,topical DMSO cream forpain and inflammation (note mybook recommends DMSO gel butthe cream is kinder to the skin),progest cream to balance estrogen,Chinese herbs (Calm Down) fornerve pain and sleep, calcium citratefor those who retain oxalates, probiotic/multi-vitamin/vitaminC forgeneral health and 714X for inflammationand infection.How should a patient work withtheir doctor when they would liketo try natural remedies?Many doctors are open to patientsthat take natural remedies and haveobtained impressive knowledgeabout them. There are even a fewmedical doctors that embrace naturalremedies and call themselves “complementary”physicians. It is importantto also work with a health carepractitioner that understands naturalremedies. Communication is vital.For instance, if you start on naturalpain remedies you may be able todecrease pain medication and shouldwork under your medical doctor’ssupervision. Conversely, if you aretaking a new medication you shouldinform your natural remedy practitioner.What if the doctor is resistant totrying a natural approach?In my book I emphasize that eachindividual not only has the right todetermine their own health carethey also have the ultimate responsibilityfor their own health. I urgeeveryone to obtain and keep medicalrecords, coordinate between practitioners,monitor their response totreatment, keep journals, etc.Basically, I advocate that each individualtake control of their ownhealth. If their medical doctor is notcomfortable with natural remedies orwith a patient having an active rolein their own treatment, it is time tofind a new doctor.You offer interesting strategies onrecognizing a bladder infectioninvolving measuring pH. How isthis done?Distinguishing between a bladderinfection and painful symptoms ofIC is relatively easy, and very important.The reason pH paper workswell for this purpose is due to themetabolism of bacteria that haveentered the bladder. Bacteria may bemicroscopic in size but they are livingorganisms. As such they performtheir own metabolic functions. Oneof these functions is to break downurea (urine) into ammonia. It is thisammonia that raises the pH level ofthe urine. A normal PH level ofurine is between 6.0 and 7.4.Anything over 7.4 usually indicatesan active bacterial infection. PHpaper is easy to read but it is importantto know your own individualPH “norm”. Take PH levels of yoururine several times, especially whenyou are not having symptoms. Thenyou will be able to readily identify achange in your own levels signifyinga potential infection.You offer several suggestions forfighting IC pain, including usingcastor oil packs. What does castoroil do?Castor oil is a vegetable oilobtained from the castor bean. Itcontains chains of a fatty acidknown as ricinoleic acid. Castor oilpenetrates deep into the skin due toits low molecular weight. This providessome calming of the overactivenerve endings, reduces inflammationand provides a certain amount ofpain relief. In my book I describecastor oil as “soothing”. It is certainlythat but not a significant source ofpain relief. There are other remedies,such as magnets, that work faster andprovide more pain relief. One importantwarning about castor oil is tonever use heat with the oil on thebladder. Heat can stimulate a bacterialinfection.What have you found to be helpfulfor patients struggling withextreme frequency or urgency?The first remedy I would recommendfor extreme frequency andurgency is Desert Harvest AloeVera. Aloe vera has a proven trackrecord with IC and is almost alwaysthe first step in treatment. Anothergood remedy is Calm Down to calmthe overactive nerves in the bladder,topical DMSO cream and strictadherence to the basic IC diet.Finding the cause for the severeurgency and frequency would benext. There may be several reasonsincluding allergic reactions to food,mold, yeast infection, bladder infection,extreme stress, etc.Fighting pain is complex, particularlyin the pelvis. What advice canyou give to patients strugglingwith constant pain?Pelvic pain is complex becausethere can be multiple causes of thispain. Of course there is pain from anIC bladder but there can also be painfrom Irritable Bowel Syndrome andweak pelvic muscles (Pelvic FloorDysfunction), or a systemic yeastinfection as well as endometriosisand PMS. Determining exactly whatis causing pelvic pain can be difficult.I would recommend startingwith general IC treatments such asDesert Harvest Aloe Vera and topicalDMSO among others listed inmy book, and then proceed to functionaltesting. It is only with the specifictests can some of the causes ofthe constant pain, such as a hormon-THE IC OPTIMIST • SPRING 10 • 7

al imbalance, specific food allergiesor a parasitic infestation be determined.As these underlying healthissues are discovered and treatedoverall pelvic pain should diminish.It is also important to strengthen thepelvic muscles with the appropriateexercises taking care to use magnets,Saventaro, Moducare while exercisingand follow up with ice packs. Ipersonally use Suzanne Somers’thigh master to strengthen my pelvicmuscles.Do you have any suggestionsfor patients who struggle withurethral sensitivity or burning?I have sometimes found thaturethral burning and sensitivity canbe related to oxalate retention.Oxalates are specific organic acidsthat some people do not adequatelyeliminate from their body. Oxalatesare indicated in vulvodynia andknown to cause vulvar pain. I wouldrecommend the test for organic acidsto determine if oxalates are indeed aproblem. The treatment would thenconsist of daily consumption of calciumcitrate and an oxalate free diet.Patients with Hunner’s Ulcersobviously have more severe bladderdamage. Have you found anystrategies that have been helpfulfor these?Hunner’s ulcers are indeed difficultto treat but not impossible.Some bladders with Hunner’s ulcerskeep reducing in size due to scar tissueuntil there is little bladder capacityremaining. Treating Hunner’sulcers involves diminishing the scartissue as well as preventing additionalulcers from forming. The enzymefrom pineapple, bromelain, is oftenused for wound healing and breakingdown scar tissue. Bromelain works byits protein digesting activity to“digest” scar tissue. Since it is a foodenzyme it must be taken on anempty stomach for therapeutic purposes.Otherwise it will just digestfood. A word of caution aboutbromelain, however, as it is a bloodthinner and should be taken withcare if anyone is on a blood thinnermedication. Very high doses ofbromelain are usually recommendedfor scar tissue reduction but even insmall, consistent doses over a periodof there will be a beneficial effect. Itmay take some months, even years,before there is a noticeable impact.Bromelain in combination withquercetin is also beneficial as well asother enzyme combinations such asWobenzyme and Inflazyme-Forte.How can patients find an expert toguide them in natural healing?There are many organizations thatwill help individuals find a practitionerin their area. Practitionerassociations include: www.acam.org,www.aaem.com, www.icimed.com,www.naturopathic.org, www.amaassn.organd www.gdx.net. BastyrUniversity is a well known naturopathiccollege and will provide listsof its graduates currently in practice.What should a patient do if someonesuggests an herb they havenever heard of?The first thing they should do isdiscuss this with their health carepractitioner. It is also a good idea todo some individual research usingsome of the better sources such asthe books written by James A. Duke,Ph.D. on herbs. Armed with theknowledge of what does and doesnot cause pain in IC if the researchidentifies, for instance, that this particularherb is high in B6 or potassium,it might be best to avoid it. Ifhowever there is a chance that thisherb might be beneficial it is best totry it in very small amounts over afew days timeframe. It is essential,however, to ensure that nothing elsechanges at the same time. If there isa beneficial effect without a sideeffect then small increases of theherb could be administered. Keep inmind that some reactions, such asallergic reactions only take placewhen a certain amount of a substanceis consumed. Small amountsmay be tolerated, but not largeamounts.What mistakes do patients commonlymake when consideringnatural remedies?One common mistake that I haverepeatedly seen is the desire for thatelusive “magic bullet.” Natural remedieswork on a different and sometimesslower basis than medication.The whole approach of naturalremedies is very different than thatof traditional medicine. Getting tothe “root cause” of a health issue andpossibly uncovering multiple layersof healing can be a foreign concept.Another issue I have confrontedover the years is a desire to turntheir healing journey over to another.I consistently counsel people thatI am just a conduit. Information isprovided but it is up to the individualto take responsibility for theirown health. Lifestyle changes,changes in diet and even a change inhow they view their own healingjourney is essential for success withnatural remedies.How can patients protect themselvesagainst companies andnatural providers who makeclaims of a cure, particularly theads on the internet?I must confess to being appalledat the internet ads that demandmoney up front but promise a cure.Unfortunately at this time there isno cure for IC. My best advice is “ifit sounds too good to be true, it is.”Stay away from easy cures and magicfixes. The only thing that is magic ishow quickly your money disappears.Do you work with IC patientsnow?? How?I am just starting up a small practiceagain and limiting my timecounseling to 2 days per week. I havedone phone counseling over theyears and across many miles counselingpeople as far as London andSlovakia. My charge is $45.00 perhalf hour. The best way to contactme is through email at: icnaturally@yahoo.com.As my new counselingplans take shape I will post themon my website: www.icnaturally.com.8 • THE IC OPTIMIST • SPRING 10

Chronic Pelvic PainConnecting the Dotsby Susan BilheimerWhen I was first told I had chronicpelvic pain (CPP), I was annoyed.It had taken me the better part of adecade to finally receive a diagnosisof interstitial cystitis (IC), vulvodynia,irritable bowel (IBS), andfibromyalgia. I didn’t need another“label.” Plus, I thought pelvic painhad to do with the bones that makeup the cradle in which the organs sit“down there” and nothing to do withmy constant urge to urinate, vaginalburning, stomach bloating, etc.I was dead wrong. Chronic pelvicpain is the phrase used by the medicalcommunity to describe ongoingor intermittent non-cyclic pain ofany or all the organs and systemsbetween the belly button and thighs.It is essentially the umbrella underwhich a myriad of conditions andsymptoms intersect, including irritablebowel, lower back spasm, and,yes, IC.Dr. Bruce Kahn, a gynecologist atScripps Clinic in San Diego,California, explained the differencebetween acute and chronic pelvicpain. “Women with acute pain come inwith, for instance, an ovarian cyst, abladder infection, appendicitis, and soon. They get treated for the conditionand go on with their lives. Chronic painis very different. It can affect whetherand how you can work, and how youfunction with family and friends.”According to the InternationalPelvic Pain Society (IPPS), CPP isone of the most common medicalproblems affecting women today,estimated to affect one-fifth to oneseventhof American women aged 18to 50. Shockingly, another statisticfrom the IPPS is that of these millionsof sufferers, over half have stillnot been properly diagnosed, almost90% suffer with sexual pain, andmany continue spiraling downwardinto the abyss of despair and pain.CPP is one of themost common medicalproblems affectingwomen today,estimated to affectone-fifth toone-seventh ofAmerican womenaged 18 to 50.Pelvic specialists, such as gynecologists,urologists, and gastroenterologists,often view patients as a collectionof parts, like a carburetor ortransmission, only honing in on thepieces within their purview. Whenthey can find nothing organically orvisually wrong, they often end uptelling you it’s all in your head. Butthe fact is, just because you can’t seepain doesn’t mean it isn’t there!Dr. Robert J. Echenberg,Bethlehem, PA gynecologist andpelvic pain specialist, agreed, saying,“The nervous system has cumulativelystored memories of traumatic eventsthroughout one’s life, such as physicaland/or emotional injuries, abuse, surgeries,intensive sports activities, etc.These are all part of an individual’s pasthistory and provide a guidebook to thenervous system as to how to interpretevents that are happening right now.Unfortunately, for some people, overtime, pain signals are sent out in reactionto even small amounts of stimuliand, worse, these nerves may misfire,sending signals to previously unaffectedareas.”Using phantom limb pain as anexample, Dr. Echenberg said, “Theperson may experience the ‘worst painever’ in the amputated arm or leg, eventhough the limb is no longer there. Inthese cases, the brain is being fed oldTHE IC OPTIMIST • SPRING 10 • 9

information from the region in the spinalcord where it has remained stored sincethe original injury. Similarly, somewomen continue to feel uterine andovarian pain, even following completeremoval of these organs. So, lingering(or chronic) pain actually becomes thediagnosis, though it may be invisible totests and observation, because it’sabsolutely real, in neurochemical terms,absolutely experienced by the patient,and coming from pain generated withinthe nervous system itself.”The pelvis is particularly prone tothese neurological “misfirings”because there is a vast network ofnerves in that area of the body asshown in the picture below:Dr. Echenberg said that treatmentof CPP is a “three-legged stool.”Multi-modality therapies (e.g., medication,pelvic floor physical therapy)are usually needed to control 1)the “triggers” of pain (IC, IBS,endometriosis, etc.), 2) the nervepain itself, and 3) very importantly,relax the resulting severe musclespasms (e.g., with specialized physicaltherapy techniques). Dr.Echenberg stressed that non-surgicalapproaches are usually best when thediagnosis is primarily pain.Recognizing early signs of CPPcan stave off or eliminate future progression.But even for women likeme, who have suffered for yearsbefore being diagnosed, connectingthe dots between all of my seeminglyunrelated conditions and symptomsis a powerful antidote to fear, confusion,and dismissive doctors, andgoes a long way in helping me copewith a syndrome that I will probablyhave to manage for the rest of mylife.Susan Bilheimer is co-author of thebook Secret Suffering: Helping WomenCope with Sexual and Pelvic Pain nowavailable for sale through Amazon.com.Learn more about the book and read herHealing Room Blog on her website at:http://www.secretsuffering.org[Picture courtesy Sara Krause, CMI]10 • THE IC OPTIMIST • SPRING 10

Consumer AlertDo You Know Where YourDMSO is Coming From?by Jill Osborne, MACan you imagine having what isnormally considered a safe treatmentonly to experience severe, irreparabledamage? A young IC patient inTennessee went to her urologist foran instillation of DMSO and sufferedbladder destruction so severe thatshe required immediate bladderremoval surgery. It was later discoveredthat the DMSO she was givenwas not from the pharmaceuticalcompany nor was it made in a USFood and Drug Administration(FDA) approved facility.How could this have happened?To save money, the urology clinicoffice manager purchased cheapDMSO from a compounding pharmacyrather than the FDA approvedRIMSO-50 from the pharmaceuticalcompany. Tragically, the pharmacy inquestion made a devastating mistakeTo save money, theurology clinic officemanager purchasedcheap DMSO froma compoundingpharmacy rather thanthe FDA approvedRIMSO-50.with the dilutions and sent the doctorsoffice improperly prepared medicationthat was far too strong. It wasapparently solvent strength.Compounding pharmacies havecome under increasing scrutiny inrecent years by FDA. “In its traditionalform, pharmacy compounding is avital service that helps many people,including those who are allergic to inactiveingredients in FDA-approved medicines,and others who need medicationsthat are not available commercially,”said Kathleen Anderson, Pharm.D,Deputy Director of the Division ofNew Drugs and LabelingCompliance in FDA’s Center forDrug Evaluation and Research(CDER) in a 2007 FDA article. (1)“But consumers need to be aware thatcompounded drugs are not FDAapproved,"Anderson says. “Thismeans that FDA has not verified theirsafety and effectiveness.” The Agencyknows of more than 200 adverseevents involving 71 compoundedproducts since 1990.In this economy, we can certainlyunderstand the motivation of theoffice manager to reduce costs but atwhat price to the patient? Simplyput, compounding pharmacies do nothave the same level of oversight aspharmaceutical companies who mustjump through tremendous hoops tobe approved by the US Food andDrug Administration (FDA).When a medication is approvedTHE IC OPTIMIST • SPRING 10 • 11

y the FDA, its manufacturing comesunder intense review, including:• Raw Materials – The FDA verifiesthat raw materials are high quality,sterile and sourced from reliablefacilities.• Manufacturing – The FDAinspects manufacturing facilities toverify that they are using acceptablemanufacturing practices, againwith a focus on sterility and productquality.• Product – The FDA evaluatesthe end product to verify that it isuncontaminated, pure and containsappropriate levels of medication.While pharmaceutical companiesare often frustrated with the inspectionsand reporting that they endure,clearly these are three “fail safes”that insure that patients are beinggiven safe product.Compounding pharmacies haveBladder Problems?Enjoy everyday life,again!Some foods are keeping many people from doing thethings they once enjoyed. Are you one of the many whoavoid car rides, little league games, movies and familydinners because of the effects of acidic foods?Many people are highly sensitive to food. For some,various foods can cause occasional heartburn, for othersthe "hidden irritant" in foods can exacerbate urinaryproblems or bowel distress. In most of these cases, theproblem lies with the unsuspected acid in the foods.Prelief is a safe, effective over-the-counter product thatcan help you stay comfortable. Prelief works by taking theacid irritant out of foods, so these foods are less likely totrigger problems. With Prelief you can enjoy life again.Go ahead...take that long car ride, cheeron your favorite little leaguer andwatch the entire movie. A tripto the grocery store won't haveto include a map to the restroom;a family dinner can be longand lingering!Available in the antacid section atAlbertson's, Eckerd, Long's, Meijer,Osco, Publix, Rite-Aid, Savon,Walgreen's and many other fine stores.Also available by phone or www.prelief.com.Safe. Reliable. Effective.CALL 1-800-994-4711for literature and a coupon¨P0212 ©2005 AkPharma Inc.Veterinary grade DMSOis used commonly onhorses and is lesssterile than the DMSOproduced for medicaluse in humans.very few review processes. They aremonitored only by their State Boardof Pharmacy which does NOT generallyprovide product quality testing.A few years ago, an interestingreport crossed my desk that talkedabout the growing demand forDMSO in the world and how Chinawas now exporting large quantities.Cruise the web and you’ll finddozens of Chinese companies brokeringlarge drums of DMSO with little,if any, discussion of product qualityand sources on their websites. Yet,given the deaths that resulted fromthe contaminated heparin producedin China as well as the plasticmelamine that has been repeatedlyfound in dairy products, it’s difficultto trust any pharmaceutical or consumableimported from China unlessthey were subjected to quality controltesting here in the USA uponarrival. We hope that compoundingpharmacies are verifying the source,sterility and safety of their products.Secondly, not all DMSO is thesame. Veterinary grade DMSO isused commonly on horses and is lesssterile than the DMSO produced formedical use in humans. Serious sideeffects can occur if humans are givenveterinary grade product.What can you do to protectyourself from inappropriate drugcompoundingpractices? The FDAsuggests that you ask your doctor ifan FDA-approved drug is availableand appropriate for your treatment.Talk with the pharmacist has experiencecompounding the product inyour prescription. Ask how it shouldbe stored or used. Of course, if youexperience any problems or sideeffects, please contact your doctor orpharmacist immediately and stopusing the product.Please bring this article to theattention of your urologist and, betteryet, ask if they are using a compoundedDMSO and/or RIMSO-50,the FDA approved version of DMSOin the USA. To avoid tragedies likethe young woman who lost her bladderdue to a poorly prepared DMSO,we think RIMSO-50 is the morereliable product.Reference:(1) FDA Publication “The SpecialRisks of Pharmacy Compounding” May31, 2007. Updated 5/4/10.http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm107836.htm12 • THE IC OPTIMIST • SPRING 10

The Latest IC ResearchPrimary Care Providers and ICIn one of the most interesting surveysin recent years, researcher J.Quentin Clemens and colleagues surveyedover 550 primary careproviders (PCPs) throughout theUSA to assess their knowledge ofinterstitial cystitis as well as theirability to recognize potential interstitialcystitis patients. They stated “Wedeveloped a clinical vignette describing awoman with typical IC/PBS symptomsto elicit questions about etiology, managementstrategies, and familiarity withthis syndrome.”The survey was mailed to PCPs inBoston, Los Angeles and Chicagowith a 52% response rate. Theresults were fascinating.• 19% reported they had “never”seen a patient like the one describedin the vignette.• 66% correctly identified thehallmark symptom of IC/PBS asbladder pain or pressure.• 90% correctly indicated thatIC/PBS was a noninfectious disease• 76% correctly reported that itwas not caused by a sexually transmittedinfection• 61% correctly indicated thatit was not caused by a psychiatricillness.While the results seem promising,it’s also disappointing that perhaps39% may still believe that IC couldhave a psychiatric origin. Theresearch team concluded that“Although most PCPs indicate familiaritywith IC/PBS, they manage the conditioninfrequently. They also appear tohave significant knowledge deficits aboutthe clinical characteristics of IC/PBS.”Clearly, more effort must be made toeducate primary care providers aboutIC.Source: Clemens JQ et al. A surveyof primary care physician practices inthe diagnosis and management ofwomen with interstitial cystitis/painfulbladder syndrome. Urology. 2010 Mar18Trigonal Injection of BotulinumToxin May Be Preferred Method ofAdministration for BPSAuthor - Phil Hanno MD (UroToday)The analgesic effect of Botulinumtoxin A (BoNTA) results fromdecreased neuropeptide release atperipheral extremities, and glutamate,substance P, and calcitoningene-related peptides from the centralendings of bladder sensorynerves. In the first case, neurogenicinflammation is prevented, and inthe second, nociceptive transmissionbecomes inhibited at the spinal cord.Most nociceptive bladder afferentsare concentrated in the trigone.Previous studies that injected theentire bladder of BPS patients withBoNTA placed most of the neurotoxinfar from the nociceptive fibersand increased the risk of decreasingdetrusor contractility.Dr. Rui Pinto and colleagues fromSao Joao, Portugal took the logicalnext step and studied the effectiveness,safety, and duration of treatment/retreatmentof BPS patientswith BoNTA applied exclusively tothe trigone. They also monitored theurine concentration of two neurotrophicfactors known to influencethe activity of nociceptive afferentfibers – nerve growth factor (NGF)and brain-derived neurotrophic factor(BDNF). Twenty-six women withBPS were studied. BoNTA wasinjected under light sedation througha 23-gauge needle inserted 3mm intothe trigonal wall under cystoscopiccontrol. A total of only 100 unitswas distributed throughout 10 sites.Two weeks after treatment, nopatients reported any voiding difficulties,and none had a high postvoid residual or urinary infection.Sixteen patients were followed for 2years and 10 patients had 6 monthfollow up. A marked decrease in theO’Leary Sant symptom and problemscores was observed. Pain intensity,daytime and nighttime voiding frequency,and quality of life all showedsignificant improvement, and bladdervolume to first pain sensationand maximum cystometric bladdercapacity also increased significantly.The average duration of clinicalimprovement was 10.1+2.4 monthsafter the first treatment. Of the 16patients who were retreated, therewas no tachyphylaxis and improvementwas over 10 additional monthson average. Dramatic decreases inNGF and BDNF were noted 1month after treatment and persistedup to 6 months, though rising fromthe low levels in the first weeks aftertreatment. The duration of clinicalimprovement was comparable to thatreported for the use of BoNTA foroveractive bladder. The authorsmanaged to use a low dose of medication,thus cutting the expense ofthis procedure, one that is not coveredby many insurance companiesin the United States when used forBPS. Morbidity was minimal andresults were dramatic. If confirmed ina larger, placebo-controlled RCT,this therapy might become a part ofthe standard armamentarium forBPS.Source: Pinto R et. al. TrigonalInjection of Botulinum Toxin A inPatients with Refractory Bladder PainSyndrome/Interstitial Cystitis.(Reprinted with the permission ofUroToday.)Antidepressant Drugs for ChronicUrological Pelvic Pain: AnEvidence-Based ReviewAuthor - Phil Hanno MD (UroToday)The analgesic properties of antidepressantdrugs were first reported 40years ago. They are now widely usedfor the treatment of chronic andneuropathic pain. Their efficacy hasnow been shown in randomized controlledtrials (RCTs), systematicreviews and meta-analyses. Muchremains to be learned about theirefficacy in chronic pain.THE IC OPTIMIST • SPRING 10 • 13

Christos Papandreou and colleaguesfrom Ioannina, Greecerecently published a comprehensiveevidence-based review of the literaturein an effort to assess the availableevidence for the efficacy andacceptability of antidepressant drugsin chronic urological pelvic pain.They note that antidepressants maybe effective either by acting directlyon the neural mechanisms of pain orby reducing depressive symptomsthat may influence the experience ofpain or the capacity to cope with thepain. While epidemiological studiesof chronic pain have shown thestrong association between depressivesymptoms and experience ofpain in general and chronic pelvicpain in particular, evidence suggeststheir analgesic effect seems to beindependent of their antidepressanteffect. Studies have shown that thespinal and neuronal pathways aremodulated by activation and/or inhibitionof neurons in the periphery, atspinal levels and at supraspinal regulatorysites. Serotonergic pathwaysand receptor mechanisms play a crucialrole within this neuronal network.The antidepressants alleviatesymptoms probably via mechanismssuch as blockade of acetylcholinereceptors, inhibition of reuptake ofreleased serotonin and norepinephrine,and blockade of the histamineH1 receptor.The authors categorized the levelof evidence for each paper theyreviewed based upon guidelinesdeveloped by the Agency forHealthcare Research and Quality.Level 1 evidence (meta-analysis ofRCTs) was not found and level 5evidence (case reports) were notincluded. This left level 2, 3, and 4evidence: RCTs, non RCT trials, andretrospective case series respectively.They included 10 studies in theirreview for analysis, 5 on amitriptyline,2 on sertraline, and 1 each onnortriptyline, duloxetine, and citalopram.The main finding of this review isthat the use of antidepressants in themanagement of chronic urologicpelvic pain is not as yet supported byan adequate number of well-designedclinical trials. Whether it ever willbe, with the majority of medicationsnow available in generic form, isdoubtful. Amitriptyline was found tobe effective compared with placeboin interstitial cystitis, but only onereported trial was an RCT. Twoamitriptyline studies were of longerduration and showed that long-termuse may be well tolerated.Papandreou and co-workers concludethat antidepressants are generallysafe drugs with tolerable side effects.The withdrawal rates in most studieswere not high and the reported reasonsfor the withdrawal were not relevantto the side effects.Antidepressants are safe generallytolerable drugs and may have a placein the treatment of chronic urologicalpelvic pain. Amitriptyline, inparticular, may be useful in the managementof interstitial cystitis.Further research is necessary. Theauthors suggest that carefullydesigned placebo-controlled doubleblind studies of longer duration withlarger numbers of patients sufferingfrom chronic urological pelvic painare needed. Their suggestion to stratifythe sample with respect to thepresence or absence of major depressionseems a valid one. The large,multicenter study RCT from theNational Institute of Diabetes andDigestive and Kidney Diseases onthe use of amitriptyline for interstitialcystitis should be published inthe spring, and will provide muchneeded data, though it must be keptin mind that it did not compareamitriptyline alone to placebo, butrather behavioral modification andconservative treatment strategies intreatment naïve patients with eitheramitriptyline or a placebo, thuspotentially masking some of the drugeffect.Source: Papandreou C. et al.Antidepressant Drugs for ChronicUrological Pelvic Pain: An Evidence-Based Review(Reprinted with the permission ofUroToday.)14 • THE IC OPTIMIST • SPRING 10

Clinical Trial News:Stabbing, burning, piercing bladder pain? Don’t suffer in silence.A Clinical Research Opportunity: Join in the quest to advance new pain medicines for InterstitialCystitis/Painful Bladder Syndrome (IC/PBS)A new clinical trial is now enrolling patients withIC/PBS pain. If you suffer from moderate to severepain associated with IC/PBS, please consider this aninvitation to take part in an important clinical trial.This clinical trial is designed to see how well astudy medicine for pain works at reducing moderateto severe IC/PBS pain. It will also explore the affectof the medicine on urination frequency and urgency.For a limited time, and in several countries, thisIC/PBS clinical study is screening people over age18 years old with IC/PBS. Once approximately 300IC/PBS patients have enrolled in this study, thisclinical research opportunity is planned to close.If you qualify for the study, you will receive 2subcutaneous injections of the study medicine orplacebo (dummy medicine) at the clinic on twostudy visits. Over the 24-week study period, after ascreening process, you will need to visit the studycenter 7 times with at least 3 telephone contactsfrom the research site.To qualify, you must:• Be at least 18 years or older• Have had IC/PBS symptoms (including pain) for at least 6months• Agree to attend the required clinic visits for 24 weeks afterscreening, and follow the treatment plan carefully• Agree to keep a daily diary of your symptoms• Undergo cystoscopy unless you’ve had this procedure withinthe past two yearsIf you qualify and agree to participate you will:• Possibly gain more knowledge about your IC/PBS and how tomanage it• Have a greater chance (80%) of receiving the study medicine,and less of a chance (20%) of receiving theplacebo (dummy medicine)• Keep a daily diary that will carefully monitor your pain andother symptoms• Receive medical tests help you learn about your body and itsresponse to the study medicine• Possibly be compensated for travelVisit www.BladderPainStudy.org today to see if you might qualify.THE IC OPTIMIST • SPRING 10 • 15

New Women’s UrologyCenter in Michigan!(Royal Oak, MI) It’s somethingthat women don’t talk about even totheir best friends or their doctors.That’s why Beaumont Hospitals hascreated a new Women’s UrologyCenter offering leading-edge treatments,innovative research and themost advanced minimally invasiveprocedures for women’s urologicalconditions such as incontinence,pelvic pain and sexual dysfunction.It is the first center in theMidwest dedicated and designedexclusively for women’s urologicalcare and sexual health.“We have created a special, privateand comfortable place for women to gowhere people who care will listen, evaluatetheir problem and provide treatmentthat will make a difference in theirlives,” says Kenneth Peters, M.D.,chairman of Urology at Beaumont,Royal Oak.The 4,200-square-foot, $1.6 millioneco-friendly center, opened atBeaumont Hospital, Royal Oak thisSpring. It was made possible througha generous $5 million gift fromSusan E. Cooper of Birmingham, along-time member of the Boards ofDirectors of Beaumont Hospitals andthe Beaumont Foundation.The new center is staffed byboard-certified, fellowship-trainedphysicians and a nurse practitionerwho specialize in women’s urologicconditions. The center offers:• Beaumont’s nationallyrenowned pelvic floor physical therapyprogram• Comprehensive integrativemedicine services, including medicalmassage, guided imagery and Reikitherapy• Psychological support to helpwomen understand and manageemotional stress resulting from urologicconditions• Access to clinical research trialsevaluating new treatment options16 • THE IC OPTIMIST • SPRING 10Conditions evaluated and treatedat the center include urinary frequencyor urgency, urinary incontinence,interstitial cystitis or painfulbladder syndrome, unexplainedpelvic pain, vulvar pain, sexual problemsor pain associated with sex andpost-cancer treatment for vaginaldiscomfort or dryness.The new center is convenientlylocated at Beaumont, Royal Oakwith quick and direct access to parking.The center’s soothing décorincludes special, padded seating forpatient comfort, and eco-friendlyelements such as natural cork flooring;carpet tiles with anti-microbialfibers and recyclable backing; energy-efficientlighting; and lowvolatile-organic-compound paintsand adhesives that reduce toxicemissions. The center will featureoriginal botanical photographs byBirmingham artist Laurie Tennent.Although urologic conditions arevery prevalent in women, many ofthem go undiagnosed and untreatedbecause women are embarrassed todiscuss their symptoms or becausetheir doctor lacks the expertise tohelp them. According to theNational Association forContinence, two-thirds of womenages 30 to 70 have never discussedbladder health with their doctor.One-third of women experienceincontinence, the leaking of urinewith loss of bladder control. Withstress incontinence, urine leakageoccurs when stress is exerted on thebladder by coughing, sneezing orlaughing. With urge incontinence,there is a sudden, intense urge to urinate.Pelvic pain affects one out ofevery six women. According to theNational Pain Foundation, 61 percentof women with pelvic painremain undiagnosed. Symptoms ofKenneth Peters, M.D., chairman ofUrology at Beaumont, Royal Oak.pelvic pain include severe and steadyor intermittent pain in the pelvicarea, pain during intercourse or vulvarpain or pressure.The Women’s Urology Centerwill incorporate the services of theWomen’s Initiative for Pelvic Painand Sexual Health, a program fundedthrough the generosity of localphilanthropists Florine and J. PeterMinistrelli of West Bloomfield.Beaumont’s Urology department isnationally renowned for research andinnovation, ranking 34th on the2009 U. S. News & World Report“America’s Best Hospitals” list.Beaumont urologists were first inthe United States to use a person’sown stem cells for the treatment ofstress incontinence through aresearch study that’s now enrolled 40patients. The cells are used tostrengthen weakened muscles tocontrol urination.In addition to services available inthe new center, Beaumont urologistsalso offer endoscopic, robotic andminimally invasive laparascopic surgicaloptions as well as traditionalsurgeries; treatment for kidneystones; urologic cancer; prostate conditions;male infertility; voiding dysfunction;and erectile dysfunction.To schedule a consultation at thecenter, call 248-898-0898.

Self-Help Tip of the MonthDon’t Be ShyAbout YourSymptomsby Jill Osborne, MAAt least once a month I talk withan IC patient who, for a variety ofreasons, is simply unable to talkabout their bladder and pelvic painsymptoms. They usually offer vague,non specific words like “it hurts downthere” thus requiring twenty minutesor more of carefully worded questionsto determine what’s really going on.Unfortunately, doctors rarely havethe time it takes to get these patientstalking more, thus leaving both thepatient and the physician frustratedand unsatisfied with the appointment.One of my most memorable conversationswas with a very kind, elderlywoman who was unable to findthe right words to use with her doctor.In addition to her IC, she struggledwith some unusual “crotch”symptoms. It took dozens of detailedquestions before she was able to saythat when she urinated, she also hada strong “pressure like” sensation tohave a bowel movement. This hadbeen going on for years and yet she’dnever been able to describe it to herdoctors. This was, indeed, a veryunusual symptom that was laterdetermined to be fairly severe pelvicfloor dysfunction.There’s no doubt that men andwomen of an older, gentler age weresimply discouraged from talkingabout their “personal” problems but,in 2010, even younger folks strugglewith finding the right words todescribe their symptoms. Men withIC often have referred pain to the tipof their penis and the testicles yetoften feel uncomfortable telling theirdoctors where the pain is and whenit occurs. Similarly, women with ICmight struggle with vulvar pain or anunusually odd “painful arousal” sensationthat occurs when the pudendalnerve becomes irritated. Not surprisingly,women rarely tell their doctorsabout it for fear of being labeled asexual pervert.Teenagers and/or people who havenot read books about their health oranatomy may not know what theirdifferent body parts are called.Asking “do you have pain in your urethra”to them is like speaking a foreignlanguage. They may not knowwhat the urethra is and where it islocated, much less be able to tell youthat the sharp burning they feelwhen they urinate is located in theurethra. Fancy words are notrequired. If you’re comfortable usingthe word “pee” rather than “urinate,”go for it!Tragically, there are patients whoare unable to talk. One of the saddestconversations I had was with amother whose teenage daughter hadsevere cerebral palsy and IC. Shecouldn’t speak and the only way thather mother could tell when her ICwas bothering her was when shesquirmed in bed or cried.Similarly, elderly patients oftenstruggle with consistent and severebladder problems that medical staffincorrectly assume are bladder infections.In one case, one family memberrelated to me that her mother,long diagnosed with IC and living ina convalescent hospital, was beinggiven coffee and cranberry juiceevery morning and by the afternoonwas suffering severe pain. Once thestaff were educated about the IC dietand provided other drinks, her motherimproved dramatically.Your ability to verbalize and discussyour symptoms is essential toyour health. If you find yourselfstruggling to describe your symptoms,THE IC OPTIMIST • SPRING 10 • 17

consider the following words and usethose that apply to you:Location: bladder, bowel, urethra,rectum, vulva, vagina, penis,testicles, scrotum, lower back,upper back, legs, hipsSymptoms: frequency, urgency,pressure, pain, difficulty starting urination,constipation, spasms,What does it feel like? Burning,aching, razor blades, ground glass,tightness, an electrical shock sensation,something falling or droppingout of you, something being pushedinside of you, stiffnessHow often does it occur? Is itepisodic or continuous?? Does itoccur every night?? Every morning?Is it worse before meals or aftermeals? Does it happen before yourmenstrual period?Are your symptoms positional?Does it occur when you’re sitting,standing or walking? Does movementmake it better or worse?Does it involve urination ordefecation?? If so, how? Is the painworse before you urinate, while youare urinating or after you are doneurinating? Does the pain changewhen you have a bowel movement?Saying “I’m in pain down there” isnot going to get you very far. But, ifyou say, “my bladder hurts before I peeand I feel a bit better after I pee,” that’smuch more helpful and suggestive ofbladder wall irritation. If you say“My pain is the worst at the end ofurination and it’s so bad that I hategoing to the bathroom”... then that’ssuggestive of perhaps some bladderor pelvic floor spasms.Remember, there’s no shame inhaving IC or any other medical condition.Most doctors talk about urinating,bowel movements, hemorrhoidsand many more embarrassingconditions every day. Don’t allowyourself to suffer! Just go for it.“Thanks to Bladder-Q,I have my life back again.”—Antoinette JeanNATURAL - SAFE - EFFECTIVEMoney Back GuaranteeLearn more at www.thenaturalbladder.comVague Conversation #1Patient: I need help. I hurt “downthere.”Jill: Where down there?Patient: Down there.Jill: Your crotch?Patient: Yes.Jill: Where in your crotch?Patient: It’s just down there.Jill: Okay. Let’s try this a differentway. Is it internal pain or external??Is it inside your belly or onyour skin?Patient: It’s on my skin.Jill: So, you can put your handson where it hurts, right?Patient: Oh…I guess I can.Jill: So, where does it hurt? Byyour rectum? Your vagina? Yoururethra? Or your clitoris?Patient: Oh, it’s on my vulva.Jill: So, the pain isn’t related atall to your bladder or when youurinate?Patient: No, I just can’t sit downcomfortably.Further discussion revealedthat she was over 50, strugglingwith menopause and had awicked case of vulvodynia.Vague Conversation #2Patient: I hurt. I don’t know whatto do.Jill: Okay. Where do you hurt?Patient: Down there.Jill: Where down there?Patient: My bladder.Jill: Okay. Is your pain associatedwith urination?Patient: Yes. It hurts.Jill: When does it hurt the most?Before you urinate, while you areurinating or after you are doneurinating?Patient: It just hurts.Jill: But this is important. I wantyou to think about this. Whendoes it hurt the most? As yourbladder fills up or when youempty your bladder:?Patient: I hate going to the bathroom.It hurts at the end. I justwant to jump off the toilet.Further discussion revealedthat this person was strugglingwith bladder spasms.18 • THE IC OPTIMIST • SPRING 10

How Does YourGarden Grow?by Julie Beyer, MA, RDPlanting and nurturinga garden can be agreat family activity.My husband’s family always had agarden. In my mind it was more likea mini-farm—over an acre of earth,tilled and nurtured to produce thefruits and vegetables they would eatall year long. Everything from thatgarden seemed richer and moreappealing than the produce found inthe grocery store. The dark greenlettuce and spinach still had a wonderfulearthy smell after it waswashed and served for dinner. Thecarrots and onions were sweeter, andthe potatoes seemed to melt in yourmouth without taking a bite. Manysummer evenings were spent cleaninggreen beans, shucking peas, freezingberries, and canning tomatoes.My in-laws produced all of this foodorganically, long before the term“organic” was a part of everydayvocabulary.What we didn’t know thirty yearsago was that as good as the food tasted,it was also better for us. Foodthat has been picked and truckedacross the country is often harvestedprior to peak maturity so that a fully“ripened” product can be sold atyour local grocery store. This is greatfor people who otherwise wouldn’thave fresh broccoli, lettuce, and carrotsduring the winter. The price ofthis seasonal convenience, however,is the incredible amount of fuel consumedas well as the fact that quality,including a loss of nutrients, is compromisedalong the way. In contrast,food from a family garden or grownlocally uses less fuel in transport andcan be harvested closer to maturity,improving both the taste and nutrientdensity of the product. In fact,because home-grown produce doesn’thave to be transported long distances,the need for pesticides (andultimately the consumer’s exposure)is greatly reduced.Planting and nurturing a gardencan be a great family activity.Children who help grow vegetablesare actually more inclined to eatthem. When my children wereyoung, we planted some carrots andzucchini in the small plot of dirt bythe front door of our town house.They were so excited when we couldfinally harvest a few tiny carrots andstir-fry the zucchini. (I think theywere even more fascinated to seehow large the zucchini grew whenwe didn’t pick it right away!)Your local nursery or cooperativeexchange office can tell you whatplants grow the best in your area.For a small IC friendly garden youTHE IC OPTIMIST • SPRING 10 • 19

might want to try low-acid and/oryellow tomatoes, green and red bellpeppers, squash, zucchini, carrots,potatoes, lettuce, and spinach. Freshherbs such as oregano, basil, chives,and lemon grass can be expensive tobuy in the store, but are actually veryeasy to grow in containers. You caneven bring them indoors for the winter.As nutritious as garden food canbe, that is only the beginning whenit comes to the health benefits ofgardening. Digging, planting, weeding,and harvesting are great physicalactivities. If bending over is hard foryou, use an old yoga mat or a rubberbath mat to kneel or sit on while youwork. Although a small amount ofsun exposure may help build up yourVitamin D reserves, it is good practiceto wear a hat, long sleeves, andsunscreen while you are outside. Ifpossible, try to do most of your gardeningactivities in the morningbefore the sun gets too high. To minimizebites by mosquitoes and otherinsects, use one of the several brandsof eco-friendly, non-toxic bug repellantsnow on the market.Gardening also has documentedmental health benefits. People whogarden report less depression andanxiety. Whether you start yourplants from seed, or buy partiallymature plants from the nursery,watching your garden grow a bitmore each day can be a relaxinghobby, even meditative. Weeding agarden, pruning back branches on asquash plant, and finally, harvestingthe fruits of your labors can generatea sense of accomplishment, even ifother areas of your life seem to beunstable or uncertain.What if you can’t, or are not sureyou want to grow your own fruitsand vegetables? You can still have apositive impact on your health andthe environment by purchasing producefrom your local farmers’ marketor cooperative. Choosing food that islocally grown strengthens your community’seconomy and supports smallbusiness owners instead of huge produceconglomerates. Farmers’ marketscan also be a great source forpreservative-free homemade bakedgoods, organic honey, jams, andlandscaping plants. To find familyfarms and/or local farmers’ marketsnear you, visit Local Harvest onlineat www.localharvest.org, and enteryour zip code in the search engine.Julie Beyer, MA, RD, Author andIC Diet Counselor, www.ic-diet.comConfident Choices: Customizing theInterstitial Cystitis DietConfident Choices: A Cookbookfor IC and OABInterstitial Cystitis: A Guide forNutrition EducatorsSquare Foot GardeningAre you looking for a quick andeasy way to get started in gardening?Square Foot Gardening is atype of container gardening thatis appropriate for people with alllevels of experience. While gardeningis already considered a“green” activity, these compacthobby gardens are also appealingbecause they use less water,space, and fertilizer. The gardenscan even be built up higher,allowing for easier cultivatingand weeding for people who mayhave trouble bending and kneeling.Sharon G. writes, “Mydaughter and I have both triedsquare foot gardening. It is a greattechnique for smaller spaces andalmost any vegetable can be grownsuccessfully. It is incredibly relaxingto have a small garden to take careof, and it is very satisfying to growsome of our own food. A small gardencan produce more food thanyou realize. Green onions and bellpeppers are amazing right out of thegarden. My daughter has evenincorporated her square foot gardeninto their backyard landscaping! Itlooks beautiful, adding a visualappeal to her property that flowersalone cannot.”For more information aboutSquare Foot Gardening includingideas, geographic considerations,and supplies, visit www.squarefootgardening.com.20 • THE IC OPTIMIST • SPRING 10

Soy and ICThree Patient Storiesa Fresh Tastes columnby Bev Laumann, authorof A Taste of the Good Life,a Cookbook for An IC Diet.Lillie’s StoryLillie had the disease more thantwenty years. Still, she felt she hadher IC symptoms pretty well undercontrol and rarely had flares. On thisday she was in a hurry to get homefrom work and just had one quickstop to pick up groceries. At thestore, she headed straight for thebread aisle. Once again, she didn’tsee her favorite whole wheat bread.The store had suddenly stoppedstocking it and she’d done without itfor three weeks. In its place was astack of Millbrook 100-percentWhole Wheat loaves, a nationallydistributed brand. She checked thelabel for things that she was sensitiveto. The preservatives were ones shewas okay with (she had eaten thosein other foods with no problems) soshe figured it would be fine. Shetossed one in the cart. Over the nextweek she used the bread for everythingfrom french toast to turkeystuffing. It didn’t seem to bother herbladder so it became her new breadof choice.About three weeks later, Lillienoticed her bladder seemed slightlymore sensitive than usual. “Whatlousy timing,” she thought. For thepast week, she’d had more than herusual amount of interest in her husband’sphysical affections. “Maybethat’s the cause of my bladder flare-up,”she thought, “too much of a good thingirritating the bladder. I’ll try stayingaway from that for two weeks...let mybladder heal up.” But even sexualabstinence didn’t help. Her bladderwas hurting more and more everyday. She began regularly taking thepain pills her doctor gave her.By the time she had been eatingthe bread daily for nearly five weeks,she was in a constant and increasinglysevere IC flare-up. By then, shedidn’t associate her pain with thebread. (After all, almost all of thefood-triggered flares she’d ever hadcame on within hours of eating theoffending food. Only on very rareoccasions would one hit her the followingday.)When she couldn’t take it anymore,she called in sick at work. Shehad her doctor check for a bladderinfection or a vaginal yeast infection.Nothing there. She checked andrechecked labels on foods she ate.Nothing her bladder reacted tothere. Now she was getting frustrated.She couldn’t figure out what wascausing the flare-up in bladder pain.Her doctor suggested maybe the diseasewas just going through a normalphase of fluctuation...worse forawhile, then better for awhile. Shewas just in one of the “worse” phases.He suggested she increase the dosageof her usual IC medication.Then one morning shestood in the kitchenand read the breadingredient label whilewaiting for her toastto be done. There itwas, toward the endof the ingredient list:soy flour.THE IC OPTIMIST • SPRING 10 • 21

His explanation sounded logicalalright, but his explanation for herplight just didn’t “feel right.” Shebegan taking more of her usual ICmedication as he recommended, butthe flare continued. Was her medicationbeginning to fail? What ifeverything that worked for her suddenlystopped working? She satalone at home with her heating pad.Her mind wandered to increasinglycatastrophic scenarios.She felt helpless and scared, andmostly depressed. The pain justseemed to keep on and on and therewasn’t anything she could do aboutit. She’d been home from work fortwo weeks and was seriously thinkingabout going out on disability.Then one morning she stood inthe kitchen and read the breadingredient label while waiting for hertoast to be done. There it was,toward the end of the ingredient list:soy flour. “How can that be in breadcalled ‘100-percent Whole Wheat’?”she commented to her husband.“How do they get away with that?”Then she remembered seeing soyproducts on a list of IC foods toavoid. Her bladder did flare up withaged and fermented products like soysauce and tofu. Yet on several occasionsshe’d eaten soybean oil andsome fried soybean snacks with noproblems. She wasn’t allergic to soyeither... at least she didn’t think so.If the bread’s soy flour was the problem,wouldn’t it have made her bladderflare up the first day or two?“Just throw the bread out... anything’sworth a try,” her husband volunteered.Within a week of tossingthe bread, the flare began to subsidea little. Two weeks after that she wasback at work and her bladder wasback to normal.Trish’s StoryTrish was recently diagnosed withIC. She’d been experimenting withdiet since her doctor gave her a listof foods to avoid, and she knewwhich foods bothered her bladder.She’d had eaten grilled Ahi tuna on22 • THE IC OPTIMIST • SPRING 10several occasions with no problems.Yet she had recently been eatingcanned tuna in a favorite recipe andevery time she tried it, within hoursher bladder was on fire. What addedinsult to injury was that the tunaalso gave her a case of sour stomachand indigestion before the bladderpain came on. She switched fromtuna in oil to tuna packed in springwater, but the change made no differencein the bladder pain. Whenshe made the recipe with cannedcooked chicken instead of tuna however,she had no bladder reaction.Most IC patientsreport that reactionsto soy sauce, tofu, orhydrolyzed soy proteinare like Trish’s – fairlyspeedy.She was sure canned tuna made herIC worse.She checked her doctor’s diet listagain. She checked two different ICdiet lists on the internet. None listedtuna as a food to avoid. So howcome the flares?? Something aboutthe canning maybe?? It couldn’t beanything else in the recipe or thechicken version would have causedan IC flare-up too.Finally she called another ICpatient and together they tried tofigure it out. Since her friend's bladderflared when her allergies did, thefriend asked Trish about possiblefood allergies. “No”, Trish said, “Idon't have any allergies at all actually. Idon’t think I’m allergic to tuna...I’vehad grilled tuna plenty of times withouta problem.” Trish read the label, “Thecan here says ‘tuna, water, hydrolyzedsoy protein’... could it be the soy protein?Soy sauce is something Iavoid...could the soy protein be a problemtoo?" “Well I don’t know,” saidher friend, “maybe the only way to tellis to try some plain tuna in water...some brand that doesn’t have thehydrolyzed soy protein in it.”Trish found other varieties at herstore that contained only tuna andwater: Star-Kist Gourmet and Star-Kist “Low-Sodium.” Bravely tryingthose, she waited for the symptoms...andwaited...and waited. Thechange seemed to do the trick, andher tuna recipe – minus the soy protein– is now back on the dinnertable at Trish’s house.Unlike Lillie, Trish’s reaction tothe hydrolyzed soy protein was quickand dramatic, occurring within hoursof eating it. Most IC patients reportthat reactions to soy sauce, tofu, orhydrolyzed soy protein are likeTrish’s – fairly speedy.My Own Soy StoryNo matter how long you’ve hadIC, you’ll always be learning somethingnew. I still learn new thingsabout IC, about my body, and how itreacts to foods even after havingbladder problems for years. Just thislast winter I learned that not all myIC flares come on in a few hourseither.Aged or fermented soy productslike soy sauce, tofu, or miso havealways bothered my bladder. Theycontain high amounts of inflammation-stimulatingmonoamines. I usuallyavoid soy protein isolate orhydrolyzed soy protein too. (The waythey’re manufactured results in MSG– a notorious nerve sensitizer – beingformed. Even the tiny amount ofMSG present in hydrolyzed proteinproducts is enough to trigger a bladderflare for me). But I thought I wassafe with non-aged, unfermented,unprocessed soy products. I’d had soysprouts on salad and soy ice creamfor dessert on a couple of occasionswithout any bladder problems. So Iassumed that soy was basically

alright for me, but there were just afew forms of it I had to stay awayfrom. Well, it was just as my momalways said, “Don’t ‘assume’ it’ll makean ‘ass’ out of ‘u’ and ‘me’”.One day last winter I was feelingfat and wanted to lose a little weight.I decided to shave some calories frommy diet by substituting low-caloriesoy milk for my regular milk atbreakfast. I bought a quart of soymilk and began using about a cupdaily. At first, there seemed to be noproblem. Like Lillie, I had neverexperienced a flare that didn’t comeon within hours or a day or so atmost. After several days went bywith no increase in bladder symptoms,I felt safe in using the soy milk.Then about two weeks into myplan my bladder began to get worse.And worse...and worse. I becamesuper-paranoid about sticking to mydiet. I watched my fluid intake, mystress levels, how much driving andsitting I did. I began wearing looserclothing. I exercised like crazy. ThenI tried avoiding all exercise. Ichecked for infections. I reduced mymedications. Then I doubled up onthem. I checked and rechecked allthe inert ingredients in all my medications.I stopped wearing perfume,I changed soap, I changed laundrydetergent. Nothing, but nothing,made even the tiniest dent in themiserable and constant bladder painI was in. What’s more, my facialcomplexion was a mess, I would getweepy and cry at the drop of a hat.My breasts ached a bit like they didwhen I was I was pregnant with mykids. I was crabby like I had PMS. Itwas downright weird. In fact it wasalmost like the time I tried reducingmy estrogen supplement by half.(After having my ovaries removed inmy thirties, for years I’ve had to takeestrogen in pill form as a replacement.)Sure enough, as soonas I gave up drinkingthe soy milk, mybladder graduallybegan to improve,though it took abouttwo weeks to get backto normal.As I thought about my body’sreactions to shifting hormones, thelight bulb suddenly went on in thedim reaches of my brain’s cobwebbedattic.The low-friction catheter...for a smooth insertion and withdrawal.With the LoFric H2O, using a catheter is easierand more discreet than ever.• Slim & lightweight design• Hygienic & convenient• Folds down to fit inside a shirt pocketThe LoFric catheter has been on the market for more than20 years and its reliability has been proven in numerousclinical studies. It’s the only one in its class—reduces urethralfriction up to 95% compared with other catheters, which helpsreduce the risk of infections and long-term urethral complications.Call today for a free sample, toll-free: (877) 456-3742.GIVE US A TRY!THE IC OPTIMIST • SPRING 10 • 23

Phytoestrogens and the IC BladderPhytoestrogens are plant substancesthat mimic the health effectsof the estrogen produced by our ownbodies (men also produce someestrogen, though not as much aswomen do). Soy is loaded with theseestrogen-like substances. The welladvertisedhealth benefits of soy’sphytoestrogens and phospholipidsare one reason soy is such a popularadditive in many of today’s manufactured,canned, or frozen foods. Soy isperceived as healthy. Soy sells. Andfor that reason alone, it’s becomingincreasingly hard for consumers toavoid.Sure enough, as soon as I gave updrinking the soy milk, my bladdergradually began to improve, thoughit took about two weeks to get backto normal. Like Lillie, I found thatthis ‘stealth’ effect of soy was slow tocome on and slow to go away.Gradual change is much harder toperceive, and the cause of it muchharder to pinpoint.But wait, there’s a flip side to this.Some womens’ IC gets worse withpregnancy and some women get betterwith pregnancy. Some women getworse when they take birth controlpills and some get better. Somemenopausal women have IC flareswhen they take estrogen supplementsand some find their IC getsbetter when they're on estrogen.Some women have IC flares justbefore their period, and others getflares when their period ends. (Thelatter group actually see theirmonthly period as a blessed relieffrom their pelvic pain.) Somewomen do better when they takeprogesterone supplements, others doworse. So could some of us actuallyimprove as a result of eating thesenon-fermented, non-aged soy products?According to urologist and ICresearcher Lowell Parsons of UCSD,some of the cells that comprise ICbladder tissue have estrogen receptors,and he feels that may be onereason we react to changes in ourhormonal milieu. Even as far back aseleven years ago, IC researchers likeTufts University’s Dr. Theoharideswas investigating bladder mast cellsin IC and noting that estrogen stimulatedthese inflammation-causingcells of the immune system (“MastCell Research at Tufts University”,ICA Update (summer 1991), page5). The scientific evidence seems tosuggest that a beneficial effect on ICfor soy phytoestrogens is much lesslikely than an adverse one.Can plant substances really affectwomen’s hormone status? It appearsthey can, whether or not the womanhas IC. According to the non-profitscientific organization, NorthAmerican Menopause Society, and arecent article in the Wall StreetJournal (7/8/02, Ron Winslow &Geeta Anand, “More Options andUnknowns”) phytoestrogen productsare popular among women who wantto treat menopausal symptoms suchas hot flashes, but don’t want to usesynthetic pharmaceuticals. Both soyproducts and the herb black cohosh(cimicifuga racemosa), contain substantialamounts of phytoestrogens.In a review of several studies of...for those of us in thetrenches, hidden soy inthe foods we eat maybe something to keepin mind when we golooking for the causeof an intractablelong-term flare.black cohosh, one doctor found reasonableevidence for its use formenopausal symptoms. (“A review ofthe effectiveness of Cimicifuga racemose(black cohosh) for the symptomsof menopause”, Journal of Women’sHealth, 1998). Chaste berry (vitexagnus-castus) and flax seed oil(linum usitatissimum) may alsoaffect women’s hormonal status,though that hasn’t been firmly establishedin clinical trials yet.Unfortunately, even less research hasbeen done on the long term effectsof these plant-based substances thanhas been done on the prescriptionpharmaceuticals. (Physicians’ DeskReference (PDR) for HerbalMedicines, Medical Economics Co.,2001).The Bottom LineWhether or not there is a subsetof the IC population who is actuallyhelped by eating soy products, Idon’t know. There does however,appear to be a quite a few IC peoplewhose bladders react negatively tosoy, even when it has not been agedor fermented (as soy sauce has). Apossible hormonal connection to ourdietary difficulties would be anintriguing research subject to exploretoo. But meanwhile, for those of usin the trenches, hidden soy in thefoods we eat may be something tokeep in mind when we go lookingfor the cause of an intractable longtermflare. And given the latesttrends in food marketing, more of usthan ever may be dealing with thesesoy-triggered IC flare-ups.24 • THE IC OPTIMIST • SPRING 10

Book ReviewIC Naturally: A Natural Remedy Approachto the Treatment of Interstitial Cystitisby Jill Osborne, MAIt is with delight that I introducea new book to you, IC Naturally: ANatural Remedy Approach to theTreatment of Interstitial Cystitis,written by IC patient Diana BradyMA CNC. Diana, a certified nutritionalconsultant, has been involvedin the IC movement for decades andwas one of the original advocates forthe use of natural remedies in themanagement of bladder symptoms.She has been featured in the ICAUpdate, the International Academyof Nutrition and PreventativeMedicine and the AlternativeMedicine Women’s Health Series.After several years focusing on family,Diana has come back to the ICmovement to share her knowledge ofnatural and alternative therapies,sharing the protocol that she hasdeveloped and recommended tocountless IC patients over the years.The book offers one of the bestdescriptions I’ve read about theanatomy of the bladder and howinjury to the bladder wall creates ICsymptoms. Her discussion of themany events that can trigger IC painis eye opening as she discusses stress,hormones, bladder jarring, mold,allergens, foods, infections, sex, environmentaltoxins and much more.She explains how mast cells vs.nerves can cause bladder symptomsand/or pain. Fermented food productscontaining tyramine createflares by triggering mast cells torelease histamine whereas stress,some food preservatives, excitatoryagents (i.e. caffeine, potassium, msg)and even cold weather stimulate thenerves in the bladder wall thus causingdiscomfort.The book provides a thoroughdescription of various natural remediesand how they may or may notapply to the IC patient includingvitamins, herbs, minerals, plant compounds,enzymes, homeopathy andmore. She does disagree with someconventional opinions about vitamins.In her discussion of vitaminB6, she urges patients to take nomore than 2,000 milligrams a day.While she advises caution, we feelthat a stronger warning would havebeen more appropriate as B6 haslong been reported to trigger ICsymptoms in some patients. You, asthe patient, should consider any conflictinginformation carefully.Chapter four is dedicated to thetreatment of IC symptoms and it isthis chapter that I found myselfoccasionally uncomfortable with.The author makes some bold statementsand offers a wide variety ofproduct recommendations that I wasjust unfamiliar with, such as the useof an Essiac Tea and Moducare (aplant sterol product) to support theimmune system. I am entirely unfamiliarwith either and have no experiencewith their use.She pushed one of my consumeralert buttons by promoting the use ofa flexible magnet. Yet, upon furtherreview, there is a marginal case tosupport their use. The NationalInstitutes of Health NCCAM websiteoffered the following:“Preliminary scientific studies of magnetsfor pain have produced mixedresults. Overall, there is no convincingscientific evidence to support claims thatmagnets can relieve pain of any type.Some studies, including a recentNational Institutes of Health (NIH)clinical trial for back pain, suggest thepossibility of a small benefit from usingmagnets for pain.” (1) Will magnetshelp reduce IC pain? I have no idea.Please note that patients with anymedical devices such as nerve stimulators(i.e. Interstim) or pacemakersshould never use magnets becausethey can interfere with the functioningof the device.I can’t say that her approach isbetter than, perhaps, the protocolsuggested by Dr. Tori Hudson in theWomen’s Encyclopedia for NaturalMedicine. Neither claim that theycan “cure” IC. What I can say is thatif you are interested in a more naturalapproach to treating your bladdersymptoms, IC Naturally will giveyou much food for thought. Asalways, I strongly encourage you towork closely with your personal medicalcare provider as you considervarious treatment approaches. Onlymedical providers that work withyou directly can and should give youmedical advice.Reference: (1)http://nccam.nih.gov/health/magnet/magnetsforpain.htmTHE IC OPTIMIST • SPRING 10 • 25

What’s New in the ICN Shop?New Book Released:IC Naturally - A Natural Remedy Approach To The Treatment of ICAuthor: Diana Brady MA CNCSummary: We love it when well written books are released that help build ourknowledge about interstitial cystitis. If you’re into treating IC naturally, thisbook offers a wealth of information and a wide variety of ideas that you mightbe interested in pursuing! As always, we want to remind you that no book shouldbe considered a source of medical advice. We encourage you to read it, research it,and, of course, talk with your personal medical care team about treatments you’dlike to explore.ICN Shop Price: $35.99 with 15% off for ICN Angel SubscribersHeathers Tummy Fiber Refill One Pound BagsWe listened to your feedback. Why order a new tin every time you need a refill for this marvelous fiber?Heather’s Tummy Care now offers a one pound refillable bag that refills the tin perfectly each time. It’s easierto store and ship too!Insoluble fibers, such as those found in granola, bran cereal, lettuce and psyllium husk, are too harsh for oursensitive gut and are well known for triggering IBS flares. We need soothing, soluble fibers to keep the bowelmoving consistently and without painful spasms and cramps. Heather’s Tummy Fiber is a natural, pure,organic, soluble dietary acacia fiber ideal for patients struggling with irritable bowel syndrome.Clinical studies have shown that soluble fiber, as part of the diet:• Helps soothe and regulate bowel motility• Relieves IBS abdominal pain and cramping by stabilizing intestinal contractions• Alleviates BOTH diarrhea and constipation• Increases good gut flora - it’s considered a prebiotic, and significantly bifidogenic• Slows down colonic fermentation (decreasing gas and bloating)• Is completely safe and healthy for daily, lifelong use, even children• Is a traditional remedy for pregnancy/post-partum nausea & bowel dysfunction• Has no gluten, sugar, salt, artificial sweeteners, citric acid, oxalates, or yeastICN Shop Price: $15.95 with 15% off for ICN Angel SubscribersIC Friendly Sweet Teas• Do you miss your jug of sweet tea?• Does your instant tea mix irritate your bladder?• Looking for something light and refreshing?With the arrival of warmer days and nights, it’s time to start thinking about what you’dlike to drink on those hot, lazy afternooons of summer. If you're in the South, you’veprobably grown up on Sweet Tea only to discover that it can be very bladder irritating.Davidson’s Teas has a line of organic herbal teas that come in several IC friendly flavorsand work beautifully as iced or sweet teas. From Carob Mint, reminiscent of a chocolatemint julep, to Caramel Peach with Coconut to the light, refreshing and honey sweetenedFrench Vanilla tea, were sure you’ll enjoy trying some of these!Each box contains 25 tea bags.ICN Shop Price: $5.50 with 15% off for ICN Angel Subscribers26 • THE IC OPTIMIST • SPRING 10

About UsThe Interstitial Cystitis Network is a health education company dedicated to interstitial cystitis and other pelvic paindisorders. Our mission is to present the best research, information, and support directly into the homes and officesof our users (patients, providers & IC researchers). In addition to our magazines and newsletters, the ICN offerscomprehensive support services for patients in the USA and Canada, including the ICN support forum(www.ic-network.com/forum/), bimonthly live support chats (www.ic-network.com/chat/), our patient assistance phoneline and the “Living with IC” educational video series currently available on YouTube (www.youtube.com/icnjill/).Our contact information:Interstitial Cystitis NetworkPO Box 2159Healdsburg, CA 95448 USA.Orders: 707.433.0413Patient Assistance: 707.538.9442FAX: 707.538.9444Facebook: www.facebook.com/icnetworkTwitter: www.twitter.com/icnjill/The IC Optimist is published four times a year and isavailable by US Mail ($60/year) or e-mail ($30/year).Professional subscriptions are also available.Material contained in the IC Optimist is copyrighted, allrights reserved. It may not be reproduced in whole, or part, withoutadvance written permission. Reprint requests shouldbe directed to: newsletters@ic-network.comWhat is IC?Interstitial cystitis (IC), also known as painful bladder syndrome,bladder pain syndrome or hypersensitive bladder syndrome is acondition that results in recurring discomfort or pain in the bladderand the surrounding pelvic region. The symptoms can vary greatlybetween individuals and even for the same person throughout themonth, including an urgent need to urinate (urgency), a frequentneed to urinate (frequency) and, for some, pressure and/or pelvicpain. People with severe cases of IC/PBS may urinate as many as 60times a day, including frequent nighttime urination (nocturia).Pain levels can range from mild tenderness to intense, agonizingpain. Pain typically worsens as the bladder fills and is then relievedafter urination. Pain may also radiate to the lower back, upper legs, vulva and penis. Women’s symptoms mayfluctuate with their menstrual cycle, often flaring during ovulation and/or just before their periods. Men and womenmay experience discomfort during or after sexual relations.IC affects patients of all ages, races and cultures. It is found on every continent in the world. Though it was previouslythought to be a disease affecting mostly women, new studies suggest that men suffering from chronic non-bacterialprostatitis may also have IC, thus dramatically expanding the population data. It is not unusual for IC to run infamilies, nor for patients to struggle with a syndrome of related conditions including: IBS, anxiety disorder, vulvodynia,pelvic floor dysfunction, allergies, migraines and fibromyalgia.There are many treatments and self-help strategies now available that can help improve bladder symptoms dramatically.One excellent place to gather information is on the IC Network website (http://www.ic-network.com), where you canread extensive articles on IC as well as participate in our support forum and chats.We welcome you! We believe in you! You are not alone!THE IC OPTIMIST • SPRING 10 • 27

My Mom HasInterstitial CystitisA PAINFUL BLADDER STORYAges 6+includes ten funhome activities &a big word hunt!Helping children understand IC, bladder basics,the IC diet, doctor visits, medication safety andhow they can help around the house.Written By Jill Heidi Osborne, MANOW AVAILABLE$12.50 in print - $10 by email