The IC Optimist published by the Interstitial Cystitis Network • volume 14, issue 4 • Fall 2017 The Chilling Effect of the CDC Guidelines for Chronic Pain Taking Charge of Pain: Tips & Strategies for Working With Your Doctor Urethral Diverticulum: An Unusual Cause for IC & Pelvic Pain Symptoms How To Stop a Diet Induced Flare IC Diet Project: Simple & Savory Holiday Dishes

Departments Editorial: ESSIC 2017 - My Daughter’s Journey With IC Latest IC Research • Latest Clinical Trials • Self-Help Tip •Consumer Alerts The IC Optimist from the editor Publisher: Interstitial Cystitis Network PO Box 2159, Healdsburg, CA 95448 800-928-7496 (Toll-free) If you hadn’t already heard, the IC Network offices (707) 538-9444 (F) were in the center of the devastating fires that www.ic-network.com occurred in Santa Rosa, California in October 2017. Without power, internet, phones and even cell Subscriptions, Copies & Reprint Requests: Single issues are available for purchase. phones, we had no choice but to close our main http://www.icnsales.com office for almost a month, hence the delay in the pro- duction of this magazine. With thousands of homes Featured Writers: and businesses burned, we’re only just now getting Jennifer Gonzales MSN, APN, ACNS-BC back up to speed. Thank you to everyone who sent Samuel Granpsas MD prayers and offers of a safe place to stay. You helped Jill H. Osborne MA Stacey Shannon keep our spirits up while we were incredibly stressed Bev Laumann and, at one point, running for our lives. What a year Bryan Mac Murray this has been! ::sigh::: Gail Benshabat This issue of the IC Optimist covers a very delicate topic - how the lives of IC patients have been disrupted with the implementa- Image Credits: tion of the CDC Guidelines for opioid use in chronic pain. My editorial Cover: © feedough “Corruption Undenied” shares the story of a DEA whistleblower who cooper- p. 3: © Sevulya p. 4: © vchal ated with Sixty Minutes and the Washington Post in a shocking expose about p. 8: © Popartic the opioid crisis. Our own Congress & Senate have made the problem substan- p. 9: © Beaumont Urology tial worse by crippling DEA investigations. p. 10: © Beaumont Urology The harsh reality is that opioid crisis is being driven by diverted pharmaceu- p. 13: © XiXinXing ticals, the international black market (China) and the illegal drug trade. But, p. 14: © Stacey Shannon you’d never know that by reading the CDC Guidelines which place the blame p. 15: © Jill Osborne squarely on the shoulders of the legitimate pain patient despite research studies p. 24: © elmosaico p. 27: © karandaev showing that chronic pain patients rarely become addicts. Chronic pain p. 28: © Vima providers and patient groups are outraged, pointing to remarkably biased and p. 29: © Bella Rosa Coffee Co. “bad science” incorporated into the guideline process. In our feature story, we give the history, talking points and the results of our own ICN survey. The Design & Production: patient stories are shocking. We MUST fight back! In the follow up article, Tapia Studios (707) 545-7741 “Taking Charge Of Pain,” we include dozens of tips to help if you are strug- Featured Sponsors: gling with pain and working with your physicians. Aquinox Pharmaceuticals IC patients are a mystery to be solved. Where is the pain and/or discomfort www.aqxpharma.com coming from? Is it the bladder, the muscles, the nerves or perhaps something Beaumont Urology else? In “When Bladder Treatments Stop Working”, we review how the differ- www.beaumont.edu/urology ent IC/BPS subtypes can generate slightly different symptoms and require dif- ferent treatment approaches. There are cases where patients have been misdiag- Desert Harvest http://www.desertharvest.com nosed. We share a case study of a patient diagnosed with IC for over ten years who actually had a urethral diverticulum instead. She is now pain and Prelief/DSE Healthcare LLC symptom free. http://www.prelief.com In the latest IC research, we review some of the more exciting new studies Vista Urology released in the past few months, including a possible new urine test which www.vistaurology.com could diagnose a Hunner’s lesion thus saving patients from having to undergo CystaQ® (and pay for) a hydrodistention with cystoscopy. http://www.cystaq.com We sponsored Gail Benshabat’s trip to the ESSIC meeting last September. In this issue she shares her daughter’s story and is dedicated to improving IC care We welcome freelance query letters and ad submissions for our publications and websites. in Canada. For additional info: (707) 538-9442 or email If you are pondering applying for disability insurance, we have an article [email protected] written by a disability expert that can help you understand the steps necessary for a successful application. The IC Optimist is distributed electronically or In celebration of the holidays, IC cookbook author Bev Laumann shares in print format four times a year to subscribers of the Interstitial Cystitis Network, a medical some fabulous yet simple recipes for some holiday meals. publishing company dedicated to providing From our homes to yours, we wish you a peaceful, joyful holiday season. information & support for those struggling with May 2018 bring you and our country healing, hope, love and laughter. interstitial cystitis, overactive bladder, painful bladder syndrome and pelvic pain syndrome. —Jill, Janice, Donna, Heather & Jenna (the ICN Family) The ICN is a division of J.H. Osborne, Inc.

2 • THE IC OPTIMIST • Fall 17 c o n t e n t s 4 ICN Editorial Corruption Undenied by Jill Heidi Osborne MA 5 The Chilling Effect of the CDC Guidelines for Chronic Pain Some IC Patients Being Forced Off Pain Medication Without Warning by Jill Heidi Osborne MA 12 Taking Charge of Pain Tips and Strategies for Working With Your Doctor by Jill Heidi Osborne MA 16 What Patients Are Saying About CDC Guidelines 18 When Bladder Treatments Don’t Work by Jill Heidi Osborne MA 19 Consumer Alert 20 The Latest IC Research 22 An Unusual Cause of IC & Pelvic Pain Symptoms by Jennifer Gonzalez MSN, APN, ACNS-BC & Samuel Granpsas MD 24 Self-Help Tip How To Stop a Diet Induced Flare by Jill Heidi Osborne MA Copyright © 2017. Any reproduction is prohibited without 25 ESSIC Meeting prior written permission from the ICN. My Daughter’s Journey With IC Disclaimer: The Interstitial Cystitis Network website and by Gail Benshabat publications are for informational purposes only. The IC Network is not a medical authority nor do we provide any 28 How to Qualify for Disability Benefits medical advice. Nothing contained in this publication with Interstitial Cystitis should be considered medical advice and should not be relied upon as a substitute for consultation with a qualified by Bryan Mac Murray medical professional. We strongly recommend that you discuss your medical care and treatments with your 30 Santa Rosa Fire Update personal medical care provider. Only that medical by Jill Heidi Osborne MA professional can, and should, give you medical advice. 31 Clinical Trial Announcements Opinions expressed in articles are those of the authors and do not necessarily reflect those of the ICN or its 32 The IC Diet Project editorial board. The ICN assumes no liability for any material published herein. Simple & Savory Holiday Dishes by Bev Laumann THE IC OPTIMIST • Fall 17 • 3 ICN Editorial Corruption Undenied by Jill Heidi Osborne MA

This Fall, Sixty Minutes and the Washington Post released a stunning documentary that laid the blame of the opiate crisis on a surprising new source: the US Congress & Senate who passed a bill which virtually crippled the ability of the Drug Enforcement Agency to investigate drug traffickers. It’s a classic case of corporate interests manipulating, through lobbying and cash dona- tions, our laws to benefit their ability to make a buck. It’s also a disgusting abuse of power that has directly caused the deaths of thousands of citizens. Remember when the Tobacco companies admitted that they increased nicotine levels to increase addiction? This is far, far worse. One distributor alone shipped 28 Today, we now know that the Sixty Minutes interviewed Joe million pain pills to pharmacies in opiate crisis has irrefutably damaged Rannazzisi, one of the most impor- West Virginia over a five year period, two generations. Millions of pills tant whistleblowers in US History. He 11 million of which were sent to were diverted from legitimate use to ran the DEA’s office of Diversion Mingo County with a population of recreational use resulting in tens of Control, a division that regulates and just 25,000 residents. thousands of addicts. More than 100 investigates the pharmaceutical Mr. Rannazzisi shared that when people die each day by overdosing industry. Ranazzisi shared how the the bigger distribution companies on opioids with an estimated half opioid crisis was allowed to spread started being targeted by the DEA, million to die across America over when the US Congress actually they mobilized cash and lobbying the next decade. limited his ability to investigate com- power to fight back. They went over The secondary victims of the panies that were shipping hundreds Joe’s head to the Department of opioid epidemic are the legitimate of millions of pills to suspicious des- Justice and complained. pain patients who are no longer tinations where they were ending on Investigations were then slowed if being given the medication that they on the streets. Why? Because the not stopped by higher level staff in have used responsibly with no signs pharmaceutical industry is a power- the DEA. Worse, former DEA litiga- of addiction. They are being driven ful lobbying force with plenty of tors and investigators changed sides, to the streets to buy heroin as a money to spend. accepting jobs with high salaries with replacement and many have pon- “This is an industry out of control” the drug companies they had origi- dered suicide. Chronic pain groups he said, saving most of his anger nally investigated. around the country continue to towards the drug distribution compa- The drug distribution industry demand that the CDC rewrite their nies (Cardinal Health, McKesson & wasn’t done. They then proposed a guidelines to support those patients Amerisource Bergenn) who were new law which eliminated the ability who use opiate medication appropri- ignoring their responsibility under of the DEA to freeze suspicious ship- ately. I couldn’t agree more. the controlled substances act to ments. They claimed that the DEA My second college degree was in report and stop suspicious orders. was preventing legitimate pain Pharmacology, the science of drug “Their goal was to sell a lot of pills and patients from getting their essential development. I couldn’t be more make a lot of money… Greed trumps pain medication. The bill received ashamed of that industry today. We compliance every time,” said Jim little in the way of public and DEA must speak out. We must fight back. Geldof, a Pharmaceutical Investigator scrutiny, without a single committee We must wrest control of congress for the DEA who reported to Joe. hearing held. Rather, it was passed away from “big pharma” who care Case in point was a pharmacy in by unanimous consent by both the more about their profits than the Kermit WV, with a town of 392 Senate & Congress, and was eventu- health and safety of the people of our people, that ordered 9 million ally signed by President Obama with country. Will you stand with me? hydrocodone pills over two years. no registered objection.

4 • THE IC OPTIMIST • Fall 17 The Chilling Effect of the CDC Guidelines for Chronic Pain Some IC Patients Being Forced Off Pain Medication Without Warning by Jill Heidi Osborne MA

When the Centers For Disease Control (CDC) issued their Guidelines for the Treatment of Chronic Pain, they had a noble intent – to reduce deaths relating to opiate overdose.1 “With approximately 142 Americans dying every day, America is enduring a death toll equal to September 11th, every three weeks,” according to the Commission on Combating Drug Addiction and the Opioid Crisis.2 Drug overdoses are killing people at a faster rate than the HIV epidemic at its peak.3 Who is to blame? The pharmaceu- tical industry for distributing mil- lions of pills, often to shady pharma- cies? The black marketeers in China Essential History embarked on an aggressive campaign who are illegally exporting tons of In the mid 1990’s, the American to market a new and highly addictive fentanyl, an opiate 100x stronger Pain Society proposed the concept of opiate medication, oxycontin, stating 6 than morphine, into the USA?4 The pain as the “fifth vital sign.” They that “They don’t wear out; they go on drug cartels and illegal drug pushers believed that pain patients were working: they do not have serious for cultivating addiction in their being under treated because physi- medical side effects… these drugs are users? Or pain patients who take cians weren’t actively asking about our best, strongest pain medications, pain during office visits and even should be used much more that then are medication and become addicted? 7 Despite research showing that less hospital stays. The concept was for patients in pain.” And, much to than 1% of chronic pain patients quickly endorsed by various medical their delight, pain medication pre- without any history of opiate addic- organizations who implemented new scriptions increased, dramatically tion become addicts5, the CDC pain screening tools and methods. through the 1990’s and 2000’s. By Guidelines place the blame almost Pain patients were thrilled that they 2011, doctors had written 219 entirely on their shoulders and has were being treated more compassion- million prescriptions. In 2012, 259 issued guidelines that dramatically ately. million prescriptions were written. In The pharmaceutical companies fact, the USA consumes 85% of reduce and restrict opiate prescrip- 8 tions even for those patients who saw the potential for profit. They opiates produced in the world. have used the medication safely, began developing more pain medica- The illegal drug trade also took effectively, in low doses with no signs tions and funding publications to notice, setting up marginal “pain of addiction. encourage their use that minimized clinics” around the country that their risk. In 1996, Purdue Pharma operated on a cash and carry basis,

THE IC OPTIMIST • Fall 17 • 5 prescribing tens of thousands of pain medications indiscriminately. Similarly, some pharmacies were corrupt. One pharmacy in Kermit, West Virginia (population 400) received 9 million opioid pills.9 Chinese black marketeers began sending tons of synthetic opioids into the USA for the illegal drug market. Even the Mexican drug cartels started pushing opiates, lacing heroin and others with a splash of fentanyl for the high that it pro- duces. Today, nearly 2.6 million Americans struggle with opioid addiction, their brain function dra- matically changed. “Neurologically speaking, opioids are crafty. They turn the brain’s own electricity against it, rewiring connections in an endless feed- back loop for more drugs,” offered Dr. Sandra Block, a neurologist in Buffalo New York. Drug addicts need medication to feel good. They usually have intense urges for the drug that block out other thoughts. medication should be monitored for of opioid medication. Many now They may spend money on the drug addiction and misuse, but I think it’s simply refuse to provide pain care even though they can’t afford it. They time to stop looking at all IC patients while others are more compassionate cannot meet obligations or work like they are drug addicts… I would and suggest opioids and/or other responsibilities. Addicts often cut much rather have a pain free life strategies to reduce suffering and back on social activities and/or may without medication…. I was honorably restore quality of life with a special commit risky activities when they are discharged from the military because of focus on improving a patient’s ability under the influence of the drug, such IC. As someone who has done all the to function in their daily lives. Dr. as committing a robbery for money diets, tried all the medicines, partici- Daniel Carr, President of the 10 to pay for drugs. pated in therapies, etc., sometimes pain American Academy of Pain Medicine, In contrast, chronic pain patients medicine is necessary no matter what.” describes it as “a civil war in the pain take opioid medication, often at the community.” He said “One group same low dose for years, so that they believes the primary goal of pain treat- can function and be active in their In contrast, chronic pain ment is curtailing opioid prescribing. families and their communities. The other group looks at the disability, Their motivation isn’t to feel the high patients take opioid the human suffering, the expense of but to suppress often agonizing pain. chronic pain.”11 And many patients report that they medication, often at the In 2015, Dr. Jane Ballantyne, pres- have never felt a high from their pain ident of Physicians for Responsible medication. same low dose for years, Opioid Prescribing (PROP - remem- One IC patient shared “I have been ber this name), and Dr. Mark on pain medication for the past 2 years. so that they can function Sullivan ignited a flame war online I honestly don’t know how I would’ve when they published a commentary gotten through daily life without it. and be active in their in the New England Journal of People don’t understand that your body families and their Medicine arguing that chronic pain is used to taking it, and you don’t get patients should first focus on their ‘high’ from it. It simply lessens the pain. communities. emotional reaction to pain before I have suffered with IC my entire life…I using medication to reduce the didn’t know I was able to have a decent intensity of their pain. “The com- quality of life. I work full time and just ments... laid bare a fundamental graduated college. I wouldn’t have been Medical Community at War problem in the debate over opioid treat- able to make it through my classes As many IC patients can attest, ments: Neither side has much evidence without pain medicine. I think that pain clinicians are divided about the use about the benefits or consequence of

6 • THE IC OPTIMIST • Fall 17 long-term use because no such studies even for patients who have used Dr. Frieden is on the record for exist,” wrote Bob Tedeschi in the them successfully, in low doses and reducing opioid prescriptions. Dr. medical blog STAT. Some studies with no signs of addiction. Originally Shank continued “the activities of have found that opioid users might suggested as voluntary guidelines for atleast 15 (and arguably 18) of the 25 struggle with an increased risk of primary care physicians, they were represent “intellectual conflicts of inter- depression, anxiety, cognitive impair- quickly adapted as mandatory guide- ests…” ment. Yet, Dr. Sean Mackey, a past lines for Medicare, Medicaid, the VA Of particular concern was the par- president of the American Academy and assorted insurance companies. ticipation of Dr. Jane Ballantyne, co- of Pain medicine and director of Richard Lawhern predicted dire author of the 2015 paper mentioned Stanford University’s pain manage- ramifications in an article for the earlier, as well as other members of ment program said that people aren’t American Council on Science and PROP. She is a paid consultant to talking about the nearly 15,000 Health.“Even more physicians will leave attorneys who bring lawsuits against people who die per year from using pain management practice, throwing pharmaceutical companies who anti-inflammatory medications. He thousands of patients into the street produce opioids and stands to gain said “Opioids are a tool - they’re more without medical referral or support from the new guidelines in the form of a fourth or fifth line option for me” as when they go into opioid withdrawal…. of more lawsuits. Dr. Shank wrote he explores pain treatments with his potentially millions more patients will be “She is one among seven contributors to patients. forcibly tapered down or cut off cold- the CDC guidelines who is also a signa- turkey, plunging them into agony and tory to a letter, on PROP stationary, disability when they can no longer work demanding that the FDA discriminate Chronic pain experts or maintain family relationships due to against ‘non-cancer pain’… demanding the under-treatment of their pain.”13 that opioid therapy be limited to low have urged the CDC to He and other chronic pain experts doses for a maximum of ninety days.” have urged the CDC to withdraw the withdraw the guidelines guidelines until they are rewritten in an “effort led by pain management spe- until they are rewritten cialists, not addiction psychiatrists. Pain It appears that the CDC patients or their advocates should be in an “effort led by voting members of the writers group.” committee was stacked pain management Dr. Myron Shank and others have in favor of those who criticized the CDC process for poor specialists, not addiction science, conflicts of interest and the support reducing opioid potential influence of politics. He psychiatrists.” wrote “the CDC’s description of the treatments without review process… fails to document com- pliance with, or actually documents vio- allowing for equal The CDC Guidelines Under lation of, most of the IOM’s standards Scrutiny for systematic reviews.”14 They participation from Our government turned to the excluded all studies conducted chronic pain providers. Center for Disease Control and outside of the USA. They focused on Prevention (CDC) to develop and studies about the dangers of opiate issue opioid prescription guidelines. use while minimizing studies which This was unusual because govern- showed benefits. They failed to It appears that the CDC commit- ment agencies rarely issue clinical include any opioid study that lasted tee was stacked in favor of those who care guidelines. Normally, profes- less than a year. Yet, they did not support reducing opioid treatments sional medical associations convene reject studies of non-opioid medica- without allowing for equal participa- panels of experts to neutrally review tions that lasted less than a year. tion from chronic pain providers research studies and create guidelines He argued that the CDC guideline who would have provided insight without bias, such as the American process was also politically tainted. into those patients who safely and Urology Association’s Guidelines for Out of 25 contributors and reviewers appropriate use opiate medication. the Diagnosis and Treatment of of the the CDC Guideline committee, Chronic pain specialists, advocates IC/BPS.12 “Seven have highly questionable creden- and patients have now embarked on The end result was the CDC tials. Another ten are overtly hostile a campaign to have the guidelines Guidelines for Prescribing Opioids towards opioid analgesic while there is revised. Surveys have collected tens for Chronic Pain. Released in 2016, indirect evidence for such hostility in of thousands of signatures for letters the document stunned chronic pain three more. Only five have credentials delivered to the current administra- clinicians, patient groups and pain and points of view that are distinct from tion. One survey author wrote “The experts by recommending dramatic the public positions of the CDC’s direc- implementation of the FDA and CDC’s reductions in opioid prescriptions tor, Tom Frieden” argued Dr. Shank. ‘Opioid Prescribing Guidelines’ has

THE IC OPTIMIST • Fall 17 • 7 turned this country’s failed ‘war on drugs’ into a ‘war on pain patients.’ We have been closely monitored, drug tested and interrogated on the regular for years and even after successful progress, consistent results, and unwavering dedi- cation to follow all the rules, we are being cut back and often times cut off all pain medications that make daily life liveable.”15 Patients are also becoming staunch, informed advocates who are furious that the news media is focus- ing less on actual research and more on medical media personalities. One patient, Donna J, summarized the issue: “PROPaganda … [PROP = “Physicians for Responsible Opioid Prescription”, a professional group deeply hated by large numbers of pain patients]… has confused and conflated two different medical issues, chronic pain and drug addiction, as well as padding the numbers by equating pre- scription medication with illicit heroin and fentanyl… To top it off, they delib- erately throw together addiction, dependence, and tolerance as if [they’re] all the same. It’s bad enough [that] this ignorance is force fed to the average citizen, but the medical community blithely goes along with this charade and abandons and destroys patients who are in desperate need of care… Instead of taking the word of rehab industry stooges, you might want to check with, oh let’s see... how about pain and Federal law-makers must introduce The Impact on the IC Community management doctors and nurses? legislation and hold public hearings to Millions of patients have been on stable In the Spring of 2017, the ICN force recall and rewriting of 2016 CDC regimens for years. How did that surveyed patients to determine if happen when ‘we all know’ that’s impos- Opioid Prescription Guidelines, and and/or how they have been impacted repeal State laws that limit treatment of by the CDC Guidelines. Survey par- sible, what with all of us needing 17 increasing doses to oblivion and back chronic pain patients.” ticipation is skewed to those patients due to tolerance? Dr. Shank believes that the who struggle with pain and those I’ve been on opioids for12 years, still National Pain Strategy document who have found their medication not an addict, still passing urine analy- released by the National Instates of reduced or discontinued. Clearly, the ses, pill counts, compliant and coopera- Health in 2010 is far more effective data cannot be used to make broad tive. But I’m the one who isn’t allowed than the CDC Guidelines.18 It sug- conclusions about the IC patient HIPAA privacy and must sign away my gests that instead of applying general community as a whole. rights… [I’m] not allowed to participate and broad restrictions on prescrip- Most patients participating in this in treatment decisions, just do as I’m tions of opioid analgesics for chronic survey have more intense pain that told; not given any trust or respect, and pain, they should be prescribed to has reduced their ability to function … treated like a criminal.”16 those patients who clearly demon- and/or work. Some have struggled to In the National Pain Report, Dr. strate significant functional improve- find medical care providers who will Richard Lawhern called for unity and ments because of them. He argues treat their pain. Even doctors who congressional intervention. He urged that patients and their physicians believe that their pain is intense have legislators and physicians to listen to deserve guidelines that they can told patients that they must reduce their patients, not the CDC. “State trust. their dosages and/or stop pain med- ication because of the CDC guide- 8 • THE IC OPTIMIST • Fall 17 lines. Most patients are deeply no one else will help me. If I walked in have taken the same doses of tramadol worried about future pain treatment. today I wouldn’t get anything. My pain and diazepam for the past ~8 years, is very severe and I have no advocate to now. It does a pretty good job of control- Widespread Effects explain this to the government. I’m not ling the pain so I can function. I have Of the 386 patients who com- addicted and not abusing. I’m in dire never taken an increased dosage of pleted the survey, 50% experience pain.” either, and always take less than the pain daily and 42% experience pain amount which is prescribed. However, I every hour of the day. 6% reported feel like I am treated like a common pain once a week. Only 4% of patients were criminal – drug tested, given a hard The majority of those patients time about refills, people assume I take (55%) reported that their pain levels told that their doctors the Valium for “nerves,” etc. It is humili- are moderate and stop them from ating to be treated in this manner, and doing their daily tasks and/or work were concerned that they this is at a major university medical that they need to do. 28% say that center. Unfortunately, the one urologist their pain is so intense that they may have developed there who specialized in IC left a couple rarely leave their homes. 17% said an addiction to pain of years ago, and his NP (who also that their pain was mild and that it understood what IC patients go through) didn’t stop them from doing their medicine. has retired.” daily tasks. The decision to cut off medica- Only 50% used pain medication tions was explained in several ways. daily. 11% used them once or twice Prescription Changes Some clinics told patients (32%) they per month, 8% once or twice per Clinicians gave little advance were following the new CDC guide- year, 5% one or twice per week and warning about changes in pain med- lines. Some physicians (27%) said another 5% once or twice a quarter. ication. 22% of survey respondents that they were personally choosing 12% hadn’t needed to use pain med- were told that their current prescrip- not to provide pain treatment while ication in the past year. tion would be their last. 22% were others (24%) stated that they were One IC patient wrote “I never take told that they would eventually stop worried about being targeted by the anything I don’t absolutely need. I don’t their medication and a whopping DEA for providing pain care. 9% drink or use pot so I’m not into getting 52% were simply refused any addi- were told that the doctor was con- high. Both are legal in my state and I tional pain care. cerned they were using too much don’t use either. My PC said he HAS to An IC patient shared her outrage pain medication. Only 4% of patients take me off of pain medication and that at being treated like an addict. “I were told that their doctors were concerned that they may have devel- oped an addition to pain medicine. Because opiate medications can Not All IC Patients Struggle with Pain cause drug tolerance, disabling with- drawal symptoms can occur if the It’s important that our readers their unique case of IC, their pain medication is not tapered slowly understand that not all IC patients may be more intense or chronic. down. In our survey, 44% of patients have needed or required pain med- Their stories and quotes shared were offered no transition plan and icine, nor should they assume that shared in the survey are daunting. were forced into withdrawal with no intense pain is in their future. The Please remember that their stories assistance. Only 11% of patients great challenge of IC/BPS is identi- are uniquely their own. They may were given a tapered dosage down to fying which, of several, subtypes is have other medical conditions that prevent withdrawal. causing their pain and urinary have contributed to their pain. Worry about withdrawal symp- symptoms (i.e. Hunner’s lesions, They may have untreated Hunner’s toms was common. One patient bladder wall injury, muscle dys- lesions. They may not have been shared “I feel defeated because my function, neuralgia and/or central able to afford treatment. They may doctor says he is referring me to a pain sensitization). The goal, over the be in denial and drinking a pot of specialist who will work with me to long term, is to reduce the need for coffee a day (or other acidic foods) reduce the amount of pain meds I’m pain care by treating the original which can cause more pain for source of the pain correctly. patients with a bladder wall currently on. I’m terrified of withdrawal Some of the patients who partic- subtype. By sharing this data and and my quality of life once my pain ipated in this survey have taken their stories, we hope to provide meds are gone. I will no longer be able pain medicine for years, long ammunition which can be used by to work and support my family. I don’t before the subtypes were devel- patients and pain advocates to want to live on welfare but I won’t have oped. Because they may not have demand that the CDC Guidelines a choice if I don’t have the meds that received the correct treatment for be re-written. help me to make it through the day as it

THE IC OPTIMIST • Fall 17 • 9 is. I’m terrified.” brands were mentioned, such as: with long term chronic pain because Referrals to pain clinics were made Kayala Pain Rub, Young Living pain can be reduced often dramati- for 27% of our survey participants Panaway Rub, Australian Dream cally with Hunner’s lesions treatment but they received mixed reviews. MSM oil, DoTerra Deep Blue Rub (cauterization, steroid injection, 28% of those patients who visited and Walmar’s Vagicaine (a lidocaine LiRIS/LiNKA currently in clinical pain clinics received no assistance for product). trials). their pain and were instructed to Medical marijuana and CBD oil 57% of patients had been diag- stop all medication. 32% reported are used by some patients. 11% of nosed with pelvic floor dysfunction. that the clinics had no experience participants shared that it’s legal in Of these patients, 3% said that physi- with IC and didn’t believe that IC their states and they have a prescrip- cal therapy dramatically improved could cause severe pain. Only 30% tion for it. 8% say that they’ve tried it their pain. 24% said it helped reported that they were respectful even though it’s not legal. 72% have improve one of their pain and 22% and provided some pain medication. not tried any medical marijuana said it didn’t help. 28% were unable Only 11% reported that the pain products. Of those who use MMJ, to try physical therapy because it clinic had helped them find new 6% said that it helped greatly and wasn’t covered by their insurance or ways to manage their pain. It’s not they no longer need other pain medi- they couldn’t find a physical therapist unusual for pain clinics to refer cine. 23% report that it does help to help. patients back to their primary care reduce their pain but they still need providers for pain treatment. some pain medication. 12% reported Diet that it did not help their pain at all. Eighty percent of participants Several patients noted that they were reported that some foods make their 32% reported that the unable to try MMJ because their pain symptoms worse and that they avoid clinic requires monthly urine testing those foods. Tragically, 11% reported clinics had no experience and that they would be kicked out of that they eat acidic, irritating foods the clinic if they tested positive for or beverage even though they cause with IC and didn’t believe it. pain not understanding that they One patient uses CBD pills. “IC could be perpetuating bladder wall that IC could cause has changed my life in EVERY dimen- injury and neuroinflammation. We severe pain. sion. It is horrific that this level of pain often see this in patients with is considered “part of IC” and we are Hunner’s lesions and/or bladder wall not given real pain relief. After 5 years injury who continue to drink coffee, 77% of survey respondents are of IC, the ONLY true pain relief I’ve had tea or soda on a daily basis. It is diffi- very worried about their future pain is CBD pills - the non psychoactive part cult if not impossible for the bladder care while 17% are somewhat of marijuana that helps with pain. $1 a wall to heal when it is being irritated worried. Only 5% are not worried. pill but it works, but then wears off. by high amounts of acid each day. Pain medicine allowed many Tramadol helps but gives me a little Not surprisingly. 9% reported that patients to continue to work. One “high” I don’t like and makes me too foods have never bothered their blad- patient shared “I am concerned that I hyper, then sleepy. Please tell people ders clearly reflecting that their may have to stop working in the future about medical marijuana or CBD!” IC/BPS subtype is probably muscular when pain is too severe and I don’t have rather than bladder wall driven. adequate medication to treat it.” Location of Pain It’s always interesting to ask References OTC Products patients if they know where their 1. CDC Guideline for Prescribing Opioids Given the more intense pain levels pain is coming from. 73% believed for Chronic Pain. Centers For Disease Control often experienced by IC patients, it that it was coming from their bladder and Prevention. Last updated August 29, comes as no surprise that most wall (21% from Hunner’s lesions). 2017 - (81%) found OTC pain relievers Another 59% believed that their https://www.cdc.gov/drugoverdose/prescrib- unhelpful. Advil (12%), Tylenol (8%) pelvic floor was contributing to their ing/guideline.html and Aleve (6%) were modestly pain or that the pain was coming 2. Goodnaugh A. White House Panel helpful for some patients. from their nerves. Recommends Declaring National Emergency on Opiates. The New York Times. July 31, Over the counter essential oils 26% of the patients participating 2017 have a small following in the IC in the survey had been diagnosed 3. Katz J. The first count of fentanyl patient community though 56% of with Hunner’s lesions, 60% without. deaths in 2016: Up 540% in three years. participants reported that they had A remarkable 14% did not know if New York Times. September 2, 2017. never tried them. Aspercreme (10%) they had Hunner’s lesions. This is an https://www.nytimes.com/interactive/2017/0 and Tiger Balm (7%) were the important diagnostic question for 9/02/upshot/fentanyl-drug-overdose- favorites though several smaller patients to ask if they are struggling deaths.html?_r=0 4. Scipioni J. DEA: Made-in-China Lethal

10 • THE IC OPTIMIST • Fall 17 Opioid Fueling U.S. Drug Epidemic. Fox 12. Hanno, et al. Guidelines for the Legislators. National Pain Report. August 11, Business. March 31, 2017. Diagnosis and Treatment of Interstitial 2017 Cystitis / Bladder Pain Syndrome. AUA 2011 18. National Pain Strategy: A comprehen- 5. Noble M et al. Opioids for long-term treat- 13. Lawhern R., The CDC Opioid sive Population Health-Level Strategy for ment for non cancer pain. Cochrane. Guidelines Violate Standards of Science Pain. 2010. National Institutes Of Health - January 20, 2010 Research. American Council on Science and http://iprcc.nih.gov/docs/DraftHHSNationalPa 6. Campbell JN. APS 1995 Presidential Health. March 25, 2017. inStrategy.pdf address. Pain Forum. 1996;5:85–8. 14. Shank M. Critique of the CDC’s Draft 7. Moghe, S. Opioid History: From Guidelines on the Use of Opioid Analgesics ‘wonder drug” to abuse epidemic. October for Chronic Pain Part One. 12/31/15 14, 2016 https://drshank.wordpress.com/2015/12/31/ 8. American Society of Addiction critique-of-the-cdcs-draft-guidelines-on- Medicine - Opioid Addiction 2016 Facts & the-use-of-opioid-analgesics-for-chronic- Figures - pain-part-one/ https://www.asam.org/docs/default- 15. Repeal the FDA CDC Opioid source/advocacy/opioid-addiction-disease- Guidelines Now - Stand United. facts-figures.pdf https://www.standunited.org/petition/repeal- 9. Eyre E. Flooded with pain pills, a WV the-fdacdc-opioid-guidelines-now) town strikes back against drug distributors. 16. Lawhern R. Doctors and Legislators: Charleston Gazette-Mail. Jan 31, 2017 l Listen to Patients, Not The CDC. American 10. Block S. What the opioid epidemic Council on Science and Health. January 24 looks like on the screen of a brain scan. The 2017 - Washington Post. Dec. 1, 2017 https://www.acsh.org/news/2017/01/24/doc 11. Tedeschi B. A ‘civil war’ over tors-and-legislators%C2%A0-listen- painkillers rips apart the medical community patients-not-cdc-10758 — and leaves patients in fear. Stat. January 17. Lawhern R. Stop The War Against 17, 2017 Pain Patients! A Point Paper for Lobbying

THE IC OPTIMIST • Fall 17 • 11 Taking Charge of Pain Tips and Strategies for Working with Your Doctor by Jill Heidi Osborne MA

Your goal is not just to treat the pain but to discover the source and cause of the pain. Focus first on your unique anatomy by asking “What specifically could be causing this type of pain?” Do you know if it’s your bladder wall or your pelvic floor or perhaps nerves? This vital question provides the foundation for your future treatments.

What do your symptoms tell you? Your symptoms provide the first clues. Pain as the bladder fills with urine that is relieved by urination points to the bladder wall and/or Hunner’s lesions as the source of pain. Pain after urination, as well as a sensation of heaviness, downward pressure, difficulty starting your urine stream or pain with intimacy usually originates from pelvic floor muscles and dysfunction. Searing, electrical pain that changes with to six months deserves more than a removed, all of her IC symptoms dis- positions (i.e. such as sitting) sug- guess. You should be asking for facts appeared. Tarlov cysts in the lower gests pudendal neuralgia and/or an gained through testing. Are urine back can also cause IC symptoms. entrapped nerve. Patients who strug- cultures negative? Has a pelvic floor Pain is a powerful justification for gle with other painful conditions assessment been completed? Is the additional testing but you also have such as IBS & vulvodynia may have bladder tender? Are muscles tight? the right to ask for some short term central sensitization (aka a more sen- For obvious bladder wall pain, has relief for any pain that might occur sitive nervous system) that is often the bladder wall been examined because of the testing, such as if you characterized by sensitive skin, food, through a cystoscopy to rule out have a hydrodistention with cys- drug and chemical sensitivity and, other potential problems. Has any toscopy. Most urologists will provide notably, a remarkably sensitive sense medical imaging been done to look pain medication after the treatment. of smell. For these patients, the goal at other structures in the pelvis, such The AUA now recommends that is to calm the down the nervous as endometriosis and so forth? hydrodistentions be performed with system. Sound familiar? These are In this issue of the IC Optimist, a lower pressure and a shorter dura- the subtypes suggested by Dr. we share the story of an IC patient tion to reduce trauma and post- Christopher Payne.1 who had suffered for years with operative pain. bladder and urethral pain. Using a Are you justifying your need for Are you guessing about what is cross section MRI of her pelvis, they pain care by tracking your symp- causing your pain or do you have eventually found a urethral diverticu- toms? facts? lum extending the length of her The American Urology Guidelines Pain that persists longer the three urethra. When it was surgically

12 • THE IC OPTIMIST • Fall 17 for IC/BPS encourage doctors to A quick visit to our website will who don’t.) assess pain at every single doctors give you many more tips that you • Grab a mirror and LOOK AT appointments. It is very important can use at home - https://www.ic- YOUR BODY and all the structures that you assist your doctor in under- network.com/interstitial-cystitis- in your crotch! For women, it’s the standing your pain by bringing both resources/ vulva, clitoris & clitoral hood, voiding and pain diaries to each urethra, vagina, bladder and rectum. Are you fighting flares & pain appointment. These should be placed For men, the penis, scrotum and early? in your medical files so that they can rectum. If something hurts, look at it The secret to fighting pain and IC track your symptoms. Remember, first. Does it look different? Is it red? pain is subjective, not objective. But swollen? have bumps? Your ability to when you bring a voiding diary that describe where your pain is could shows how frequently you urinate, point your doctor in the right way how often you are up at night that The source of your pain is quickly. also tracks your pain on a scale of 1- • Do you have any unusual symp- 10 is powerful ammunition for you the mystery you and your toms? Pain with sex? Painful arousal? to use when asking for pain care. doctor are trying to solve. Pain when sitting or driving? Pain These records are also very helpful when walking? Leakage? Tell them! for patients who are applying for dis- • When is your pain the worst? In ability insurance because they track the morning, after you eat, and/or symptoms over time. when you try to sleep? flares is to catch it as early as possi- • What helps your pain? When Are you just relying on pain ble before the pain cycle and nervous you drink water? Eat? Move? Use medication? system are fully involved. Don’t wait heat? Use cold? Use an OTC pain Pain care is not just about using until you are crying before you act. relief product? pain medication. It’s about using The ICN Flare Management Guide • Does your pain change through- other strategies and self-help tips that offers hour by hour rescue plans that out the day? can help moderate your pain. If, for can help you nip a flare in the bud • Is your pain worse today than it example, you struggle with muscle before it gets out of control. was a week ago, a month ago or a tension, then consider stretching, Are you struggling to talk with your year ago? doing physical therapy, taking hot doctor? baths to relax muscles, avoiding Do you have your medical files? The worst thing that you can do is things which can worsen muscle Bring your medical history with walk into a doctors office and start tension, using guided relaxation you. Organize it thoroughly by date, crying. You need to be calm, col- techniques and, if necessary, using preferably in a binder, including the lected, informed and ready to be muscle relaxants. test dates, results, treatments and so your own best advocate. Your job is If you struggle with bladder wall forth. Also include your voiding and to give your doctors a road map for pain, then following the diet is an pain diaries. Show your doctor that your body and your pain. The source absolute must.2 If you are continuing you are a responsible participant in of your pain is the mystery you and to drink coffees and sodas which you your health care. If you don’t have your doctor are trying to solve. know irritate your bladder, then you one, you can download a medical Before you visit the doctor, ask your- are also to blame. Your job is to records kit here: https://www.ic- self the following questions: create an environment which will network.com/downloads/icnmedical- support healing of your bladder and • Where is your pain? Be specific. recordsfile.pdf calming of the nerves that are gener- Is it internal (inside of your body) or Talk FIRST about your functionality. ating that pain. external (outside of your body your An addict uses pain medication to Patients with central sensitization, skin)? Is it low by your legs or high escape life. A pain patient uses pain myself included, must work hard to by your belly button? Is it on the medication so that they can function, avoid overstimulating nerves. We do front of your body (abdomen) or on work and be responsible. This is the better in a quieter, less stressful envi- the back of your body? Tell them image you always need to ronment. We must avoid foods like exactly where it is. Is it by your present. Talk first with your doctor caffeine or chocolate which are neu- rectum? Your urethra? Your vulva? about your functionality. Are you rostimulatory. We often have to Your testicles? If you don’t know unable to work? to drive? to shop? to remove chemicals from our homes where these are, a simple google go church? Tell the doctor that your that can irritate our more sensitive search will give you plenty of dia- goal is to be able to function. Ask nerves. We also have to address any grams so that you can learn where what suggestions she or he may have anxiety or depression that is happen- these important structures are. You to help you restore your ability to ing. Remember that stress can should know where your urethra is function. This allows your doctor to increase the pain response so we before you visit the doctor and if you bring up and discuss a variety of want to be very proactive with stress don’t, you’ll look foolish. (You’d be treatments, including pain care. and anxiety. amazed by the number of people

THE IC OPTIMIST • Fall 17 • 13 Do you know the different types of potentially show estrogen atrophy. If Struggling to pay for treatments? pain medication? your vulva or vagina is dry, then so is If you aren’t covered by insurance There are many different types of your urethra and bladder. Estrogen or can’t afford treatment, you are cer- pain medication, from OTC products atrophy is a normal part of aging that tainly not alone. Participating in a to opioid medications and beyond. can be treated. clinical trial is one way that you can But even opioid medications have meet with world class physicians. Does your doctor and/or pain clinic differences. Some opiates are very Diagnostic procedures and treat- not know about IC? short term, lasting up to 4 hours (i.e. ments are usually free and some If you’re encountering doctors Vicodin) while others are time release trials may pay you for participation. who don’t know or understand what and are meant to last longer. (i.e. Look for trials at: http://www.clinical- IC is, bring a copy of the AUA Oxycontin). Some opiates are weak trials.gov Guidelines for IC/BPS. It’s about 50 (i.e. Tramadol), while others are very, If medications have become to pages long but includes several very strong (i.e. Fentanyl). Take costly you have two options. Look detailed discussions about pain treat- some time to learn about the differ- first for a compassionate use or drug ment and supports the use of opioid ent types of medications that are assistance program offered by the (and other) pain medication if neces- available. If your doctor is unwilling pharmaceutical company that makes sary. It’s better for them to have an to provide one type, perhaps you can your medication. If you meet their official document from the medical suggest another. Learn more here - income requirements, you could get association rather than a website https://www.ic-network.com/intersti- your medication for free or at a print out. You can down load it here: tial-cystitis-resources/pain-resource- reduced dose. Our website has a http://www.auanet.org/guidelines/inte center/#principles drug assistance resource center rstitial-cystitis/bladder-pain-syn- where you can learn more about this. Are you afraid of being examined? drome-(2011-amended-2014) https://www.ic-network.com/drugas- You might be surprised at how Are you struggling to find a doctor sistance/ often patients say they are afraid of or physical therapist? If you do not meet their income the examination. Some patients are The following websites have requirements and/or simply can’t very uncomfortable with intimate searchable databases: afford the medication, there are a examinations that involve looking at Interstitial Cystitis Network - variety of OTC supplements that your private parts and/or touching www.ic-network.com might be helpful: CystoProtek, Cysto the vagina or rectum. Don’t be afraid International Pelvic Pain Society - Renew, Desert Harvest Aloe, Cysta Q of this exam. It is very, VERY impor- www.pelvicpain.org and Prelief. Each cost under $50 a tant because this is how your doctor American Urology Association - month and some have clinical trials can determine where your pain could www.urologyhealth.org showing success at reducing the be coming from. It is essential that American Urogynecology symptoms of IC. You can easily they perform a quick vaginal and/or Association - www.voicesforpdf.org stretch these out by reducing dosages rectal exam. For women, the doctor Herman Wallace Institute - to make one bottle last up to three or should also look more closely at the www.hermanwallcecom four months. quality and health of your skin and Are you afraid to try physical therapy because it hurts? We often encounter patients who go to the physical therapist once and then give up because that visit was painful. Muscle tension requires muscle work. And, of course, when they are trying to find the dysfunc- tional muscles, they have to gently touch and push on muscles to see what hurts. In that first visit, pain is actually success because it means that they’ve identified the source of the pain. This is great news! Followup visits are generally much less painful because the physical therapist now knows where your pain is. During PT, their goal is to gently stretch and work muscles to restore their function. If it hurts, speak out! Tell them to back off a little bit. Be vocal. Rest assured that

14 • THE IC OPTIMIST • Fall 17 the vast majority of patients who try patients may be intolerant to lido- tial-cystitis-diet/why-some-foods-hurt-the- PT respond well to it, myself caine but may tolerate marcaine.) bladder/ included. If a treatment hurt you in the past, 3. Srivastava A.18 Benefits of Deep tell your doctor about your experi- Breathing and How To Breathe Deeply. One Are you afraid to be catheterized? Powerful Word. 10/18/2010 - ence. Ask if they can do anything Some patients fear catheters http://www.onepowerfulword.com/2010/10/ that will make it less painful or and/or other instruments that are stressful. Ask if there is another treat- inserted through the urethra and into ment you can do instead? the bladder because they cause pain. Generally this can be caused by very Are you managing your stress and tight muscles around the urethra, a anxiety? narrow urethra (aka urethral stric- Whether you want to admit it or ture) or a very dry urethra. Some not, stress is a well known trigger for patients may need to work first on IC flares and can exacerbate and their muscles with some physical intensify our pain experience. It’s therapy and/or using muscle relax- very important that we keep stress ants. Patients with a dry urethra due levels as low as possible. If you to estrogen atrophy may need to use struggle with high stress, you must some estrogen cream over time to learn some new and better skills to help produce some protective keep that stress from worsening your mucous. In both cases, plenty of IC. You may find taking a class in lubrication can help a catheter slide stress or cognitive behavioral therapy easily in and out. You can also may be helpful. Talking with a thera- request smaller catheters (i.e. pedi- pist, counselor or religious advisor atric French size 8 or 10) and/or low may be helpful. Creating a peaceful friction catheters. space in your home and simplifying expectations for yourself are very Have treatments hurt you in the important to those recovering from past? chronic illness and managing pain. Are you afraid to try bladder treat- ments (for IC Subtype 2) because Are you practicing deep breathing they have hurt in the past? Well, yet? again, you are certainly not alone. One of the easiest ways to reduce Older patients who were diagnosed stress and improve your overall with IC a decade or longer were health is to practice deep breathing, often exposed to old, outdated treat- especially when struggling with pain ments that WERE quite painful. and/or stress. Deep breathing helps Silver nitrate and chlorpactin are your muscles and pelvic floor to notorious for causing severe pain and relax. It delivers oxygen deeply into are no longer used for the treatment your body, improving muscle health, for IC. They are not even mentioned function and physical stamina. It in the AUA IC Treatment Guidelines. helps the release of toxins and emo- Even DMSO, the only FDA approved tional distress. Deep breathing can bladder instillation for IC, can be reduce your blood pressure and painful when used at the full dosage. make your heart stronger. It can Rather, DMSO is usually used in a boost your energy levels and mood. cocktail form with other medications Most importantly, deep breathing to help reduce any irritation and triggers the release of endorphins trauma. which are your bodies natural pain The most popular bladder instilla- killers.3 tion today is a rescue instillation made of heparin (or Elmiron) and lidocaine. It’s called a rescue treat- References ment because the lidocaine (or mar- 1. Payne C. A New Approach To Urologic Chronic Pelvic Pain Syndromes: Applying caine) usually numbs the bladder Oncologic Principles To ‘Benign’ Conditions. wall, stopping the pain almost Current Bladder Dysfunct Rep. Topical instantly. The heparin or Elmiron Collection on Pelvic Pain. March 2015 acts as a bladder coating. Some 2. Osborne J. Diet Modification Can physicians add a steroid or an antibi- Reduce Bladder Symptoms and Pain. otic to the mix. Some patients can do Interstitial Cystitis Network. January 22, these instillations at home. (Some 2016 - https://www.ic-network.com/intersti- THE IC OPTIMIST • Fall 17 • 15 What Patients Are Saying About CDC Guidelines As a man I am less able to get from writing scripts for opioid/nar- much pain that I would be biting the compassionate care for my IC due to cotic pain meds. The pain clinic that inside of my lips that I wouldn’t outdated notions IC is a woman'’ dumped me is the only one in my scream). I can actually enjoy events. I disease. county that accepts my insurance can go to concerts. I can travel. I ••• type AND writes for pain meds. I went back to full-time work. I fin- I am no longer willing to be a par- was never late, never cancelled an ished graduate school. I’m doing ticipant in the medical system as it appointment, and followed all of more graduate school now. I sleep 8 has failed me. their rules to the letter! hours at night. My relationships have ••• improved. Oxycodone has given me I have been on pain medication Functionality my life back. However, there's this for the past 2 years. I honestly don’t While on the correct dosage of dark cloud looming over my head. I know how I wouldv’e gotten through pain medication, I could lead a pro- know that at any time, my PCP can daily life without it. People don’t ductive, somewhat normal life. decide to stop prescribing on a understand that your body is used to People couldn’t even tell I had a whim. They are constantly new sur- taking it, and you don’t get “high” chronic pain illness bc of my high veillance of prescribers and my from it. It simply lessens the pain. I functionality. Without it, there is no doctor is scared. Most of the doctors have suffered with IC my entire life, hope of leading a normal life, as in the practice “won’t touch the but it has gotten worse since I have daily activities and work hours are stuff.” Even if my doctor decides to gotten older. I didn’t know I was able near impossible to withstand. move or change practices, I don't to have a decent quality of life. I ••• know what I will do. I am scared of work fulltime and just graduated Narcotics are so tricky. I had this losing my actual medication, whether college. I wouldn’t have been able to condition for years and tried every- it be losing my purse, misplacing it, make it through my classes without thing under the sun. Every western having someone steal it, etc. There is pain medicine. I think that pain medicine and eastern medicine such a public war going on with nar- medication should be monitored for option. Yoga, acupuncture, PT. Every cotics. At family gatherings my addiction and misuse, but I think it’s medication. I have a full box of med- family members talk about how terri- time to stop looking at all IC patients ications in my closet (meds that I ble narcotics are, and how awful like they are drug addicts. I didn’t tried, didn’t work). I went through addicts are. They talk about how ask for this illness. I couldn’t invasive procedures to try to get a chronic pain patients are no different prevent. It can’t be cured. I would diagnosis. I spent my life savings than addicts. Little do they know, much rather have a pain free life (about 5k) on PT that I couldn't that I am in this group they are without medication. Why would afford- insurance doesn’t cover it. talking about. At school they teach anyone want to be limited in every- Not one single thing brought an us that you can tell who is on nar- thing that they can do. Every single ounce of relief. After years of suffer- cotics by their pupils, this makes me thing I do in life is planned around ing, not sleeping for more than 2 scared to look anyone who is having a nearby bathroom, only hours at night, quitting my job due medical savvy in the eyes. At doctors being able to work certain jobs, and to the pain, my PCP suggested trying appts (outside of my PCP), I never doing everything to prevent a flare. I oxycodone. To say that it was life say that I’m on narcotics. Once I do, was honorably discharged from the changing is an understatement. It the environment of the appointment military because of IC. As someone brought pain relief without ANY side completely changes. The docs stop who has done all the diets, tried all effects. Not one. When I hear about a making eye contact with me and the medicines, participated in thera- pharmacy narcotics robbery so that dismiss me. When I don’t bring up pies, etc., sometimes pain medicine people can get “high,” I honestly the fact that I’m on narcotics, I am is necessary no matter what. wonder what that feels like. I’ve treated much different. Due to all of never felt any euphoria. The way I this and more, I’m exhausted. We Cut off with no notice or explanation describe it to people, is that after 30 need a change in mentality about Walking. Sleeping. Sex. IC affects minutes, the pain in my pelvis dis- narcotics, and also IC patients and these areas of my life and more. The solves away, kind of like a cloud narcotics. There has been a shift in pain clinic cut me off from the pain breaking up in the morning sun. I mental health perception-- medical med I was on for a couple years, got my life back. I could get out of professionals are pushing for this to with zero warning or explanation. my apartment. Go on walks. Actually be recognized as a DISEASE that My gp and urologist are bound by sit in a cafe and have a drink with needs TREATMENT, rather than a company policies that prevent them friends (before, I would be in so downfall of someones individual self.

16 • THE IC OPTIMIST • Fall 17 So why can’t we, as IC patients, be I do not feel like people who take that they particularly don’t care for perceived as patients who need opiate pain medication should be the medicines that IC patients mostly TREATMENT. There needs to be a punished for what other people do. take. They’re nowhere near strong shift in perception for pain manage- We are grown adults not children on enough and not the type of opiates ment of this condition. a playground. I also feel like drug they like. So that’s my two cents and ••• addicts often use that they were once I’m willing to do whatever is needed Having the use of opiate medica- on pain medication or got hurt as an to do to make sure that grown adults tion to control my severe IC and excuse and that’s written down and ...who can manage their own life and pelvic floor dysfunction has changed noted as the truth. I’ve asked a lot of their own medications... are allowed my life in a extreme positive manner. people... trying to gain my own per- to do so. I initially never ever left the house spective because I just could not ••• and was in the bed with heating pads imagine that anyone would take this The street fentanyl problem has ice packs all day, all the time. The medication willingly or would want increased awareness of the drug and sedentary lifestyle through my to for recreation. It confused me and I feel I am being judged negatively triglycerides to 230, the weight gain I could not understand that. And for needing it. It makes me anxious with severe the muscle mass loss was whenever I would just ask people and embarrassed on top of having to severe I was within heart attack range and have them ask their friends deal with IC -it gets to be too much, from the sedentary lifestyle. I now ...and so on... and pull in simple wish people would be more under- can function and attend my childrens surveys for myself ..they all said that standing about how I would not softball, cheerleading, baseball. For they lied to doctors that they started function without pain treatment. I years I could not attend at all. I can with a prescription. I asked him were am a highly active and successful now manage my home in doing they able or did the doctor trace the person that would be disabled laundry and small tasks around the prescription back to see what dates without pain management. I felt like house. The quality of life, receiving they took a prescription opiate and we were making progress but this opiate medication, has increased 90 how much initially and they all said latest policy activity I feel has pushed to 100%. no. I think all of this has been a lie us backwards. ••• and a manipulation. The addicts said ••• I live in Tennessee, where they are having a big “crack down” on opiates. I am worried that people like me will no longer be allowed to get pain medication. I can barely func- tion with the amount of pain I have even with pain medicine. If I were to be completely cut off from it, I'm not sure I would be able to take it.

Can’t be an active wife, mother or QUALITY ALOE VERA PRODUCTS FOR IC/PBS employee I have two small children that need daily care. I have no help at Call 800-688-9977 for an info pack and home and peeing 30-60 times a day along with the pain makes me FREE sample of aloe vera capsules useless. Getting a good nights rest 100% natural relief with no side effects used to help but without pain med- ication I only sleep one to two hours before I need to pee. It is terrifying Read more about IC/PBS and our living like this. I have never felt so double-blind, placebo-controlled clinical trial hopeless in my life. at www.desertharvest.com ••• I’m afraid I’m going to lose my job Click the Interstitial Cystitis link of 33 years because of the amount of work I’m missing due to pain and no pain meds. ••• It has affected my life in every way. I cannot work, or participate in the lives of my 5 perfect children. I am suffering so badly, and I’m very depressed.

THE IC OPTIMIST • Fall 17 • 17 Feature Story When Bladder Treatments Don’t Work by Jill Heidi Osborne MA

If you had been diagnosed with IC/BPS forty years ago, odds are you would have been prescribed antibi- otics, given urethral dilations and/or referred to a psychiatrist under the mistaken assumption that IC was all in your heads. Twenty years ago, that same patient might have been given harsh bladder instillations (i.e. chlor- pactin, silver nitrate or DMSO) and/or Elmiron (approved in 1996). Ten years ago, they might have been given the IC diet, prescribed overac- tive bladder medications and perhaps given a trial of Interstim. But did they work? Did they really work? The answer, of course, is no, not for tinely finding profound inflammation urinary analgesics/pain relievers (i.e everyone. Even Elmiron & DMSO, in the bladder wall. While these Azo Urinary Pain Relief tablets, the only FDA approved treatments patients struggle with the most Pyridium, etc.), bladder coatings and for IC, have conflicting research intense symptoms, the AUA sug- instillations. Botox and/or neuro- studies and success rates. Why do gested treatments (cauterization, modulation may be helpful in more some patients not respond to treat- laser or steroid injection) can cause severe patients. This is the subtype ments? remarkable improvement in pain, that responds best to traditional The answer can be found in sub- frequency and urgency. The new bladder therapies. If simpler medica- typing proposals now being debated medical device LiRIS is also showing tions aren’t working, it may be time and discussed by a variety of urology success at reducing the quantity and to explore more aggressive treat- clinicians and researchers. The size of lesions, in some cases resolv- ments in Step Four & Five. UPOINT/INPUT1 subtyping system ing them completely.3 Traditional and Dr. Christopher Payne’s five sub- bladder treatments (i.e. Elmiron, Myofascial Phenotype types2 help us to understand the DMSO) are not considered effective The Myofascial Phenotype nuance and clear variations found however diet modification is essential. includes those patients whose symp- throughout the IC patient popula- toms are the result of tight, injured tion. Subtyping focuses first on Bladder Phenotype and/or dysfunctional pelvic floor finding the specific pain generators The Bladder Phenotype includes muscles and/or fascia. This can occur (lesions, bladder, muscle, nerves, those patients who struggle with a after pelvic floor trauma, such as etc.) in patients so that the most bladder wall dysfunction/trauma, childbirth, pelvic injury, accidents, a effective treatments can be tried for such as that caused by chemother- history of repeated falls (i.e. ice their most unique case. If a patient is apy, chemical exposure, excessive skating, gymnastics, football). These not getting better, revisiting the diag- irritation from drinking coffees and patients may also have other ortho- nosis and subtype is essential. other irritants. The classic symptom pedic issues. The goal of therapy is is pain or discomfort as the bladder to relax contracted, tight muscles Hunner’s Lesions fills with urine that is relieved by uri- and restore normal function and The first clear subtype of IC/BPS is nation. Assuming that a UTI has blood flow. Suggested treatments Hunner’s lesions. Lesions are now been ruled out, treatments will focus include stretching, yoga, myofascial considered a separate and distinct on calming and soothing the bladder physical therapy, muscle relaxants, disease process with biopsies rou- wall with diet modification therapies, pain management, trigger point work

18 • THE IC OPTIMIST • Fall 17 and perhaps botox injection into tant. If these aren’t successful, then We can no longer blur the lines in muscle. Patients with PFD respond nerve stimulation and/or surgical patient recruitment for research extremely well to pelvic floor physi- release of the entrapment may be studies. Clinical trials must sort cal therapy, muscle relaxation, necessary. patients more effectively based upon perhaps trigger point or botox injec- their subtype to ensure that new tions into the muscles. Bladder treat- Central Sensitization/Systemic therapies are matched with the ments might provide minor comfort Pain Phenotype correct patient group. but will not get to the root of the The Central Sensitization/ Similarly, urologists, urogynecolo- problem. Systemic Pain Phenotype includes gists and primary care providers patients who struggle with other pain must step away from the “IC is a Pudendal Neuropathy Phenotype conditions such as IBS, fibromyalgia, bladder disease” and “bladder treat- Patients within the Pudendal vulvodynia, headache and/or aller- ments work for everyone” model. Neuropathy Phenotype struggle gies. Anxiety, depression and cata- They must first identify the drivers of with nerve dysfunction and/or strophizing are common. These pain before suggesting treatments. entrapment. What makes these patients have signs of systemic (body Subtyping does this. patients unique is that their symp- wide) nerve sensitization, including Lastly, patients must also under- toms are neurological in nature, sensitive skin, drug sensitivity, food stand that muscles and nerves can including sharp, electrical type pain sensitivity, an extremely sensitive also trigger urinary frequency, in the pelvis and/or urinary tract sense of smell, chemical sensitivity urgency, pressure and/or pain. If when sitting down. Some of these and, of course, a sensitive bladder you’ve been clinging to “my bladder patients may struggle with PGAD, a and bowel. They may also suffer with hurts” whenever you flare and are painful arousal sensation due to com- anxiety and depression. Treatment is using antibiotics or bladder wall pression or dysfunction of the focused on treating central sensitiza- treatments yet have not improved pudendal nerve. Others may have tion, calming the nervous system and substantially, then it’s time to look been born with a birth defect that addressing and to help reduce/ beyond the bladder. rerouted a nerve next to a bony control any psychological symptoms. structure that causes it to be com- Would a bladder treatment address a References pressed when sitting. Therapy is systemic condition? No. Because 1. Crane A, et al. Improving The Utility of focused not only on calming nerves these patients also struggle with Clinical Phenotyping in IC/PBS: From UPOINT but finding the source of the nerve bladder sensitivity, then the bladder to INPUT. JUROL April 2017 Volume 197, dysfunction through nerve blocks phenotype self-help recommenda- Issue 4, Supplement, Pages e386–e387 and, if possible, relief of any entrap- tions (i.e. diet modification) & 2. Payne CK. BPS/IC 2017: The Emperor ments found. These patients are treatments are also important. Has No Clothes. 2017 AUA Annual Meeting instructed to stop behaviors which Presentation. May 2017. Boston CA - In December 2017, the FDA’s 3. Peters K, et al. Safety, Tolerability and result in pain, such as sitting for long Bone, Reproductive and Urologic Preliminary Efficacy of LiRIS 400mg in periods of time. They may do yoga Drugs Advisory Committee is Women With Ulcerative IC. AUA 2016 and or physical therapy to help relax holding a meeting where they will be Abstract MP72-616 tight muscles. Medications to calm discussing the revision of criteria nerves and control pain are impor- used in interstitial cystitis studies. Consumer Alert - Warnings About Cipro Be Cautious with Cipro and Other ropathy (pins and needles in arms tions “because the risk outweigh the Fluoroquinolone Antibiotics and legs), anxiety, depression, hallu- benefits in these patients.” Patients Now that flu and cold season is cinations, suicidal thoughts, confu- should contact their doctors immedi- fast upon us, many patients have sion, skin rash, sunburn, abnormal, ately if they experience any serious been sharing that they are again rapid or strong heartbeat and severe side effects. The FDA suggests that taking Cipro, a once popular fluoro- diarrhea. Side effects can occur treatment be stopped immediately quinolone antibiotic. Cipro is also hours or weeks after taking the med- and the patient switched to another often used for urinary tract infec- ication and can last any average of class of antibiotic if there are any tions. In 2016, the FDA issued an 14 months to as long as 9 years after serious side effects. urgent safety warning about this stopping the medication. Medications involved: class of antibiotics because of a high Healthcare professionals should Avelox (moxifloxacin), Cipro risk of permanent side effects, not prescribe Cipro and other sys- (ciprofloxacin), Factive including: tendonitis, tendon temic fluoroquinolones to patients (gemicfloxacin), Levaquin (lev- rupture, muscle weakness and pain, who have other treatment options ofloxacin), ofloxacin. joint pain and swelling, worsening of for bacterial sinusitis, bronchitis and Source: FDA.gov myasthenia gravis, peripheral neu- uncomplicated urinary tract infec-

THE IC OPTIMIST • Fall 17 • 19 The Latest IC Research

Study Receives Funding to Study pudendal stimulation. The greater removal. In fact, 31% of these Urinary Fungal Biome in IC the stimulation, the greater the effect patients had stopped using opioid Patients on the brain. Makes you go hmmm. medication in the three months prior Researchers at Cedars-Sinai Source: Gill BC, et al. Real-Time to study completion. This confirms Medical Center received $350,000 in Changes in Brain Activity during that for a minority of patients, grant funding to study the microor- Sacral Neuromodulation for Overactive bladder removal can reduce pain. ganisms found in the urine of IC Bladder. J Urol. 2017 Dec;198(6):1379- However, more than 65% continued patients. Researchers in the NIH 1385. to need pain therapy after bladder funded MAPP Network had previ- removal suggesting that their pain ously discovered that IC patients Development of an IC Risk Score was coming from structures, nerves struggling with flares often had the for Bladder Permeability and/or muscles beyond the bladder. fungus, candida, in their urine as With hydrodistentions both There is no guarantee that having well as a significantly altered gut expensive and painful, researchers your bladder removed will eliminate microbiome. This study expands that have long sought to develop a non- your pain. A very careful diagnostic research by exploring the urinary invasive simple urine test which assessment of muscles and nerves, in bacterial and fungal flora in IC could identify patients with Hunner’s addition to the bladder, must be per- patients vs. controls. “We hypothesize lesions. Researchers at William formed before any considering of that perturbations in this community of Beaumont School of Medicine and surgical treatment. microorganisms may underlie or other- Beaumont Hospital have developed a Source: Koslov DS, et al. Impact of wise reflect IC/PBS symptoms.” If novel urine test which has reliably pathogens are found, they hope that Cystectomy with Urinary Diversion predicted the presence of lesions upon Tracked Receipt of Opioid this could lead to the development of with 89% validity. The study col- new therapies and disease prevention Prescriptions among Patients lected 448 urine samples from 46 strategies. They also hope to establish with Interstitial Cystitis/Bladder Pain states consisting of 153 IC patients of biomarkers based upon altered Syndrome. Urology. 2017 Nov 17. protein expression which could add which 54 had Hunner’s lesions. They in the development of new diagnos- then measured urinary cytokines, Cross Organ Sensitization tic methods. small proteins involved in inflamma- Between The Bowel & Bladder Source: Ackerman, L. The Urinary tion. ( Hunner’s lesions are distinct Why do IC patients often struggle Fungal Mycobiome and Host Responses from all other subtypes of IC due to with IBS and other bowel related dis- in Patients with Interstitial Cystitis. the presence of inflammation in orders? It turns out that the nervous PRMRP Discovery Award – Proposal: biopsied bladder tissues.) An aston- systems of the bowel and the bladder PR161914 - Award ishing success, the authors conclude share afferent nerves at the spinal Number: W81XWH-17-1-0433 “The Bladder Pemiability Defect Risk cord. Researchers in Australia Score is the first validated urine bio- reviewed the literature showing that Real-Time Changes in Brain marker assay for IC/BPS.” Very prom- “cross-organ sensitization” occurs Activity During Sacral ising indeed! Let’s see where this goes between the bowel and the bladder Neuromodulation for OAB next. and that “in such circumstances, colonic How does neuromodulation help Source: Lamb LE, et al. Development inflammation may result in profound frequency and urgency? Since its of an interstitial cystitis risk score for changes to the sensory pathways innerv- approval more than a decade ago, the bladder permeability. PLoS One. 2017 ing the bladder, resulting in severe operating assumption was that it was bladder dysfunction.” This suggests a local or regional effect… that Does Bladder Removal Reduce The that a bowel trauma, illness, event nerves in the lower back and pelvis Need For Opioid Prescriptions? could set the stage or be a triggering were being retrained to function nor- This study tracked narcotic med- event for profound bladder dysfunc- mally. In a small study of 13 patients, ication use in 26 patients with the six of whom completed the study, tion. most severe bladder damage, “end Source: Grundy L, et al. Cross-organ researchers at the Cleveland Clinic stage” IC/BPS, who underwent determined that an effect also sensitisation between the colon and bladder removal at Wake Forest occurred in the brain. Using mag- bladder: To pee, or not to pee? Am J netic resonance imaging, they found Baptist Health between 2010 and Physiol Gastrointest Liver Physiol. 2017 that sacral neuromodulation not only 2017. They found that SOME but Nov 16 influenced brain activity but that the not all patients required less opiate effect varied with the intensity of the pain medication after bladder

20 • THE IC OPTIMIST • Fall 17 Stem Cells Alleviated Do IC Patients Have a Lot of Mast Kenalog Injection Into Hunner’s Inflammation And Inhibited Cell Cells in Their Bladder? Lesions Death in IC Researchers in Japan studied Researchers at Drexel University Researchers in China investigated biopsy samples from 31 patients with Collect of Medicine (Philadelphia) the effect of human umbilical cord- Hunner’s lesions, 38 patients without evaluated kenalog injection as a treat- derived mesenchymal stem cells lesions, 19 patients with chronic cys- ment for Hunner’s lesions in 100 (UC-MSC) when injected into rats titis and 18 with a normal bladder to patients who were treated over a 2.5 who had their bladders damaged by determine if mast cell levels distin- year period. They had a 1.1 decrease cyclophosphamide. After one week guished IC from other conditions. in pain at 12 weeks after treatment. of therapy with UC-MSC, bladder They found no significant differences Frequency decreased from 11.7 to voiding improved, immunohisto- in mast cell density among the four 9.1 daily episodes. Nighttime voids chemical analyses showed that the groups they studied and concluded decreased from 3 to 1.6. They con- bladder cells were able to grow and that “mast cell count is of no value in clude “The use of a corticosteroid may repair damage, mast cells were the differential diagnosis of IC and other be beneficial to symptom control and reduced and inflammation improved. etiologies.” improvement in the quality of life Stem cell therapy using fat derived Source: Akiyama Y, et al. Digital of interstitial cystitis/painful bladder stem cells has been studied in the quantitative analysis of mast cell infil- syndrome patients.” USA with IC patients and the results tration in interstitial cystitis. Neurourol Source: Rittenberg L, et al. Kenalog were not long-term. It will be inter- Urodyn. 2017 Oct 24. Injection into Hunner's Lesions as a esting to see where the Chinese take Treatment for Interstitial this line of research. Delayed Onset Ketamine Cystitis Cystitis/Bladder Pain Syndrome. Curr Source: Xie J, et al. Umbilical cord- Case Study Urol. 2017 Aug;10(3):154-156. derived mesenchymal stem cells allevi- Ketamine is well known for its ated inflammation and inhibited apopto- ability to damage the bladder wall. sis in interstitial cystitis via AKT/mTOR Sadly, it has become a popular recre- signaling pathway. Biochem Biophys Res ational drug throughout the world. Commun. 2017 Nov 11. About ten years ago, doctors began It’s Time for a reporting on cases of ketamine cysti- Does The Urine of IC Patients tis with users showing often devastat- New Campaign Cause Cell Death? ing damage to the bladder and Researchers in Spain exposed kidneys. The damage and onset of Requesting More urine from IC patients on cell cul- symptoms was thought to occur tures and found a significant increase within weeks or months of use Public Toilets in cell death that intensified based which makes this study particularly upon the severity of an IC patient’s interesting. Doctors in Barcelona If you plan on travelling to symptoms. In contrast, patients with Spain share the story of a 26 year old Amsterdam in the future, take chronic pain did not show the same male who began struggling with note that there are only 3 public rates of cell death. The researchers urinary symptoms (pain with urina- toilets for women in the center of conclude that this could be used as a tion, frequency, urgency, inconti- Amsterdam as compared to 35 marker for IC and as a way of con- nence, nocturia, hematuria and pain) toilets for men. Out of despera- trasting IC patients from chronic at the age of 24. A urologist per- tion a woman had to urinate in pain patients. It was Susan Keay formed a cystoscopy which revealed public and was fined 90 euro’s. who, twenty years ago, discovered lesions on the bladder wall similar to The judge’s comments were offen- that the urine of some IC patients IC and common in ketamine users. sive. He said that she could have contained an anti-proliferative factor When asked, the man said that he used a male toilet by climbing on which appears to prevent cells from used 50mg of ketamine daily from top of a male urinal thus justify- multiplying. Could it be related in the age of 15 to 17. This is the first ing the far fewer restrooms avail- some way? This study doesn’t offer a case study to demonstrate symptoms able for women. He also sug- onset years after ketamine use was theory as to why this might be hap- gested that she should have uri- pening nor does it provide a clear stopped. The authors urge doctors to nated before going out. Would description of the subtypes used in intervene with ketamine users before you, as a woman travelling in a the study (i.e. Patients with Hunner’s significant damage occurs. lesions, etc.) but it is interesting. Source: Robles-Martinez M, et al. foreign country, be comfortable Source: Di Capusa-Sacato C, et al. Delayed Urinary Syptoms Induced by walking into a male restroom? Apoptotic effect as biomarker of disease, Ketamine. J Psychoactive Drugs. 2017 Wouldn’t you be worried that you severity and follow-up in interstitial cys- Sep 21:1-4. could be arrested? So much for titis. Actas Urol Esp. 2017 Nov 10. women’s rights. Appalling.

THE IC OPTIMIST • Fall 17 • 21 Case Study An Unusual Cause of IC & Pelvic Pain Symptoms A Urethral Diverticulum by Jennifer Gonzalez MSN, APN, ACNS-BC & Samuel Granpsas MD

(Editor’s Note: The patient referenced in this case study contacted the IC Network earlier this year to share that after years of suffering with IC, a new medical team focused on one of her more subtle symptoms – urethral pain. With a simple MRI, they discovered that she was actually suffering from a large urethral diverticulum that extended the length of her urethra. With surgical removal, she is now pain and symptom free for the first time in years. We are grateful that her care providers have written up her story to share with other patients. Her case proves that it’s not always the bladder or the muscles causing IC symptoms!) As anyone who treats chronic pain knows, it is nearly impossible to completely resolve a patient’s pain. For a provider, the complete resolu- run for a patient with chronic pelvic symptoms of pelvic floor tension tion of a patient’s pain is the ultimate pain. myalgia leading to pudendal neural- experience, similar to the adrenalin The differential diagnosis of ure- gia and PGAD. She required very rush following a game winning home thral pain is like any other. Often little of her local urologist save for run. Because of the complexities of times, most conditions become refilling prescriptions and a referral pelvic pain, it is a difficult condition obvious after a comprehensive to a local pelvic floor physical thera- to treat and rarely does the patient history and simple testing such as a pist. At the time of her initial presen- have full resolution of symptoms. urinalysis and culture. In this case tation, our practice was small and we Our patients are desperately hoping study, we look at a 53 year old did not have a specialist in disorders that the next provider they see will female who presented to us seeking a of the pelvic floor. Our interstitial be successful and knock the ball local urologist for the treatment of cystitis specialist was good, but had right out of the park. They want us her interstitial cystitis, pudendal neu- not experienced a patient with the to find an anatomic cause for their ralgia and persistent genital arousal significant pelvic floor abnormalities pain that can be treated with resolu- disorder (PGAD). Her symptoms had that were present in this patient. The tion of symptoms. This case study been managed out of state with patient was quite content with going discusses the recent grand slam we pudendal nerve blocks and botu- forward with local pelvic floor physi- hit in diagnosing and treating a ure- linum toxin to the pelvic floor cal therapy and traveling out of state thral diverticulum with complete res- muscles every 3-4 months. In discus- for nerve blocks and botulinum toxin. olution in symptoms. This is not just sion with the patient, she had Our advanced practice providers to showcase one patient but to already had significant work up (APP) do an excellent job at getting remind us that in many cases a including cystoscopy, physical to know our patients. During a visit pelvic MRI to diagnose urethral therapy evaluation and management, between botulinum toxin injections, diverticuli or other subclinical abnor- medication trials and treatment with the patient was talking to one of our malities can lead to the elusive home an out of state gynecologist for advanced practice providers and 22 • THE IC OPTIMIST • Fall 17 broke down telling her that her ure- fibroma, urethral varices, as well as stitial cystitis, pudendal neuralgia, thral pain never completely resolves other conditions (DeGrigorio, Lorge pelvic floor tension myalgia, and with injections. At this time, the APP & Dupont, 2016). Endoscopy is PGAD, this patient underwent a had completed training and was able seldom helpful because the openings simple MRI of her pelvis which to perform injections for the patient. are often very difficult to locate. In showed a large urethral diverticu- On prior exams, there was no ure- the past, retrograde and voiding ure- lum. The question now remains, was thral abnormality present but while throcystography but also retrograde this patient misdiagnosed for all of in clinic for injections, the APP urethrocystography with positive these years? It is important to con- noted a large, very tender urethral pressure tests (Riyach et al, 2014) sider all possible pathologies for a mass, but no purulence (pus)was have been used because this allows patient who presents with pelvic able to be expressed. The patient was the urologist to participate in the pain and remember that interstitial reluctant to have any testing done interpretation. Though these can be cystitis is the presence of symptoms because she would be hesitant to performed, the gold standard diag- in the absence of identifiable pathol- have any pelvic floor reconstructive nostic test when urethral diverticula ogy. In the past, misdiagnosis of ure- surgery and all prior testing was are suspected has become the pelvic thral diverticulum was common. Any costly and always negative for any MRI (Tanagho & McAninch, 2008). patient who presents with urethral abnormality. With encouragement Standard treatment consists of opera- pain and documented UTI should and persistence, an MRI of the pelvis tive excision and reconstruction. The undergo a pelvic MRI if previous was obtained and, to her surprise, surgical interventions currently in work up fails to provide a diagnosis. our expectations were realized and a use include transurethral marsupial- Only time will tell if our patient will large horseshoe urethral diverticulum ization, open marsupialization, exci- present again with irritative voiding (a pocket or pouch extending away sion with reconstruction, and endo- symptoms and pelvic pain. For the from the urethra) was discovered. scopic unroofing (DeGrigorio, Lorge time being, we can relish in the fact & Dupont, 2016). Surgical interven- that, at least for a while, we have Urethral diverticulum tion has complications of fistula, ure- successfully cured a chronic pain The incidence of urethral divertic- thral stenosis, urinary incontinence patient with complete elimination of ulum in the literature varies. Smith’s and lower urinary tract symptoms pelvic pain. This has been possible Urology reports the incidence to be reported between 3 and 10 % (Ryach by actively listening to our patient between 0.6 and 5% (2008). It rep- et al, 2014). and having the knowledge of pelvic resents about 1 % of the incontinent The surgical approach used for pain conditions. With this approach, patients in a urology practice. At risk our patient was an operative excision maybe there is a “homerun” waiting patients include those with traumatic and reconstruction. The patient did to be scored in your pelvic pain vaginal delivery, perineal injury, pre- not require a cystotomy (an incision patients. vious pelvic surgery and sexual into the bladder) and the surgeon, Patient provided written consent abuse. It is difficult to pinpoint as having performed many, reported to include case in publication. patients present with varying degrees that her excision was relatively easy. of irritating voiding symptoms, She had a catheter for ten days post References recurrent UTI or the patient may be operatively. There was concern that 1. Crescenze, I. & Goldman, H. (2015). completely asymptomatic. Any Female urethral diverticulum: current diag- the patient would struggle with nosis and management. Current Urology patient who presents with the classic spasms and pain related to the triad (dribbling, dyspareunia and Reports. 16: 1. Retrieved online October 3, catheter due to her reported history 2017 from https://link.springer.com/ dysuria) along with recurrent UTI of Interstitial Cystitis. The patient article/10.1007%2Fs11934-015-0540-8 should be worked up for a urethral did not report significant discomfort 2. Gregorio, M., Lorge, F., and Dupont, M. diverticulum. Muddying the waters associated with the catheter although (2016). Female urethral diverticulum: diag- for diagnosis are those patients with she did have a catheter associated nosis, treatment and outcome. Retrieved long standing urethral syndrome, online October 3, 2017 from https://www. urinary tract infection (s. aureus) omicsonline.org/open-access/female-ure- interstitial cystitis and pelvic floor that was treated with macrodantin tension myalgia as these patients thral-diverticulum-diagnosis-treatment-and- for ten days. At the patient’s one outcome-2161-0932- have these complaints continuously. month follow up from surgery, her 1000374.php?aid=72315 Diagnosis consists of a thorough urethral pain had completely 3. Riyach, O., Ahsaini, M., Fadl Tazi, M. history, complete exam and imaging resolved. At the time of this writing, Mellas, S., Stuurman-Wieringa, R., Khallouk, studies. In 80% of patients a palpa- she has no symptoms of painful A., Jamal El Fassi, M., and Hassan Farih, M. ble urethral mass is present, (2014). Female urethral diverticulum: cases bladder syndrome, pudendal neural- report and literature. Anals of Surgical however, this does not automatically gia, PGAD or urethritis and had indicate a urethral diverticulum. Innovation and Research. 8:1 Retrieved weaned off of the tramadol she was online October 3, 2017 from Differential diagnosis of urethral taking for years. Currently, the plan https://www.ncbi.nlm.nih.gov/pmc/articles/P mass includes ectopic ureterocele, is to wean the patient off of her MC3930819/ urethral carcinoma, vaginal wall chronic gabapentin as well. 4. Tanagho, E. & McAninch (2008) inclusion cyst, Gartner’s duct cyst, After years of treatment for inter- Smith’s General Urology. 17th ed. McGraw Skene’s gland abcess, periurthral Hill: New York THE IC OPTIMIST • Fall 17 • 23 Self-Help Tip How To Stop a Diet Induced Flare by Jill Heidi Osborne MA

You couldn’t resist. You had been Bladder Wall Flare Rescue 24 Hours or Longer (All of the above so good. You avoided the cranberry Strategies plus) sauce. Said no to the wine. You ate First Hour • Rescue instillations – If the flare really well until dessert arrived. • Stop & Rest – Don’t push has persisted, you can call your Grandma’s irresistible chocolate cake through the pain doctor and ask for a rescue instilla- started calling your name and • Use a heating pad or take a hot tion (aka – HepLidoA, heparin & wouldn’t let go. Wanting to show her bath or shower to relax muscles lidocaine) to numb the bladder wall. that you appreciated her cake • Drink a glass or two of water to Rescue instillations can be done at (right?), you indulged and enjoyed dilute your urine. Your urine should home if trained by your medical care every bite. Hours later your bladder be a pale, clear yellow. If it’s dark providers. Some patients may use starts to scream. If you’re like most yellow or brown, it is concentrated these daily until the symptoms calm patients who are diet sensitive due to and more irritating. If it’s clear, while others may go to their urolo- Hunner’s lesions or a sensitive you’re drinking too much water. gist once a week for several weeks. bladder wall, the holidays present • Traditional treatments: with many opportunities to eat foods • Drink a soothing herbal tea, like chamomile or peppermint tea. Antihistamines (Vistaril, Atarax), Low which later come back to haunt you Dose Antidepressant (Elavil), Bladder with a wicked IC flare. If you’ve 2 to 4 Hours – Get Serious About coating (Elmiron) imbibed in a cocktail, enjoyed some Symptoms (All of the above plus) cranberry sauce or fell for that slice • If you’ve eaten something acidic, How long does a bladder wall of decadent chocolate cake, here are reduce your urine acid levels by flare last? some strategies that you can use to using Prelief or Tums. You could also Bladder wall flares can be fairly nip this flare in the bud. try 1/4 teaspoon of baking soda in a short term. If the bladder is in good Bladder wall pain can be very glass of water. shape (i.e. IC symptoms are very sharp and shrill with some patients • Try a bladder analgesic to numb mild), a cup of coffee (decaf please) describing it as ground glass or razor the bladder wall (i.e Azo Bladder might cause a few hours of increased blades in your bladder. Bladder wall Pain Relief Tablets). These are avail- symptoms, perhaps accompanied by flares may trigger intense frequency able at most drug store and super- an uncomfortable, sleepless night but and urgency. A severe bladder wall markets. the symptoms should resolve fairly flare can cause a false sense of full- • OTC oral pain medications can quickly. On the other hand, patients ness, as if your bladder is very full help reduce mild to moderate pain who continue to drink coffee every with urine even when it’s fairly such as ibuprofen (Advil) or aceta- day trigger cumulative irritation in empty. It’s important that you not try minophen (Tylenol). Do not take the bladder that can extend bladder to strain to empty your bladder or symptoms indefinitely. get those last few drops out. Relax more than the recommended and let urination happen naturally. dosages. If used in large amounts, With luck and early action, you’ve ibuprofin can cause stomach irrita- successfully nipped this flare in the Bladder Wall Flare Rescue Goals tion while acetaminophen can irritate bud!! Don’t let IC diminish your hol- the liver. idays nor feel bad that you’ve eaten • Dilute urine to reduce irritants the wrong thing. We’ve all made that • Calm & sooth the bladder wall • OTC supplements may have a • Prevent muscle tension from calming effect - Desert Harvest Aloe, mistake and thankfully have some developing CystoProtek, Cysto Renew. flare management tips that work! • Fight pain early. 24 • THE IC OPTIMIST • Fall 17 ESSIC Meeting - Budapest Academy of Science Building Sept. 21-23 My Daughter’s Journey with IC by Gail Benshabat

(Editor’s Note: Gail Benshabat has a mission to educate medical care providers that young patients who are struggling with IC and pain deserve their compassion and respect. The Canadian health care system failed her daughter. Primary care providers are poorly educated about IC and pelvic pain. It can take months or years before patients see an IC expert. Treatment options are limited. Like most other countries, patients in pain struggle to find doctors who believe them. We paid Lisa - growing up you remind me of a present – every time for Gail to attend the ESSIC meeting in This lovely young girl you see in you open it up, it keeps getting better Prague to share her daughter Lisa’s front of you is a healthy and happy and better.” Everyone who knew Lisa story with providers from around the young twelve-year-old Lisa. She was saw her as a warm-hearted, non- world. Her speech is difficult to read but full of life and energy. She loved judgmental person, always giving so important to hear. With the newly pro- much of herself to others. posed subtyping systems under study, we school, her friends, music, being now have far more hope. Patients are around her sister and family. Lisa had Medical Maze one of those contagious smiles that now receiving treatments for their spe- When Lisa was only 12 years old, would light up a room. She had an cific presentation of IC and, as Dr. she came to me and said “Mom, it innate sense of positivity, often Christopher Payne said, cure is possible really hurts after I pee. Something’s not finding humour in so many things. for some subtypes. However, we do face right!” At first I thought it was a UTI This was a girl who had an affinity an uphill battle with respect to pain care or bladder infection. Little did towards animals, brimming with that requires our collective voices. Every anyone know that this would be the compassion and love. patient deserves hope that Lisa, tragi- beginning of something much more In time, Lisa had dreams of going cally, was never given.) complicated. In fact, this marked the to university, dating, working with beginning of Lisa’s journey with IC. animals or children, travelling, fur- Hello and welcome everyone. Lisa couldn’t articulate what she thering her love of guitar and art. What you are about to hear is an was going through. As Lisa’s mother, She thought about becoming a emotional account of a young her symptoms were worrisome. The teacher. This is a girl who wanted to woman named Lisa Benshabat – my merry-go-round of tests and doctors save the children in Africa by selling daughter and her journey with began with a simple blood test. Some Interstitial Cystitis. My goal is to put her art on T-shirts. She had strong bacteria were detected in her urine, a face to Interstitial Cystitis (BPS) so aspirations of making a difference in but antibiotics didn’t help. She con- that more people will understand the lives of those less fortunate. tinued to experience ongoing symp- how serious this chronic disorder Lisa loved working with children toms of pain and pressure. IC was an really is and how it touches so many and they loved her gentle “invisible thief.” Doctors were unable lives around the world. This presen- demeanour. In her late teens, she to find a thing wrong with her. Not a tation will reinforce how dire the decided to become an early child- thread of evidence. The pain contin- need is for emotional support for the hood educator. In her early 20s, she ued. The symptoms were persistent, individual, as well as for family volunteered at a local daycare, where but no-one could “see” what she was members. There is an urgent need to a co-worker later revealed the “feeling.” It raised the question: work together, to educate, research essence of who she really was as a “What could possibly be causing such a and find ways to help patients not person. Unabashedly, he said “Lisa, feel so isolated. drastic shift in her previously normal THE IC OPTIMIST • Fall 17 • 25 peeing habits?” we received a lot of help from said “I’m sorry, I can’t help you. You’ll A month passed until Lisa was support groups, the first being the IC just have to live with this.” She didn’t able to see a urologist who per- Network. They were our lifeline. hear one word of encouragement. formed a cysto with distension. Lisa thought IC was a rare disease, She didn’t hear what she needed to Following the procedure, the doctor however after going online, she dis- hear: “I believe your pain is real. I hear casually muttered, “She’s got BOR- covered that there are millions of you. You will get through this.” No one DERLINE INTERSTITIAL CYSTITIS.” people who have IC. She often gave her hope, outside of her family. What exactly did that mean? I had remarked how IC is not really treat- no clue. There was no discussion, no able and that symptoms could only “All in your head” explanation and no literature handed be managed. It bothered her that so By Lisa’s 26th birthday she had to me. Nothing! I had to do my own few people cared to understand it. I seen the inside of more than 10 spe- research. As it turned out, Lisa was started to think about that. How cialists’ offices across N.A. – and lucky. The medication she was pre- could a disease, more common than NOT ONE doctor could shed a bit of scribed seemed to have relieved we think, be so misunderstood? light on her ongoing physical pain. some of her discomfort. She went By this time she had seen numerous back to school. Was she really better? Friends and isolation specialists, neurologists, pain special- Unfortunately, not. During her ele- Lisa loved being with her friends ists, physiotherapists and an mentary and high school years, she and doing all the things that young acupuncturist. She was even told to hid her pain. The symptoms she people like to do together. But, when see a psychiatrist because by this experienced when she was 12 were she was in pain, she couldn’t make time doctors were alluding that her never really “gone.” It was like a plans. So few friends really under- symptoms were “all in her head.” But volcano ready to erupt. It was just a stood that part of her suffering. And Lisa knew better. “How could doctors question of when. She continued to when it happened constantly, friends think for one moment that my mind is have off and on bladder pain, spasms and family just assumed she making all of this up?” she would say. and urethral pain – but being a wouldn’t join them. So few friends By this time, she was reaching her trooper, she did her best to ignore understood how this condition can breaking point. A young woman the symptoms. cause depression, anxiety and sleep with dreams and aspirations of liter- By the age of 19, Lisa experienced deprivation. From high school years ally wanting to save the world, and a severe bladder infection. She right through to her 27th birthday, no-one could save her. No-one knew described her symptoms like this: “It Lisa fought her pain in silence, enough about IC. After countless feels like I’m peeing razor blades. I con- opening up to only a few close tests (echo-cardiographs, CATScan, stantly feel the need to pee. It hurts friends. She had urethral spasms, fre- uro-dynamics, ultra-sound, etc.) – when my bladder fills and it hurts when quency and intermittent pain in her everything came back normal. Even my bladder empties.” The pain became bladder. There were days, sometimes the second cysto came back normal! so severe, she could hardly get up to weeks when she was okay and then What happened to “borderline I.C?” go to the washroom. It hit her with a there were days when she just By this time, Lisa was starting to give vengeance. Any movements – wanted to curl up in a ball and stay up hope of every getting her life back. walking, standing, sitting down, in bed all day. She badly wanted to Definitive diagnosis climbing stairs were all, in Lisa’s go out with her friends, meet new people and go out on a date. But she In 2014, Lisa was referred to a words “torture.” On a daily basis it doctor outside of Toronto – an IC felt like a bowling ball sitting at the saw that sense of “normal” slipping away. IC affected every aspect of her Specialist who performed a battery of base of her bladder – a constant tests. I can’t even begin to describe pressure feeling that wouldn’t go life – from wanting to work, study and socialize. It affected her physi- the feeling we both felt when we got away. There was little to no relief an appointment with an actual IC after voiding. After the infection was cally, mentally and emotionally - nothing remained untouched. specialist. Before all of this, it was cleared, she was never the same. It like finding a needle in a haystack. was one roller-coaster ride of pain What pain does to you Imagine, so few doctors knew any- ups and downs followed by more Pain….it’s a strange thing. It does thing about IC and yet so many doctor referrals that went on for the things that changes your thinking. It people were suffering, horribly. next 7 years. No one could give us quite literally rips you apart physi- Finally, after years of unrelenting any clear answers. cally, emotionally and psychologi- pain, Lisa received a definitive diag- During this time we resorted to cally. Pain is trauma to the body and nosis. Our hunch was right. It was becoming our own “scientists,” after a long long time, it wears you IC. A few treatment options were researching, turning to ‘Dr. Google,” down. That’s a fact. It isolates you. It presented, such as bladder instilla- documenting symptoms and reach- makes you feel helpless and useless. tions and Elmiron. Lisa decided to ing out to IC support groups, experi- You desperately want someone to say menting with different medications, try Elmiron first, as well as add “There is hope. There is a way to Amitriptyline for pain management. trying teas and special diets. We were manage this.” But that never hap- anxiously trying to put the pieces It was beginning to feel like a craps pened for Lisa. It doesn’t happen for shoot. Everything was trial and error. together on our own. All this time, a lot of people. Many of her doctors

26 • THE IC OPTIMIST • Fall 17 Wanting to feel normal could we have saved if the medical from cancer. Most people can’t com- On most appointments her pain professionals had asked the right prehend what it’s like to live in pain specialist would remark, (with full questions, intervened at the right because the outside doesn’t show optimism) “You look great Lisa!” time, pooled their knowledge with what the person is suffering inside. There’s no denying it – she always others and really listened to their Despite everything, I still have “looked good” but inside she was patients’ stories. hope. My daughter’s journey, that suffering. In reality she didn’t feel the Suicide - sometimes a last resort spanned 16 years opened my eyes to way other people feel. I can never some beautiful things. It has taught It’s not uncommon for women me something about pain through forget her words that were repeated (and men) with marginalized condi- over and over again – “Mom I just the lens of empathy. I don’t have pain tions like IC to feel hopeless, even but I can honestly tell people “I know want to feel normal….Please…doctors suicidal. Women with chronic pain have to know what I’m going through… what you’re going through and will fight attempt suicide 4 times more than with you AND I will fight for you. I will what other people must be going through..” the general population. Suicidal In the fall of 2015, Lisa was take you seriously.” I’m grateful for ideation is 3 to 4 times higher in IC what is being done by E.S.S.I.C. and willing to try anything. She was sufferers. No-one wants to opt for barely able to finish her studies in by those who are researching new suicide, but when the physical and ways to understand IC. I encourage Early Childhood Education. She suc- mental anguish become too unbear- ceeded in finishing everything except more people to take the path less able, for some people it becomes the travelled. If we ask the right questions, a field placement. There were days only way out. I hope this changes. when she felt okay and other days imagine what we can accomplish. not. Everything revolved around her Final thoughts... Special Thanks level of pain. As a mom, I needed to search for I want to thank the IC Network Some ups and downs different pathways to understand the and Jill Osborne (President and disease. Not just for Lisa but for the Grasping at straws, she focused Founder) who so graciously covered millions of people who are seeking my travel expense to the ESSIC more on her diet, switched to answers. Some of those answers another medication, and started fol- meeting here in beautiful Budapest. came from support groups from Her knowledge and expertise on IC lowing the AUA protocol for manag- around the world – people who have ing IC. The first line of defence: has given me the strength to keep done their research and took on IC going and advocate for others who Physiotherapy, pain management, as a life-long research project – diet and stress reduction techniques. are losing hope. reaching out to IC sufferers. IC, like Thank you to the Four Seasons The “real”game-changer was “diet.” many other marginalized diseases Her Naturopathic doctor put her on Hotel – Gresham Palace for providing gets a real kicker. Why? IC dispro- accommodation during the E.S.S.I.C. a more holistic path – focusing on portionately affects females. You see, known allergens and eliminating Meeting. I am so appreciative of their if you’re a female, you’re told that generosity. them from her diet. Believe it or not, you exaggerate your symptoms and if it made a significant difference in her Thank you Dr. Wyndaelle and Dr. you’re a male, you’re told to be Lovasz, as well as the ESSIC pain level. Things were actually strong and face up to it. This is one looking up! Committee members who allowed of the things that we need to change. me to be here today. It has truly been Losing Hope - 2016 There’s been a stark rise in autoim- an honor and a privilege to speak, By early 2016, Lisa knew that that mune disorders over the past 50 not only on behalf of my daughter this was going to be an uphill battle, years, from Type 1 diabetes and but for all IC patients. This has been no matter how she looked at it. After Multiple Sclerosis to asthma and an incredibly humbling experience, 16 years of going in a vicious circle, Celiac disease. Fortunately, we’re to be here and to carry on Lisa’s she had enough. She was tired and slowly starting to understand what legacy by bringing awareness to IC. I drained. On February 9, 2016, at affects our immune system: food, know, in my heart, she would be so 3:45 p.m. I came home and found environment and toxins are definite proud. Thank you. my daughter’s lifeless body. She had triggers. If we’re going combat these September is IC Awareness Month. taken her life. “Mom…“I want you to diseases, we have to work together. This is a time when IC patients and know that you did everything you could We have to collaborate and share advocates all around the world raise to help me and more....I couldn’t have information across all disciplines. awareness about interstitial cystitis. gotten this far in life without your As a mother, my first instinct is to But let’s not stop here. We can all endless love and support. At this point I protect my children. You see, I had make a difference if we do our part. I can tell you that I lost hope that I would to to be strong and convince my urge you to write about IC/IBS, share ever get better.” daughter that she she would get your information and stories and better, even though doctors weren’t IC Patients - Resilience spread the word to your social net- giving us a lot of hope. All too often I working community, your govern- I have to stop here a moment and would turn my eyes away from the tell you…Lisa and many others like ment representatives and media sobering facts: Approximately 50% of outlets so that we can all make a dif- her had who could not continue IC patients can’t hold a full-time job. along this path, had resilience. They ference in the lives of those living Many have a quality of life that with IC/IBS. fought and they fought hard. It resembles that of person suffering makes me think – how many lives THE IC OPTIMIST • Fall 17 • 27 How to Qualify for Disability Benefits with Interstitial Cystitis by Bryan Mac Murray, Disability Benefits Help

As of November 2002, the Social cants to have contributed credits to tains entries for all SSA-approved Security Administration (SSA) deter- Social Security, but it does require disabilities, as well as the evidence mined that critical cases of interstitial that their income is low enough to required for applicants to demon- cystitis may be a basis for finding demonstrate financial need. To strate their disorder’s severity. The disability, allowing those with severe qualify, applicants must make under reason that most diagnoses also diagnoses to finally receive the help a certain amount of money each require supporting evidence is for the they deserve. If you or a loved one is month. The current income limits for SSA to ensure you are “totally and unable to work or live their normal SSI applicants is $735 for a single permanently disabled”. This term lives because of their IC, then Social applicant or $1,103 for a couple. means that your disability is severe Security disability benefits may be an However, applicants with certain enough, and will last long enough, to option. Continue below to learn how kinds of unearned income may still keep you from working or function- to qualify. qualify for benefits while making ing normally. more than this. Because receiving benefits for Two Programs interstitial cystitis is still rather rare, It is important to understand what it currently does not have its own Social Security disability benefits are, SSDI (Social Security listing in the Blue Book. However, the different programs available, and this does not mean you are ineligible how you can meet their technical Disability Insurance) is for to qualify. Applicants can medically qualifications. Depending on your qualify with IC in two different ways: work history and current income, those with a past work • Qualifying under a separate you may qualify for one (or both) of listing. If your IC symptoms qualify two different Social Security pro- history. SSI (Supplemental you under another disorder’s Blue grams: SSDI and SSI. Security Income) is a Book listing, then you may be eligi- • SSDI (Social Security ble for benefits this way. For Disability Insurance) is for those program for those who instance, chronic and severe IC is with a past work history. Applicants known to be linked with high levels qualify for this program if they have are unemployed, do not of stress and depression. If this is the contributed enough “credits” (money have a work history, have case, your IC may qualify you under in taxes) to Social Security in their section 12.04 of the Blue Book which lifetime. More credits are required of low income, or who are handles severe mental health disor- people who are older, as they have ders. had more time to work and pay under 18. • Qualifying for a medical voca- taxes. For example, a 39-year-old tional allowance (MVA). These are needs 20 credits (or 5 full years of If you are unsure whether or not reserved for people whose disabilities qualifying work) to be eligible for you qualify for a program, you can are not listed in the Blue Book, but SSDI, while a 58-year-old needs 36 use the SSA’s online income calcula- who qualify as disabled enough to be credits (9 full years of work) instead. tor or speak with a representative at incapable of doing any work they are Those who receive SSDI qualify for your local Social Security office for qualified to do. For example, if a monthly financial benefits and help. (www.ssa.gov) person spent their life in trade school Medicare insurance. learning to be a mechanic, but is • SSI (Supplemental Security Medical Requirements unable to continue the only work Income) is a program for those who When the SSA evaluates disability they were trained for because of their are unemployed, do not have a work applications, they compare an appli- IC, then they may qualify for an history, have low income, or who are cant’s diagnosis to its matching entry MVA. under 18. It does not require appli- in the “Blue Book”. This book con- Regardless of how you qualify, it is 28 • THE IC OPTIMIST • Fall 17 impor tant to prov ide th e SSA with Wha t T o Do If Y ou ’ve Been De nied Reg ardless of what stage of the any and all documents demonstrat- appeals process you are in, you have Be nefits ing the severity of your IC. From the right to be represented by an If you’ve be en denied be nefi ts, medic al reco rds , test res ults, and ther e is an app eals f ram ework in attorn ey or disab ilit y advocate . If hospit ali zat ion histo ry to p ay s tubs plac e to ask fo r re cons idera tion o f you’ve b een denied , it m ight be a and co worker testim onies, it is you r case. Many applica tion s ba sed good idea to reach o ut to on e in your alw ays b est to p rov ide mo re inf orma- on inter stitial cys titis are de nied area to get a better idea as to how to tion t han less. be ca use So cial Secu rity ma y n ot appeal your case . attemp t to obtain a statement from a This article was written by the Applying for Ben efits trea ting phy sic ian at the initia l appli- Outreach Team at Disability Benefits Applicat ions fo r S SDI ca n b e catio n l evel . In ad dition , yo u may Help. They provide information started online whenever you are not have the chance to describe how about disability benefits and the ready. T he appli cation can be fo und your I C redu ce s y our abilit y to work. application process. To learn more, on the SSA’s m ain webs ite along wit h The nex t s tage o f the ap peals please visit their website at FAQs, pa per w ork che cklists , and p rocess is Recons idera ti on. At thi s http://www.disability-benefits- many other helpfu l re sources . stage, you can sub m it new evid ence help.org or by contacting them at

Applications for SSI are currently about your case, however it has the [email protected]. unavailable online and must be made same issue as the initial application – in person via an appointment at your you may n ot be ab le to m ake a case local Social Security office. However, based on th e evidence th at t he SSA you can choo se to b egin t h e process revi ews. onli ne b y fil ling out an Online If you file for t he n ext sta ge, a Ap plic ation for Disa bili ty Benef its. hearing bef ore an admin istra tive law This w ill hel p gaug e y our elig ibility judge, y ou may b e a ble t o m ak e an as well as gi ve yo u the opt ion to effective case with statements from a transfer the information to your in- physician, in addition to a vocational person application. expert.

www.prelief.com

THE IC OPTIMIST • Fall 17 • 29 Santa Rosa Fire Update ICN Back Open for Business by Jill Heidi Osborne MA

If you’ve been following the ICN social networking channels this Fall then you know that we were in the center of the Northern California fire storms in October. Evacuated, I had no choice but to close the ICN for several weeks. Cleanup has just begun as thousands of homes and businesses try to pick up the pieces and rebuild their lives. Here’s what Fountaingrove neighborhood where later. They were able to get out with happened. residents, many seniors, had no clue their pets and computers. On Sunday October 8th, we were that their lives were in danger. One This fire had no preferences. It in the middle of a week long “Red of our family friends, an elderly struck the rich and the poor. It Flag” warning for forest fires. The woman, ran for her life leaving her burned schools, hotels, medical weather had been hot for weeks, the pets and horse behind. They did not offices and assisted living centers. grass on the hillsides were brown, survive. The chairman of our local Simply put, it was a nightmare from bone dry and high inland winds (50 hospital and her husband ran in their which we are still recovering. to 80mph gusts) were anticipated. By pajamas down the street, unable to Thankfully, my home did not burn the time I went to bed around 10PM, get their car out of their garage. They but it came close. Our first evacua- the winds were whipping branches had no time to even grab wallets and tion lasted five days. We returned, against my bedroom window and purses. Several elderly residents died cleaned out the fridge, bought $200 there was a hint of smoke in the air. in their homes, their garages or their of food and at 4:30AM the next Transformers had been blown out cars because they could not move morning the police arrived with and power lines had gone down, quickly enough to get out. sirens and loudspeakers telling us to setting off several small but easily The fire then raced down the hill- run. A new fire was approaching controlled fires throughout the North sides into the city itself, where it from the east and we could see the Bay. licked the walls of two major hospi- flames. This time we had 15 minutes Ten miles north of us, near the tals, forcing their evacuation. It to get out. Terrifying? You better town of Calistoga, another fire began jumped a four lane freeway, burning believe it. that quickly expanded south. Moving several businesses before racing into Now weeks later, the fires are at an estimated football field every yet another large neighborhood, finally out but we are all struggling three seconds, it took just two hours Coffey Park, leveling thousands of with disaster fatigue. Everywhere we to move into the hills above my homes. One of my good friends was go, every single day, we see homes home and city (Santa Rosa), leaving on the phone with her daughter burned and family members picking carnage in its wake. By the time my when her daughter screamed that her through the wreckage looking for a 95 year old father woke me up at house was on fire. The line went few family treasures. At the store, the 1:30AM, the skies had turned red dead. It took Julie three terror filled doctor or the movies, everyone talks and the air was so thick with smoke hours before she was able to connect about what they’ve lost or what they that it smelled like gunpowder. Cars with her children again. They, too, experienced. Hundreds of notices for and trucks were fleeing southward fled with nothing but their pets and lost pets are stapled throughout the down from the hills. wallets. My friend Melissa, pregnant city. Men and women, myself That night more than 5,000 with her first child, welcomed two of included, cried freely for weeks. homes burned. It raced down a her friends who had evacuated from There’s not just a physical recovery to beautiful agricultural belt (Mark the Mark West area. They ALL had to be had, but also an emotional recov- West) burning farms, vineyards and flee her Coffey Park home an hour ery. I expect that it will take many ranches. It travelled up and over the

30 • THE IC OPTIMIST • Fall 17 months or years before that happens. • When the power goes out, credit were first announced through the I would like to thank everyone cards cannot be used. Disasters Nixle System. who reached out with offers of a safe create a cash and carry economy. • Have a portable radio available place to stay, as well as their support Always have some cash on hand in (aka the old transistor radios) so that and encouragement. Thank you also case of emergencies. We went you can listen to the local news for your patience. We had a TON of through about $1000 for gasoline, when your phones are down. messages on our phones but without food and supplies for four people. • Remember that seniors may not power, internet and cell service we • Fill up your car when it hits half hear sirens or own cell phones. They couldn’t access those messages and a tank. That first night, I had about also cannot move quickly. Please return those calls. 1/8th of a tank of gas in my car and check on them in your neighborhood. I would like to thank Heather with the power out, there were no • If you know of residents who Brown, our newest ICN Shop gas stations open. Worse, I couldn’t are disabled or in wheelchairs, please employee, who came to work to our drive around looking for gas help them evacuate and/or call 911 warehouse everyday and literally knowing that I might need to evacu- to get them out. kept the orders going out the door. ate 50 miles away. Thankfully, a • Don’t leave pets behind unless She, too, had to evacuate but still neighbor gave me a few gallons of you are forced to. Our evacuation came to work. AMAZING! gas. I’ll NEVER let that happen again. centers allowed animals to be Thanks to Janice and Brian • Keep your essential medications brought with them. Our local fair- Schmidt, my sister and brother in in one spot, preferably an easy to grounds took in lots of horses, cows, law, who offered us sanctuary and carry bag or box so that you can grab goats and so forth. If you have a lot took my frantic desperate phone calls them and run. of small household pets, make sure as we tried to decide what to do. • Check on your neighbors! Bang that you have the ability to move Angels all! on doors if you must. One young them quickly and easily, preferably man banged on 100 doors in the with crates. Cats can be evacuated in Here are some of my lessons learned Coffey Park neighborhood, a true pillow cases! about evacuating quickly - hero. • Keep in touch with your single • Always keep a few cases of water • Sign up for Nixle Alerts on your friends who are facing disaster alone. in your garage and/or car. We went cell phone so that you can receive They often feel alone, isolated and through several cases of water during warnings about disasters or emergen- scared. Bring them into your homes our evacuation. cies in your community. Evacuations if you can. Clinical Trial Announcements The Leadership 301 Trial Seeks Men bladder pain and improved symptoms extension period where all patients & Women In USA, Canada & Europe compared to those who took placebo. receive active study drug. There will be a final follow-up visit 6 months after It is estimated that approximately Eligibility the last dose of study drug. 4% (25 million) of the adult population You may qualify if you: in the US and in Europe* may experi- • Are male or female between the Study Locations ence Interstitial Cystitis/Bladder Pain ages of 18 and 80 years • USA - Alabama, Arizona, Syndrome (IC/BPS) symptoms. If you • Have been diagnosed with IC/BPS California, Connecticut, Georgia, or someone close to you has IC/BPS, for at least 3 months but less than 20 Indiana, Iowa, Louisiana, Maryland, you know how challenging it can be to years Massachusetts, Michigan, Nevada, New live with its symptoms of ongoing • Have consistently experienced Jersey, New Mexico, New York, North bladder pain, urinary frequency moderate to severe bladder pain, Carolina, Ohio, Oklahoma, (needing to go often), urgency (feeling urinary urgency, and/or urinary fre- Pennsylvania, South Carolina, a strong need to go), and/or pressure or quency Tennessee, Texas, Virginia, Washington, discomfort in the bladder/pelvic area. Wisconsin What Will Happen During the Study • Canada - British Columbia, Study Purpose As a study participant, you will have Ontario, Quebec The Leadership 301 Trial is evaluat- regular contact with the study team • Europe - Belgium, Czech ing an investigational drug (AQX-1125) who will monitor your health closely. to see if it will reduce bladder pain and Republic, Denmark, Hungary, Latvia, There will be 13-14 visits during the Netherlands, Poland, Romania, Spain, relieve other symptoms such as urinary study, which will last approximately 22 United Kingdom frequency. The investigational drug is a months. There will be a 12-week treat- new type of medication that may help ment period and a 52-week extension. Additional Information reduce inflammation in the bladder. In During the treatment period there will To learn more about the Leadership an earlier study in women with IC/BPS, be a 1 in 3 chance you will receive 301 Trial and to find a participating those who took the study drug every placebo. After completing the treatment study site close to you, visit day for six weeks experienced reduced period, you will be randomized into an http://www.leadership301.com

THE IC OPTIMIST • Fall 17 • 31 The IC Diet Project Simple and Savory Holiday Dishes by Bev Laumann

I don’t know about you, but this mornings, instead we opened pack- best memories. So as you are scurry- last week before the holidays is ages slowly…very slowly. I truly ing around trying to pull together usually a mixture of excitement, believe that one of the “benefits” of your last minute preparations, busy-ness, nostalgia, and fun…with not feeling 100% was that we remember to prioritize your efforts. a bit of anxiety thrown in for flavor. I savored the joy of each gift. In fact, Don’t be afraid to take a few short- usually want everything to be half-way through the day we all cuts to save your energy for what perfect: the perfect presents, the stopped and worked on a 3-D matters most – your most cherished perfect gatherings, and the perfect puzzle. To this day I can visualize traditions and your family and food, all to help create the perfect that puzzle on our coffee table; each friends. memories. person taking a turn putting in a But think about it. What do you piece until it was complete. Holiday Food Shortcuts remember about the holidays of your Since we had planned to eat at As much as we look forward to past? Is it the meticulously decorated someone else’s house that year and our holiday meals, the preparation tree? Is it a turkey roasted to the couldn’t, I threw together a frozen can be time consuming and stressful. perfect golden brown? Or is it the roast beef, potatoes, carrots, onions, Here are a few shortcuts that can people and the songs and the laugh- and celery and let the slow cooker help you still enjoy holiday favorites ter and the joy of just being with gradually fill the house with the deli- while conserving your precious those you love? ciousness of a wholesome, every day, energy for your family, friends, and One of MY favorite Christmas family meal. And yes, we stayed in yourself! memories was the year we all had our pajamas to eat. We liked this so 1. Plan meals where people can the flu in my house. How could that much that in the years to come we personalize their dishes. With be, you wonder? Well, it was the first deliberately stayed in our pajamas all enough variety, everyone can choose year my husband and I stayed home day and had roast beef as our meal. the foods they like and avoid their with our three young children (9, 6, What fascinates me most, personal food sensitivities. For and 4 years old) without running however, is when I look back at 35 example, set out platters of meat, around visiting. We stayed in our years of holidays as a wife and cheese, vegetables, and spreads with pajamas all day, and each person mother, it is that perfectly imperfect wraps and buns and let people make found a place to lounge curled up in Christmas that has the most vivid their own sandwiches. Bake large a blanket. We didn’t experience the memories. Imagine that. Things restaurant size potatoes and set up a chaos and squeals of other Christmas didn’t have to be perfect to create the topping bar with cheeses, vegetables, 32 • THE IC OPTIMIST • Fall 17 salsa, beans, and chopped meats (chicken and bacon are common choices). Ice cream sundae parties are also fun! Don’t forget to include holiday flavors like gingerbread cookies, crushed candy canes, and cookie sprinkles. 2. Purchase plain, cut sugar cookies: Order from a local bakery and decorate them at home. Take extras to nursing homes, the fire station, shelters, or neighbors. 3. Use frozen prepared pastry shells for your pies: Bladder and stomach friendly pies like custard, banana cream, coconut cream, apple, butterscotch, pumpkin, and sweet potato pies are easy to make! You can also use these frozen crusts for quiche or make meat pot pies out of left-overs. 4. Add a little holiday flash to everyday foods: Add some cookie sprinkles to pancake dough. Garnish plates with a slice of orange and a sprig of parsley. Crumble a simple streusel topping (brown sugar, par- tially softened butter, cinnamon, and flour) on blueberry muffins before you bake them. For a fun party mix, drizzle melted white chocolate over bagged caramel corn and roasted almonds that you have spread on cookie sheets – add some candy sprinkles before the chocolate hardens. Break apart and serve in pretty holiday pans or dishes. 5. Collect leftovers in one bowl/bag and put in your freezer. Small portions of leftover peas, carrots, corn, rice, and meat can be thrown in a slow cooker to make a house! Serve with fresh berries making Directions: great stew or soup. Christmas morning savory, simple, and Pierce bottom of pie shell and 6. Clean up as you cook. Keep a special! bake for 5 minutes at 350°F. Cool garbage can nearby and load and Ingredients: slightly. Raise temperature of oven to unload the dishwasher as you go. • 2 (10 oz.) pkg. frozen chopped 400°F. Drain spinach and press out Use antibacterial kitchen wipes to spinach (thawed) all liquid. (This can be done easily give your cooking surfaces a once • 5 eggs between layers of paper towels.) Set over when you are done. • 1 c. half and half (may substi- aside. tute 1 c. evaporated skim milk) Whisk eggs and half-and-half or Spinach and Feta Quiche • 1 c. crumbled feta cheese (4 oz.) milk in bowl. Add cheese, green onions, lemon zest, salt, and pepper. (From Confident Choices® A • 2 T. chopped green onions Pour into partially baked pie shell. Cookbook for IC and OAB) • 1/2 t. lemon zest, if tolerated Bake on middle rack, 400°F for 10 Looking for a quick but special • 1/2 t. salt minutes, reducing oven temperature holiday breakfast? Prepare this simple, • 1/4 t. pepper to 350°F for the last 25 minutes. savory quiche ahead. Pop in the oven • 1 unbaked, frozen deep-dish Broccoli and Cheddar Quiche: when you are opening packages and 9-inch pie shell (I like Marie Substitute 1 cup frozen broccoli soon the smells of breakfast will fill the Callender’s brand) florets for the spinach and 1/2 cup THE IC OPTIMIST • Fall 17 • 33 shredded white cheddar cheese for the feta cheese.

Slow Cooker Beef Stew Sometimes having an elaborate Turkey Dinner just isn’t possible. A simpler meal, such as Beef Stew, is easier to make, adds less stress to the day for the cook in the family and can provide a lovely family feast. Pair it with your favorite hot biscuits, corn- bread or rolls. Serve with a salad of your choice and enjoy! Ingredients: • 2 lbs. beef chuck • 1 t. paprika • 1 1/2 t. salt • 1/2 t. pepper • 1/3 cup all purpose flour • 3 T olive oil or shortening • 1 medium white onion (if toler- ated), sliced thinly • 1 clove garlic, chopped • 1/2 pound small mushrooms whole or cut in halves • 1 pound small white potatoes, cut into quarters • 1/2 package baby cut organic Butterscotch Pie salt, egg yolks and milk; slowly stir carrots (From Confident Choices® A this mixture into the hot syrup. Boil • 2-3 cups organic beef broth, low Cookbook for IC and OAB) everything until it thickens; then add salt (no msg please) If you love the caramel goodness of the vanilla. Pour mixture into a fresh thyme springs butterscotch, here’s a special holiday pie baked pie shell. Make meringue! recipe with a rich Southern flavor. Directions: Meringue Topping: Ingredients: Cut beef into bite size pieces. Toss • 2 egg whites • 2 T butter with paprika, salt and pepper and • 4 T sugar • 1 c. brown sugar flour, the shake off excess flour. Heat • 1/2 t. cream of tartar oil to medium high in your slow • 2/3 c. hot water cooker and brown meat. Cook until • 2 T flour Whip the whites in a clean dry browned on all sides. Add in sliced • 3 T cornstarch bowl on low speed until foamy. Add onions, chopped garlic, carrots, • 1/2 t. salt the cream of tartar and continue mushrooms and potatoes and con- • 2 egg yolks whipping on medium speed until tinue to saute for five minutes. Add • 2 c. milk soft peaks are formed. Gradually two to three cups of beef broth and • 1 t. vanilla pour in the sugar and continue fresh thyme. Simmer on low for 6-8 • 9-inch baked pie shell (can use whipping on higher speed until stiff hours or until meat and veggies are baked from frozen prepared shell) or and glossy. Pile the meringue onto tender. If you would prefer a gravy small pie shells the pie(s) and swirl to cover, making like sauce, remove 1/2 cup of sauce • Meringue sure to touches the crust on the edges. from the slow cooker. Stir (or whisk) Directions: Bake pie at 325° until the in 1/4 cup flour into the 1/2 cup Brown the butter in a heavy meringue is slightly browned sauce until no clumps remain. Stir saucepan over medium heat; add the (approx. 15 minutes). Watch care- back into the slow cooker and cook brown sugar and stir it until melted. fully so it doesn’t burn! Cool before for an additional five or ten minutes Add the hot water and cook, stirring serving! until the sauce thickens. syrup until there are no lumps. Mix together flour, cornstarch,

34 • THE IC OPTIMIST • Fall 17 About Us The Interstitial Cystitis Network is a health education and social advocacy company dedicated to interstitial cystitis and other pelvic pain disorders. Our mission is to present the best research, information, and support directly into the homes and offices of our members (patients, providers & IC researchers). In addition to our magazine, newsletters and apps, the ICN offers comprehensive support services for patients throughout the world, including the ICN support forum (www.ic-network.com/forum/), our patient assistance phone line and the “Living with IC” educational video series currently available on YouTube (www.youtube.com/icnjill/).

Our contact information: Interstitial Cystitis Network PO Box 2159 Healdsburg, CA 95448 USA. Toll-free: 800.928.7496 FAX: 707.538.9444

The IC Optimist is published four times a year and is available by US Mail ($50/year) or e-mail ($25/year). Professional subscriptions are also available. Material contained in the IC Optimist is copyrighted, all rights reserved. It may not be reproduced in whole, or part, without advance written permission. Reprint requests should be directed to: [email protected] What is IC? Interstitial cystitis (IC), also known as bladder pain syndrome, painful bladder syndrome, hypersensitive bladder syndrome or urologic chronic pelvic pain syndrome, is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain. People with severe cases of IC/BPS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia). Pain levels can range from mild tenderness to intense, agonizing pain. Pain typically worsens as the bladder fills and is then relieved after urination. Pain may also radiate to the lower back, upper legs, vulva and penis. Women’s symptoms may fluctuate with their menstrual cycle, often flaring during ovulation and/or just before their periods. Men and women may 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 previously thought to be a disease affecting mostly women, new studies suggest that men suffering from chronic non-bacterial prostatitis may also have IC, thus dramatically expanding the population data. It is not unusual for IC to run in families 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 can read 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 • Fall 17 • 35 2017 winning poster - Erin Dryburgh