Interstitial Cystitis/ Painful Bladder Syndrome

National Kidney and Urologic Diseases Information Clearinghouse

What is Ie/PBS? Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic U.S. Department of Health and region. The symptoms vary from case to Human Services case and even in the same individual. People may experience mild discomfort, pressure, Kidney NATIONAL tenderness, or intense pain in the bladder INSTITUTES OF HEALTH and pelvic area. Symptoms may include an urgent need to urinate, a frequent need to ~NIDDK urinate, or a combination of these symptoms. Pain may change in intensity as the bladder NATlONPoI IN'')Tll\ffE Of n'AeETES,l"N{) DlGESlrv"l; "'NO KIONf'v 01S~A.5E:S fills with urine or as it empties. Women's symptoms often get worse during menstrua tion. They may sometimes experience pain during vaginal intercourse. Urethra Because IC varies so much in symptoms and severity, most researchers believe it is not one, but several diseases. In recent years, scientists have started to use the terms blad der pain syndrome (BPS) or painful bladder syndrome (PBS) to describe cases with pain ful urinary symptoms that may not meet the strictest definition of Ie. The term IC/PBS includes all cases of urinary pain that can't be The urinary system attributed to other causes, such as infection or urinary stones. The term interstitial cysti tis, or IC, is used alone when describing cases Some people with IC/PBS find that their that meet all of the IC criteria established by bladder cannot hold much urine, which the National Institute of Diabetes and Diges increases the frequency of urination. Fre tive and Kidney Diseases (NIDDK). quency, however, is not always specifically related to bladder size; many people with In IC/PBS, the bladder wall may be irritated and severe frequency have normal bladder capac become scarred or stiff. Glomerulations ity when measured under anesthesia or dur pinpoint bleeding-often appear on the ing urologic testing. People with severe cases bladder wall. Hunner's ulcers-patches of of IC/PBS may urinate as many as 60 times a broken skin found on the bladder wall-are day, including frequent nighttime urination, present in 10 percent of people with Ie. also called nocturia. lC/PBS is more common in women than in How is IC/PBS diagnosed? men. An estimated 3.3 million U.S. women, Because symptoms are similar to those of or 2.7 percent, who are 18 years of age or other disorders of the bladder and there is older have pelvic pain and other symptoms, no definitive test to identify IC/PBS, doc such as urinary urgency or frequency, that tors must rule out other treatable conditions are associated with lC/PBS.\ An estimated before considering a diagnosis of IC/PBS. 1.6 million U.S. men, or 1.3 percent, who The most common of these diseases in both are 30 to 79 years old have persistent symp sexes are urinary tract infections and bladder toms, such as pain with bladder f111ing or pain cancer. In men, common diseases include relieved by bladder emptying, that are associ chronic prostatitis or chronic pelvic pain ated with PBS.2 syndrome. In women, endometriosis is a common cause of pelvic pain. lC/PBS is not What causes IC/PBS? associated with any increased risk of devel Some of the symptoms of IC/PBS resemble oping cancer. those of bacterial infection, but medical tests The diagnosis of IC/PBS in the general popu reveal no organisms in the urine of people lation is based on the with IC/PBS. Furthermore, people with lC/PBS do not respond to antibiotic therapy. • presence of pain related to the bladder, Researchers are working to understand usually accompanied by frequency and the causes of IC/PBS and to find effective urgency of urination treatments. • absence of other diseases that could Many women with IC/PBS have other condi cause the symptoms tions such as irritable bowel syndrome and Diagnostic tests that help rule out other fibromyalgia. Scientists believe IC/PBS may diseases include urinalysis, urine culture, be a bladder manifestation of a more general cystoscopy, biopsy of the bladder wall and condition that causes inflammation in vari urethra, and distention of the bladder under ous organs and parts of the body. anesthesia. Researchers are beginning to explore the possibility that heredity may playa part in some forms of IC In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families.

lBerry SH, Elliot! MN, Sut!orp M, et aJ. Prevalence of symptoms of bladder pain syndromelinterstitial cystitis among adult females in the United States. foumalof Urology. 2011:186:540-544 2Link CL, PuHiam SJ, Hanno PM, et al. Prevalence and psychosocial correlates of symptoms suggestive of painful bladder syndrome: results from the Boslon area community hea.lth survey. fOtlmal of Urology. 2008; 180:599-606.

2 Interstitial Cystitis/Painful Bladder Syndrome Urinalysis and Urine Culture Cystoscopy under Anesthesia Examining urine with a microscope and with Bladder Distention culturing the urine can detect and identify The doctor may perform a cystoscopic the primary organisms that are known to examination in order to rule out bladder infect the urinary tract and that may cause cancer. During cystoscopy, the doctor uses symptoms similar to IC/PBS. A urine sample a cystoscope-an instrument made of a hol is obtained either by catheterization or by low tube about the diameter of a drinking the clean catch method. For a clean catch, straw with several lenses and a light-to see the patient washes the genital area before inside the bladder and urethra. The doctor collecting urine midstream in a sterile con might also distend or stretch the bladder to tainer. White and red blood cells and bacte its capacity by filling it with a liquid or gas. ria in the urine may indicate an infection of Because bladder distention is painful for the urinary tract, which can be treated with people with IC/PBS, they must be given some an antibiotic. If urine is sterile for weeks or form of anesthesia for the proced ure. months while symptoms persist, the doctor may consider a diagnosis of ICIPBS. Biopsy Culture of Prostate Secretions A biopsy is a tissue sample that can be examined with a microscope. Tissue samples Although not commonly done, in men with of the bladder and urethra may be removed out a history of culture-documented urinary during a cystoscopy. A biopsy helps rule out tract infections, the doctor might obtain bladder cancer. prostatic fluid and examine it for signs of a prostate infection, which can then be treated with antibiotics.

Light pillar

Telescope lenses

Prism Prism Rod lenses

Cystoscope

3 Interstitial CystitislPainful Bladder Syndrome What are the treatments for The only drug approved by the U.S. Food Ie/PBS? and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (Rimso-50), Scientists have not yet found a cure for also called DMSO. DMSO treatment IC/PBS, nor can they predict who will involves guiding a narrow tube called a respond best to which treatment. Symptoms catheter up the urethra into the bladder. may disappear with a change in diet or treat A measured amount of DMSO is passed ments or without explanation. Even when through the catheter into the bladder, where symptoms disappear, they may return after it is retained for about 15 minutes before days, weeks, months, or years. Scientists do being expelled. Treatments are given every not know why. week or two for 6 to 8 weeks and repeated Because the causes of ICIPBS are unknown, as needed. Most people who respond to current treatments are aimed at relieving DMSO notice improvement 3 or 4 weeks symptoms. Many people are helped for after the first 6- to 8-week cycle of treat variable periods by one or a combination ments. Highly motivated patients who are of treatments. As researchers learn more willing to catheterize themselves may, after about IClPBS, the list of potentia] treatments consultation with tbeir doctor, be able to will change, so patients should discuss their have DMSO treatments at home. Self options with a doctor. administration is less expensive and more convenient than going to the doctor's office. Bladder Distention Doctors think DMSO works in several ways. Many people with ICIPBS have noted an Because it passes into the bladder wall, it improvement in symptoms after a bladder may reach tissue more effectively to reduce distention has been done to diagnose the inflammation and block pain. It may also condition. In many cases, the procedure is prevent muscle contractions that cause pain, used as both a diagnostic test and initial ther frequency, and urgency. apy. Researchers are not sure why disten tion helps, but some believe it may increase A bothersome but relatively insignificant side capacity and interfere with pain signals trans effect of DMSO treatments is a garliclike mitted by nerves in the bladder. Symptoms taste and odor on the breath and skin that may temporarily worsen 4 to 48 hours after may last up to 7 hours after treatment. distention, but should return to predistention Long-term treatment has caused cataracts levels or improve within 2 to 4 weeks. in animal studies, but this side effect has not appeared in humans. Blood tests, including Bladder Instillation a complete blood count and kidney and liver function tests, should be done about every During a bladder instillation, also called a 6 months. bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.

4 Interstitial CystitislPainful Bladder Syndrome Oral Drugs Because Elmiron has not been tested in Pentosan Polysulfate Sodium (Elmiron) pregnant women, the manufacturer recom mends it not be used during pregnancy, This first oral drug developed for IC was except in the most severe cases. Because approved by the FDA in 1996. In clinical Elmiron has mild blood-thinning effects, trials, the drug improved symptoms in it should be discontinued prior to planned 30 percent of patients treated. Doctors do surgery. not know exactly how the drug works, but one theory is that it may repair defects that Other Oral Medications might have developed in the lining of the Aspirin and ibuprofen may be a first line of bladder. defense against mild discomfort. Doctors The FDA-recommended oral dosage of may recommend other drugs to relieve pain. Elmiron is 100 milligrams (mg), three times Some people have experienced improvement a day. Patients may not feel relief from IC in their urinary symptoms by taking tricyclic pain for the first 4 months. A decrease In antidepressants or antihistamines. A tricyclic urinary frequency may take up to 6 months. antidepressant called amitriptyline (EJavil) Patients are urged to continue with therapy may help reduce pain, increase bladder for at least 6 months to give the drug an capacity, and decrease frequency and noctu adequate chance to relieve symptoms. If ria. Some people may not be able to take It 6 months of Elmiron therapy provides no because it makes them too tired during the benefit, it is reasonable to stop the drug. day. In people with severe pain, narcotic Elmiron's side effects are limited primarily to analgesics such as acetaminophen (Tylenol) minor gastrointestinal discomfort. A sma.ll with codeine or longer-acting narcotics may minority of patients experienced some hair be necessary. loss, but hair grew back when they stopped All drugs-even those sold over the taking the drug. Researchers have found no counter-have side effects. A person should negative interactions between Elmiron and always consult a doctor before using any drug other medications. for an extended amount of time. Elmiron may affect liver function, which should therefore be monitored by the doctor.

5 Interstitial Cystitis/Painful Bladder Syndrome Electrical Nerve Stimulation device, marketed as the Inter-Stim system, to treat urge incontinence. urgency-frequency Mild electrical pulses can be used to stimu late the nerves to the bladder-either syndrome, and urinary retention in people for whom other treatments have not worked. through the skin or with an implanted device. The method of delivering impulses through Diet the skin is called transcutaneous electrical nerve stimulation (TENS). With TENS, mild No scientific evidence links diet to IC/PBS, electric pulses enter the body for minutes but many patients find that alcohol, toma to hours, two or more times a day either toes, spices, chocolate, caffeinated and citrus through wires placed on the lower back or beverages, and high-acid foods may contrib just above the pubic area-between the ute to bladder irritation and inflammation. navel and the pubic hair-or through special Some people also note that their symptoms devices inserted into the vagina in women or worsen after eating or drinking products into the rectum in men. AJthough scientists containing artificial sweeteners. Eliminating do not know exactly how TENS relieves pel various items from the diet and reintroduc ing them one at a time may determine which, vic pain, it has been suggested that the elec if any, affect a person's symptoms. However, trical pulses may increase blood flow to the maintaining a varied, well-balanced diet is bladder, strengthen pelvic muscles that help important. control the bladder, or trigger the release of substances that block pain. Smoking TENS is relatively inexpensive and allows Many people feel smoking makes their symp people with IC/PBS to take an active part toms worse. How the by-products of tobacco in treatment. Within some guidelines, the that are excreted in the urine affect IC/PBS patient decides when, how long, and at what is unknown. Smoking, however, is a major intensity TENS will be used. It has been cause of bladder cancer. One of the best most helpful in relieving pain and decreasing things smokers can do for their bladder and frequency in people with Hunner's ulcers. their overall health is to quit. Smokers do not respond as well as nonsmok ers. If TENS is going to help, improvement Exercise is usually apparent in 3 to 4 months. Many patients feel that gentle stretching exercises help relieve ICIPBS symptoms. A person may consider having a device implanted that delivers regular impulses to the bladder. A wire is placed next to the tail bone and attached to a permanent stimulator under the skin. The FDA has approved this

6 Interstitial CystitislPainful Bladder Syndrome Bladder Training Physical Therapy People who have found adequate relief New evidence indicates that certain types of from pain may be able to reduce frequency physical therapy, when administered by an by using bladder training techniques. experienced physical therapist, may improve Methods vary, but basically patients decide IC/PBS symptoms. Patients should discuss to void-empty their bladder-at designated this option with their health care provider. times and use relaxation techniques and distractions to keep to the schedule. Surgery Gradually, they try to lengthen the time Surgery should be considered only if all avail between scheduled voids. A diary in which able treatments have failed and the pain is to record voiding times is helpful in keeping disabling. Many approaches and techniques track of progress. are used, each of which has advantages and complications that should be discussed with a surgeon. A doctor may recommend consult ing another surgeon for a second opinion before taking this step. Most surgeons are Your Daily Bladder Diary reluctant to operate because some people Thl~ diary will help you i1nd ~'our health carr.: lc,lm figure out lhr.: COlUSC~ of ~'our hbtldC:T conlrollrouhlc. The- "sillnplc"linc ~how~ you still have symptoms after surgery. how In uSC the- diary. Your namc: _ People considering surgery should discuss D;1I<· _ the potential risks and benefits, side effects, DidY'J'lf"",1 """~I_'''Y1IU ffip\ lilliif' .\([icknt.ol .. ~tr.,.,g doing 4otlhr and long- and short-term complications with 1t401hfOGlll l kI lU~tOfOl tlmd I~ ~~....." It. ~. t:::t.:~~ a surgeon, their family, and people who have f---+""':::"~::':"~'':..:'-.::-::."-I=-:::"",;"""... r..;:_::"~"',",';;;-,-:::' :fr=....c::•• ~'----r="-- ~ltu' t.(UP' ,./;9~ ~ S~c;: '~<8 1i:lll1l1i"g already had the procedure. Surgery requires 0(,0000 anesthesia, hospitalization, and weeks or '000000 '''~' months of recovery. As the complexity of the 000000 procedure increases, so do the chances for complications and failure. 000000

I)-I ~,.. 000 000 People should check with their doctor to '000 000 locate a surgeon experienced in performing

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J • ~ ... 'ooe 000 "u ". Two procedures-fulguration and resection 000 000 of ulcers-can be done with instruments

ll... II • '100.,1 ~'J.. .1,' M ...... 'UJI'.... I.ll~1 ...... '~"lll .....·;} ljQ,M."t ,!1.)I\ t.II ..,. ""..Ill f1~,.... " :",,~ •• j inserted through the urethra. Fulguration involves burning Hunner's ulcers with Bladder diary from What / need 10 know about Bladder COlltrol for Women at wWlv.kidlley.lliddk.nihgov electricity or a laser. When the area heals, the dead tissue and the ulcer fall off, leav ing new, healthy tissue behind. Resection involves cutting around and removing the

7 Interstitial CystitislPainful Bladder Syndrome ulcers. Both treatments are done under a second technique that also requires a stoma anesthesia and use special instrumen ts bu t allows urine to be stored in a pouch inserted into the bladder through a cysto inside the abdomen. At intervals throughout scope. Laser surgery in the urinary tract the day, the patient puts a catheter into the should be reserved for people with Hunner's stoma and empties the pouch. Patients with ulcers and should be done only by doctors either type of urostomy must be very careful with the special training and expertise to keep the area in and around the stoma needed to perform the procedure. clean to prevent infection. Serious potential complications may include kidney infection Another surgical treatment is augmentation, and small bowel obstruction. which makes the bladder larger. In most of these procedures, scarred, ulcerated, and A third method to reroute urine involves inflamed sections of the patient's bladder are making a new bladder from a piece of the removed, leaving only the base of the bladder patient's colon and attaching it to the ure and healthy tissue. A piece of the patient's thra. After healing, the patient may be colon-also called large intestine-is then able to empty the newly formed bladder by removed, reshaped, and attached to what voiding at scheduled times or by inserting a remains of the bladder. After the incisions catheter into the urethra. Only a few sur heal, the patient may void less frequently. geons have the special training and expertise The effect on pain varies greatly; IClPBS can needed to perform this procedure. sometimes recur on the segment of colon Even after total bladder removal, some used to enlarge the bladder. patients still experience variable IC/PBS Even in carefully selected patients-those symptoms in the form of phantom pain. with small, contracted bladders-pain, fre Therefore, the decision to undergo a cystec quency, and urgency may remain or return tomy should be made only after testing all after surgery, and they may have additional alternative methods and seriously consider problems with infections in the new blad ing the potential outcome. der and difficulty absorbing nutrients from Removing the bladder is not always done in the shortened colon. Some patients become patients with severe disease. Some urolo incontinent, while others cannot void at all gists recommend rerouting urine to a piece and must insert a catheter into the urethra to of bowel connected to the abdominal wall. empty the bladder. Urine is then collected in an external bag Bladder removal, called a cystectomy, is that is emptied periodically. While this another, infrequently used surgical option. procedure mayor may not improve pelvic Once the bladder has been removed. dif pain, it can decrease frequency and improve ferent methods can be used to reroute the quality of life for patients who experience urine. In most cases, ureters are attached frequent urges to urinate. to a piece of colon that opens onto the skin of the abdomen. This procedure is called a urostomy and the opening is called a stoma. Urine empties through the stoma into a bag outside the body. Some urologists are using

8 Interstitial CystitislPainful I3ladder Syndrome Are there any special in causing IC/PBS. In addition to fundino-b concerns regarding Ie/PBS? research, the NIDDK sponsors scientific workshops where investigators share the Cancer results of their studies and discuss future No evidence exists that IC/PBS increases the areas for investigation. risk of bladder cancer. Clinical Research Network Pregnancy The Interstitial Cystitis Clinical Research Researchers have little information about Network (ICCRN) is a product of two pregnancy and IC/PBS but believe that the NIDDK programs: the Interstitial Cystitis disorder does not affect fertility or the health Database (ICDB) Study and the Interstitial of the fetus. Some women find that their Cystitis Clinical Trials Group (ICCTG). IC/PBS goes into remission during preg Established in 1991, the ICDB was as-year nancy, while others experience a worsening prospective cohort study of more than of their symptoms. 600 men and women with symptoms of urinary urgency, frequency, and pelvic pain. Coping The study described the longitudinal changes The emotional support of family, friends, and of urinary symptoms, the impact of IC on other people with Ic/PBS is very important quality of life, treatment patterns, and the in helping patients cope. Studies have found relationship between bladder biopsy find that people who learn about the disorder and ings and patient symptoms. The ICCTG become involved in their own care do better was established in 1996 as a follow-up to than people who do not. The Interstitial the ICDB study. The clinical trials group Cystitis Association maintains a list of support developed two randomized, controlled groups that can viewed at www.ichelp.org. clinical trials of promising therapies, one using oral therapics-pentosan polysul fate sodium (Elmiron) and hydroxyzine Hope through Research hydrochloride (Atarax)-and the other Although answers may seem slow in coming, administering intravesical treatment using researchers are working to solve the painful Bacillus Calmette-Guerin (BCG). BCG is a riddle of IC/PBS. Some scientists receive vaccine for tuberculosis that stimulates the funds from the Federal Government to help immune system and may have an effect on support their research, while others receive the bladder. The ICCTG also developed and support from their employing institution, conducted ancillary studies of various bio drug pharmaceutical or device companies, or markers such as heparin-binding epidermal patient support associations. growth factor-like growth factor (HB-EGF) and anti-proliferative factor (APF). The NIDDK's investment in scientifically meritorious IC/PBS research across the In 2003, the ICCTG became the ICCRN, United States has grown considerably since which has conducted additional clinical trials 1987. The Institute now supports research over a second S-year period. One of these that looks at various aspects of IC/PBS, such trials studied the effectiveness of amitrip as how the components of urine may injure tyline in treating PBS, which includes Ie. the bladder and what role organisms iden Amitriptyline has FDA approval for the tified by nonstandard methods may have treatment of depression, but researchers

9 Interstitial Cystitis/Painful Bladder Syndrome believe the drug may work to block nerve Suggested Reading signals that trigger pain in the bladder and The materials listed below may be found may also decrease muscle spasms in the in medical libraries, in many college and bladder, helping to cut both pain and fre university libraries, through interlibrary loan quent ulination. The study could not prove in most public libraries, and at bookstores. that amitriptyline was effective in treating Items are listed for information only; inclu IC/PBS, although many patients seemed to sion does not imply endorsement by the benefit from a combination of amitriptyline National Institutes of Health. and behavioral modification with stress reduction. Articles and Book Chapters In 2008, the NIDDK launched the Multidis Keay SK, Warren Jw. Is interstitial cystitis ciplinary Approach to the Study of Chronic an infectious disease? fnternational Journal Pelvic Pain (MAPP) Research Network. The ofAntimicrobial Agents. 2002;19(6):480-483. MAPP Research Network is designed to The Interstitial Cystitis Clinical Trials Group. take a collaborative, whole-body approach to A pilot clinical trial of oral pentosan poly the study of IC/PBS and chronic prostatitis/ sulfate and oral hydroxyzine in patients chronic pelvic pain syndrome (CP/CPPS). with interstitial cystitis. .loumal of Urology. This program brings together experts from 2003;170(3):810-815. nonurologic fields such as neurology and epidemiology as well as traditional urologic The Interstitial Cystitis Clinical Trials Group. researchers to study IC/PBS and CP/CPPS A randomized controlled trial of intravesical in the context of other chronic pain syn Bacillus Calmette-Guerin for treatment of dromes such as fibromyalgia, chronic fatigue refractory interstitial cystitis. Journal of syndrome, and irritable bowel syndrome. Urology. 2005;173(4):1186-J 191. While traditional research has focused on Hanno P, Lin AT, Nordling J, Nyberg L, van the bladder as the source of pain in IC/PBS Ophoven A, Ueda T Bladder pain syn and on the prostate as the source of pain drome. In: Abrams P, Cardozo L, Khoury in CP/CPPS, researchers now believe that S, Wein A, eds. Incontinence. Paris: Health an underlying cause common to all chronic Publication Ltd.; 2009: 1459-1518. pain syndromes may lie somewhere outside these specific organs. The MAPP Research Books and Booklets Network includes six. Discovery Sites that will Moldwin RM. The Interstitial Cystitis SUivival conduct individual and collaborative trials Guide: Your Guide to the Latest Treatment and Lwo Core Sites for data and tissue bank Options and Coping Strategies. Oakland. ing and analysis. The program is scheduled CA: New Harbinger Publications, Inc.; 2000. to be funded for 5 years. (Available by calling 1-800-HELP-ICA or Participants in clinical trials can playa more 1-800-435-7422.) active role in their own health care, gain Sandler GG, Sandler A. Patient to Patient: access to new research treatments before Managing fnterstitial Cystitis & Overlapping they are widely available, and help others Conditions. New Orleans, LA: Bon Ange by contributing to medical research. For information about current studies, visit LLC; 2000. www.ClinicaITrials.gov. Sant G, ed. Interstitial Cystitis. Philadelphia: Lippincott-Raven; 1997.

10 Interstitial Cystitis/Painful Bladder Syndrome For More Information National Kidney Foundation 30 East 33rd Street American Urological Association Foundation New York, NY 10016 1000 Corporate Boulevard Phone: 1-800-622-9010 or 212-889-2210 Linthicum, MD 21090 Internet: www.kidney.org Phone: 1-800--828-7866 or 410-689-3700 Fax: 410-689-3998 National Organization of Social Security Email: [email protected] Claimants' Representatives Internet: www.UrologyHealth.org 560 Sylvan Avenue Englewood Cliffs, NJ 07632 American Chronic Pain Association Phone: 1-800-431-2804 P.O. Box 850 Email: [email protected] Rocklin, CA 95677 Internet: www.nosscr.org Phone: 1-800-533-3231 Email: [email protected] Social Security Administration Internet: www.theacpa.org Office of Public Inquiries Windsor Park Building American Pain Society 6401 Security Boulevard 4700 West Lake Avenue Baltimore, MD 21235 Glenview,IL 60025 Phone: 1-800-772-1213 Phone: 847-375-4715 Internet: www.ssa.gov Email: [email protected] Internet: www.ampainsoc.org Local offices can be found in the telephone book under U.S. Government, Department American Urogynecologic Society of Health and Human Services. 2025 M Street NW, Suite 800 Washington, D.C. 20036 United Ostomy Associations of America, Inc. Phone: 202-367-1167 PO. Box 512 Fax: 202-367-2167 Northfield, MN 55057-0512 Email: [email protected] Phone: 1-800-826-0826 Internet: www.augs.org Email: [email protected] Internet: www.ostomy.org International Association for the Study of Pain 111 Queen Anne Avenue North, Suite 501 Acknowledgments Seattle, WA 98109-4955 Publications produced by the Clearinghouse Phone: 206-283-0311 are carefully reviewed by both NIDDK sci Email: [email protected] entists and outside experts. This publication Internet: www.iasp-pain.org was reviewed by Philip Hanno, M.D., Uni versity of Pennsylvania. Interstitial Cystitis Association 100 Park Avenue, Suite 108A Rockville, MD 20850 Phone: 1-800-HELP-ICA (1-800-435-7422) or 301-610-5300 Fax: 301-610-5308 Email: [email protected] Internet: www.ichelp.org

11 Interstitial CystitislPainful Bladder Syndrome You may also tind additional information about this National Kidney and topic by visiting MedlinePlus at wlI'w.medlincplus.gov. Urologic Diseases This publication may contain information about medications. When prepared. this publication Information Clearinghouse included the most current information available. For updotcs or for questions about any medications. 3 Information Way contact the U.S. Food and Drug Administration 1011 Bethesda, MD 20892-3580 free at J-S88-1NFO-FDA (J-888-463-6332) or visit Phone: 1-800-891-5390 www.fda.gov. Consult your health care provider for more information. TIY: 1-866-569-1162 Fax: 703-738-4929 Email: [email protected] Internet: www.urologic.niddk.nih.gov The U.S. Government does not endorse or favor any spccific commercial product or company. Trade. The National Kidney and Urologic Diseases proprietory, or company names appearing in this document are used only because they are considered Information Clearinghouse (NKUDIC) necessary in the context of the information provided. is a service of the National Institute of If 0 product is not mentioned. the omission does not Diabetes and Digestive and Kidney Diseases mean or imply that the product is unsatisfactory. (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services. Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

This publication is not copyrighted. The Clearinghouse encourages users of this publication to duplicate and distribute as many copies as desired. This publication is available at wwwurologic.l1iddk.l1ih.guv.

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health

N1H Publication No. J1-322U September 201 J The Ie-Smart Diet

Many people with interstitial cystitis (IC) find that simple changes in their diet can help to ontrol IC symptoms and avoid IC flare-ups. Typically, Meats/Fish avoiding foods high in acid and potassium- Allowable: Poultry, os well as beverages containing caffeine and fish, and some meats alcohol-is a good idea. This helpful guide can (except those listed belowl

help you make "IC-Smart" meal choices. Keep Avoid: Aged, conned, cured, processed it handy for easy reference when dining out or or smoked meats/fish; anchOVies; caviar; chicken livers; corned beef; and meats when preparing meals at home. that contain nitrates or nitrites

Fruits Nuts/Oils Allowable: Allowable: Bananas, coconuts, dotes, blueberries, Most oils, almonds, cashews, and pine nuts melons (except cantaloupe), and pears

Avoid: 01 ° All other fruits and juices Most other nuts

Vegetables Beverages Allowable: Allowable: Homegrown tomatoes and mony Bottled or spring water; decaffeinated, vegetables [except those listed below) acid-free coffee or tea; some herbal teas; fI t soda

Alcoholic beverages, including beer and wine; Avoid: Store-bought tomatoes, onions, carbonated drinks, such as soda; coffee tofu, soybeans, lima beans, and tea; and fruit juices, especially and fava beans citrus and cranberry

Milk/Dairy Seasonings Allowable: Milk, American cheese, Allowable: cottage cheese, frozen yogurt, and Garlic and some other seasonings white chocolate (except those listed bel w)

Avoid: Yogurt, sour cream, • : Mayonnaise, miso, soy sauce, soy milk/cheese, aged heeses, sol d dressing, vinegar, and spicy foods and chocolate (especially Chinese, Mexican, Indian, and Thai foods) Carbohydrates/Grains Allowable: Pasta, rice, potatoes, and some breads (except those Preservatives listed below)

Avoid: oid Rye and sourdough breads Benzyl alcohol; citric acid; monosodium glutamate (MSGJ; aspartame (NutraSweet*); saccharin; and foods containing preservatives, artificial ingredients/colors °NutraSweel is a registered trademark of NutraSweel Property Holdings, Inc.

-- -- =------~ - Dining Out: The Ie-Smart Way

Call ahead

Before making plans to eat at a restaurant, it's a good idea to call ahead and ask about the menu. This will enable you to enjoy your me I and feel good afterward, too!

When ordering your meal

Ask questions

- Ask your waiter what spice are used in particular dishes

- If you are unsure of an ingredient, ask what it is

Modify your selection

-It's your meal-don', be afraid to specify how you would like it prepared

- When ordering a salad, tell the waiter flO tomatoes or onions

- Substitute a plain baked potato for a spicy rice combination

- Ask for salad dressings and other possible "trigger" items to be served "on the side"

Be careful with ethnic foods

- Many ethnic foods contain spices that you may be unfamiliar with

Know your "Ie-Smart" menu choices

- Most restaurants offer plain (not marinated) steak and chicken

- Some chain restaurant foods may contain preservatives when sold in the grocery store

Janssen J

Janssen Pharmceuticals, Inc.

IC is a chronic, yet manageable, bladder condition, characterized by r- Bladder II1uc05al linll19 bladder or pelvic pain, pain during or after sexual intercourse, urinary / (glyco aminoglycan laye ') urgency and frequency, and waking one or more times a night ,...--. Irritalinq 5ubst.ln ", to urinate. -!:I-...... in til . ulin ~ ~ UrothcliulTl I

IC may be caused by a breakdown of the protective lining of the bladder, which may allow irritating substances in the urine to aggravate and inflame tile bladder wall, resulting in pain

-..:...,,~-+-- Inflarnmalion While the precise way ELMIRON® works is not fully understood, ELMIRON® is thought to adhere to the bladder mucosal lining, Irrilillcd nerv" preventing potentially irritating substances in the urine from reaching the bladder wall.

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P. HMIR N Ear/~I Assi t Co·Pa' uppo, rag am • Pay as little as $5 per month-for up to 4 months of ELMIRON® treatment

~ Sign up at www.orthoelmiron.ccim

EUvllRON® is a prescription medication used to treat the pain and discomfort of interstitial cystitis (lC) It is not known exactly how ELMIRON

This product is available by prescription only

ELMIRON® should not be taken if you have aknown hypersensitivity to the The most common side effects are hair loss, diarrhea, nausea, blood in drug or similar drugs. the stool, headache, rash, upset stomach, abnormal liver function tests, EUVlIRON® is aweak blood thinner (anticoagulant) which may increase dizziness, and bruising. bleeding. Call your doctor if you will be undergoing surgery or if you are taking - Hair loss, when it occurred, was almost always limited to a single area or III begin taking anticoagulant therapy such as warfarin sodium, heparin, of the scalp high doses of aspirin, or anti-inflammatory drugs such as ibuprofen Tell your doctor about any side effect that bothers you or does not go away Tell your doctor You are encouraged to report negative side effects of prescription drugs to - If you are pregnant or plan on becoming pregnant. the FDA. Visit wvvwfdagov/medwarch, or call1-800-FDA-1 088. Please see full Product Information for ELMIRON") - If you have any liver problems Please read the ELMIRON® Patient leaflet and discuss it with your doctor.

I It is uery important that you take £LmIROn@ as directed and stick with it

S mp!on relief may take 3 to 6 months '(ou should take 1 caiJsule of EUvlIRON't' by mouth 3 times a day, with water, at least 1 hour before or 2 hours after meals. Each capsule contains 100 mg of ELMIRON® Allhough you may use other IC treatment options as needed, you should continue to take ELMIRON'& until otherwise instructed by your healthcare professional

Do not stop taking ELMIRON'~ or reduce your dosage just because you are feeling better or because you think ELMIRON® may not be working right away Whil. taking ELMIRO , avoid anticoagulant therapy, such as warfarin sodium, heparin, high doses of anti-inflammatory drugs, such as ibuprofen, until speaking with your healthcare professional Schedule follow-up visits with your healthcare professional once a month for the first few months

Lifestyle modifications you can make to help manage symptoms Dietary changes: Avoid spicy or acidic foods and beverages containing caffeine and alcohol Gentle exercise: Walking, yoga, and low-impact aerobics may be beneficial Stress-reduction and relaxation techniques: Try controlled breathing exercises, warm baths with baking soda, and applying warm or cold compresses on the lower abdomen Bladder trai ing: Practice scheduled voiding patterns Physical therapy: Gentle stretching and pelvic floor muscle-relaxation exercises Other therapies

Add'ltlonal resources, such as IC-friendly recipes, and stress and coping techniques, are available through the following www.orthoelmiron.com: A Janssen Pharmaceuticals, Inc., Web site offering a wide range of information on IC and ELMIRON® to patients

l Journey to Relief : A free e-mail support program that provides you with great tips, resources, and money-saving offers Interstitial Cystitis Association (www.ichelp.com): A national, nonprofit organization offering information and support to IC patients and their families

ELMIRON"' is a prescription medication used to treat the pain and discomfort of interstitial cystitis (lC) It is not known exactly how ELMIRON

The most common side effects are hair loss, diarrhea, nausea, blood in the stool, headache, rash, upset stomach, abnormal liver function tests, ELMIRON~' should not be taken if you have a known hypersensitivity to the dizziness, and bruising. ru or similar drugs - Hair loss, when it occurred, was almost always limited to asingle area ELMIRON'~' is aweak blood thinner (anticoagulant) which may increase of the scalp bleeding Call your doctor if you will be undergoing surgery or if you are taking orwdlbegin taking anticoagulant therapy such as warfarin sodium, heparin, Tell your doctor about any side effect that bothers you or does not go away. high doses of aspirin, or anti-inflammatory drugs such as ibuprofen You are encouraged to report negative side effects of prescription drugs to the FDA. Visit wwwfdagov/medwatch, or call1-800-FDA-l 088. Tell your doctor Please see full Product Information for ELMIRON®. - If you are pregnant or plan on becoming pregnant. Please read the ELMIRON:t> Patient leaflet and discuss it with your doctor - If you have any liver problems

FLMIRON is' legis .red trodemark 01 leva Global Resplra ory Research, Inc .. under license to Janssen Pharmaceuticals. Inc.

Janssen Pharmaceuticals, Inc. Janssen J

lJa'15~e') PharlHilo::ell ica)s. Inc. 20'1 AuguS\ 2011 02E09048R3 atie t Assessmen' Questionna·re Todoy's date: _ This questionnaire may help you and your doctor monitor your interstitial cystitis (IC) symptoms

Before you begin treatment with ELMIRON'" (penlosan polysulfate sodium), be sure to fill out the questionnaire below Remember, ELMIRON" may have a gradual effect on symptoms-sometimes laking up 10 3 months until noticeable improvement is seen. It's important to take ELMIRONs, continuously as your doctor has prescribed. After 3 months of taking ELMIRON":, toke the questionnaire again. By reviewing your answers, you and your doctor will be able to track your progress. Instructions For each question below, please circle the answer that best describes how you feel Then, mark your score (0 to 4) for each answer in the column on the right. When you are finished, odd up the numbers in this column for your totol score. ~

1 How many times do you go to Ihe bathroom during the day? 36 7-10 11-14 15·19 20+ a. How many times do you go to the bathroom at night? 0 2 3 4+ - 2 b. If you get up at night to go 10 the bathroom, Never Mildly Moderately does it bo her you? Severely 3 Are you currently sexually active' YES __ NO a. IF YOU ARE SEXUAllY ACTIVE, do you now or have you ever had poin or symptoms during or after sexual Never Occasionally Usually Always 4 intercourse' b. If you have pain, does il make you avoid Never Occasionally Usually Always sexuol intercourse?

Do you have poin associated with your bladder or in your :;2'"is (vosino, lower abdome. , urethra, perineum, testes, Never Occasionally Usually Always 5 ()' scratum)' If you do not have pain, please skip question 6.

a. if you have pain, is it usually. No Pain Mild Moderate Severe 6 b. Does your pain bOlher you 2 Never Occasionally Usually Always

Do you have urgency ofter going 10 the bathroom' Never Occasionally Usually Always 7 If you do not have urgency, please skip final question.

No a. If you have urgency, is it usually Mild Moderate Severe 8 Urgency b. Does your urgency bOlher you? Never Occasionally Usually Always

What is EI.MIRON' (pentosan polysulfate sodium)? ELMIRON- is a prescription medication used to treat the pain and discomfort of interstitial cystitis [IC). It is not known exactly how ELMIRONC works, but it is not a pain medication like aspirin or acetaminophen and therefore must be taken continuously for relief os prescribed by your doclor. Important Safety Information • E MIRON~' should not be token if you have a known hypersensitivity to the drug or similar drugs. • ELMIRO ' is a weak blood thinner [anticoagulant) which may increase bleeding. Call your doctor if you will be undergoing surgery or if you are taking or will begin taking anticoagulant therapy such os warfarin sodium, heparin, high doses of aspirin, or anti.inflammatory drugs such as ibuprofen. • Tell your doctor: - If you are pregnant or plan on becoming pregnant. - If you have any liver problems • The most common side effects are hair loss, diarrhea, nausea, blood in the stool, headache, rash, upset stomach, abnormal liver :""ction U tests, dizziness and bruising. -.0 - Hair loss, when it occurred, was almost always limited to a single area of the scalp. o o Tell your doctor about any side effect that bothers you or does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA Visit www.fda.gov/medwatch, or call 1-800·FDA-1088. Please see the accompanying full Product Information for ELMIRON;[). Please read the ELMIRONs Po\iell\ \eofle\ and discuss any questions with your doctor.

www.orthoelmiron.com

Janssen Pharmaceuticals, Inc. Janssen

Q JalnSS~il Pharmi;l:eei.)tlcol~. Inc. 2013 Mnrci12013 K02E12007 What causes Ie? How does ELMIRON work? • IC may be caused by damage to the mucous layer • ElMlRON is believed to act as a buffer, preventing that protects the bladder wall. This damage may potentially irritating substances in the urine from reaching allow irritating substances in the urine to aggravate the bladder wall. Therefore, ElMlRON is thought to treat and inflame the bladder wall, resulting in pain an underlying issue of IC, as well as the symptoms

Replenished protec1ive lining

Irritated nerve ----'\;;::'::~'"~.."'''

For additional information on IC, please visit www.allaboutic.com or www.ichelp.org. To enroll in the ElMIRON patient support program and access valuable product coupons and helpful tools, please visit www.orthoelmiron.com. ELMIRO The mechanism of action of ElMIRON in interstitial cystitis is not fully understood. Oer'vSar J)I'~SII a-e sod I{II 2~ What should I expect with ELMIRON? Important Safety Information • ELMIRON has helped many people with IC and it may help ELMIRON is indicated for the relief of bladder pain you. Studies show that ELMIRON relieves bladder pain, in or discomfort associated with interstitial cystitis. some patients, in as soon as 3 months ELMIRON has been shown to be generally well • It is important to remember: tolerated. The most common side effects were blood in stool, diarrhea, nausea, hair loss, headache, ~ A single lOO-mg capsule of ELMIRON should be rash, upset stomach, abdominal pain, liver function taken 3 times a day abnormalities and dizziness. When side effects did ~ Symptom improvement is generally gradual and relief occur, they were generally mild and usually did not may require 3 to 6 months of continuous therapy. interfere with continuing treatment. Hair loss, when Therefore it is very important that you take ELMIRON as it occurred, was almost always limited to a single directed and stick with it area of the scalp, and it grew back when ELMIRON was discontinued. ELMIRON is a weak anticoagulant ~ While you may use other IC treatment options as needed, (blood thinner), which may increase bleeding. Call you should continue to take ELMIRON until your doctor if you will be undergoing surgery or will otherwise instructed by your healthcare professional begin taking anticoagulant therapy, such as warfarin, ~ Do no\ slop laking ELMIRON or reduce your dosage just heparin or high doses of aspirin; or anti-inflammatory because you are feeling better or because you think drugs, such as ibuprofen. ELMIRON may not be working right away Please see full Prescribing Information. ~ If you don't experience improvement within 6 months, talk ELMIRON is a registered trademark of IVAX Research, Inc., to your healthcare professional. You may not benefit from under license to Ortho-McNeil-Janssen Pharmaceuticals, Inc. continued treatment

EEl Bayer HealthCare Pharmaceuticals ELMIRON a.,- ... ,.e-_ "-. ~ ,,~O~~ t""' .,.",...,... --.'I r .. 581' pcy ura's "'OdL ~Dr.~ irrillard' . ~ Hbsorb euer1jthing better... nutrients, uitamins, minerals, etL For over 40 years Willard Water has been used by people all over the world as a foundation for excellent balance. Willard Water offers many benefits when consumed daily. Benefits • Natural Source of Macro and Trace Minerals Essential to Maintaining Optimal Balance • Highly Efficacious and Bio-available Formula • Reduction of Stress Due to the Body's Increased Ability to Assimilate Vital Nutrients More Efficiently • Natural Free Radical Scavenging Activity • More Cellular Energy = Increased Energy • Overall Homeostasis • Improved Functionality of the Body's Natural Defense System • Highly Alkaline - pH of 12.3 Q. What is Willard Water exactly? A. Pul simply Willard Water' is an altered form of water that has been activated with the addition of apatented micelle catalysl developed by Dr John W. Willard, PhD. When consumed daily, Dr Willard's Water' has lome very unusual properties, setting it aparr Irom regular water, leading to several benefits including enhanced nutrient assimilation, Q. Can WIII.,d Water be increased toxin removal, and cellular stressfeduction. consumed by people with a gluten Intolerance1 Q. How can the product help A. Yes'lndividuals who have agluten intolerance often have problems with with vitamln/minerall nutrient absorption and both digestion and the absorption of tOllin removal? nutrients. Because Dr Willard's Water A. Willard Water' breaks down food and aids digestion and improves nulrient toxin partides in the bloodstream into assimilation lor all users by helping the body break down lood, Dr Willard's even smaller partides whl(h allows the Water can be consumed by people with body and cells to more readily absorb gluten intolerance. the good while more efficiently fiushing the bad.

Q. How does the product help with my pH or Int rnal alkalinity? For questions or A, Expertl believe Ihatthe body's pH levell are akey factor in determining additional one'l overall balance. Willard Wate, has information contact avery high alkaline pH value of 12.3 and Dr. Willard's at when diluted as directed permanently 888-379-4552 or increases water pH by up to two points www.drwillard.com. which helpI rellore agood pH balance in the body. I terstitial Vicki Ratner, MD, leA President & Founder Co-Chairs Cysti is & • Alan Wein, MD Chief of Urology, University of Pennsylvania Health System • Philip M. Hanno, MD xua 0ty Clinical Professor of Urology, University of Pennsylvania Health System

o,;rd h1emb"rs • Daniel Brookoff, MD, PhD University of Tennessee, Memphis • David A. Burks, MD T e Interstitial Henry Ford Hospital, Detroit • Daniel B. Carr, MD Cystitis Tufts-New England Medical Center, Boston • Toby Chai, MD University of Maryland Medical Center Association • Robert J. Evans, MD Moses Cone Health System, Greensboro, NC • David Kaufman, MD Columbia College of Physicians & Surgeons • Susan Keay, MD, PhD Division of Infectious Diseases • University of Maryland School of Medicine • Robert Moldwin, MD Long Island Jewish Medical Center • Diane Newman, RN, MSN University of Pennsylvania Medical Center • Christopher K. Payne, MD Department of Neurourology Stanford University School of Medicine • John W. Warren, MD Division of Infectious Diseases University of Maryland School of Medicine • Ursula Wesselmann, MD, PhD Johns Hopkins University School of Medicine • Kristene E. Whitmore, MD Graduate Hospital, Philadelphia Patients, Researchers, Caregivers l~( t 1/ COil (I. ln' • Monica Liebert, PhD Putting the Pieces Together Director of Research American Urological Association

.,,,;..00 10 NIDO'" 110 North Washington Street • leroy M. Nyberg, MD, PhD Suite 340 Urology Director, NIDDK Rockville, MD 20850

Tel: 301.610.5300 Fax: 301.610.5308 Toll-Free: 1-800-HELP-ICA ~~",,,,,-)\\n,,,,,,, "n''''lte,,'c) This brochure is made possible '" .. . .. by an educational grant from Ortho Women's Health & Urology E-mail: [email protected] Website: www.ichelp.org ©OrUlo-McNeil Phannaceutlcal, Inc. 2006 March 2006 02E8872R1·A

I J" 9 I ment with alternatives to intercourse. help "cool the burn."

With medical supervision, some IC patients have • Small finger-shaped balloons filled with water can tried using at-home bladder instillations of local anes be frozen and then inserted into the vagina briefly thetics such as lidocaine or Marcaine'" either before immediately after sex to help reduce irritation. or after sex. (If you are doing self-catheterization, be sure to do so only in consultation with your doctor.) • To reduce the risk of bladder infection, drink water or other fluids before and after sex. Voiding a rea . \ sonable amount of urine after sex helps to flush out the urinary system. Diaphragms have also been If intercourse is just too painful, there are reasonable identified as causing repeated urinary tract infections alternatives. "Outercourse" is sexual activity that in some women, as have spermicidal jellies or lubri includes everything except intercourse: sex talk, cants containing nonoxynol-9. sharing fantasies, cUddling, reading erotica, watching sexy videos, kissing from head to toe, bathing together, sensual massage, individual or mutual masturbation, and oral sex. Having a painful, chronic illness like IC often results in a loss of sexual interest or ability to become In the past, any sexual activity other than sexual aroused. The need for frequent trips to the toilet intercourse was viewed as something that "bad girls" may make people feel undesirable or sexually did to please men, and today, some women remain inadequate. Pain, stress, depression, the menstrual reluctant to try outercourse for this reason. But oral cycle, and certain medications, including antihista sex and other types of outercourse are pleasurable mines, painkillers, and antidepressants, may also and perfectly normal. Some women who have IC find interfere with sexual interest and activity. If you think that oral sex or stimulation of their genitals with you are feeling depressed right now, it would hands or fingers is more comfortable than probably be helpful to see a psychotherapist. If you intercourse. The partner with IC can still bring their are not sure of the type of therapy you need, there partner to orgasm orally or manually, even if IC are various guides sold in bookstores that may be symptoms are too painful for intercourse. Couples helpful. A sex therapist may also be of help in sug can also try a form of intercourse in which the gesting ways to increase sexual interest and activity. woman crosses her legs and the man thrusts his " penis between her thighs. --- I, Pain during sex can be the result of insufficient vaginal lubrication. This may be due to less frequent IC patients have come up with a variety of creative sexual activity, drugs that dry out mucous suggestions to help make sex more comfortable. membranes, or lowered estrogen levels after These include: menopause. Pain can also result on penetration if the female partner is not aroused enough to produce • Reaching orgasm quickly to reduce friction on natural lubrication. In this case, delaying penetration sensitive tissues. until the woman is fully aroused is helpful.

• Being very aroused before penetration, or using a Regular sexual activity, either alone or with a partner, vibrator. Using vibrators is intolerable to some, but is often enough to keep the vagina moist. others say that a small, battery powered vibrator helps to achieve orgasm quickly and reliably, thus Try natural or synthetic lubricants, including avoiding excessive friction. Also, the man should be vegetable oil, aloe vera gel, water-based lubricants, very aroused before penetration so that orgasm and other lubricants such as AstrogJide". You can find comes quickly, and there will be less trauma from these products in pharmacies next to the feminine prolonged or deep thrusting. hygiene products or condoms, or they can be ordered through various mail order companies or • For pain or burning after sex, a cold gel pack may

I / online. Adding Vitamin E oil to your lubricant may aid healing of raw tissues. • Various articles from our Resource Materials Guide • Estrogen cream. placed directly into the vagina. available through the ICA. will help keep the vaginal tissues moist. However, estrogen is not a cure. it merely relieves symptoms. and there are certain risks attached to regular use, so consult your doctor before using. The ICA is a non-profit organization working interna Erl.,,-·~ilt r}r, l I:'rH:, tionally on behalf of all IC patients. Its goals are: Men of any age. on occasion. may find it difficult to • To provide the most comprehensive and up-to-date become erect or to have an erection which is hard information on IC. enough for intercourse. However. erectile difficulties become more common after the age of 40. Some • To provide IC patients, their families and friends men with IC have difficulties with erections because with a support network. of genital pain, or embarrassment that their frequent need to void will disrupt sexual activity with a part • To educate the medical community and the public ner. Many medical conditions. including diabetes. about IC. heart, and circulatory diseases can also contribute to erectile problems. Partners of IC patients may • To advocate in the public and private sectors for develop erectile problems because they are afraid to research funding and patients' rights. hurt the woman during intercourse. Finally. excessive use of alcohol, depression, anxiety, and insufficient • To promote and provide research funding to find arousal can also interfere with erection. effective treatments and a cure for IC. Whether erectile failure occurs regularly or occasion ally, it is important to remember that intercourse is only one way of having sex; there are many other GenerallC Brochure> ways that you and your partner can give each other IC & Diet Brochure> pleasure. Some men find that focusing on whole body sensuality instead of genital sensations alone IC & Self-Help Brochure helps reduce performance pressure, and enhances Ie & Men Brochure their ability to become erect. Even more important, Vulvar Pain Brochure good communication with a loving partner is an essential ingredient in improving sex. There are a > Spanish Language Version also available number of urological treatments available for alleviat b~t ing erectile problems, these should be used only The ICA does not engage in the practice of medicine. It is not a medical on the advice of a trained physician. Often. couples authority nor does it claim to have medical knowledge. In all cases, the find that sex therapy alone helps them improve their ICA recommends that you consult your own physician regarding any course of treatment Or medication. sexual lives greatly. Copyright © 2006 The Interstitial Cyslitis Association (ICA), Maryland. Material may not be reproduced in whole or in part without special written permission.

RBX06J About the leA The Interstitial Cystitis Association (ICA) is the only nonprofit health association dedicated to improving the quality of healthcare and lives of people living with interstitial cystitis (IC).

Conquering Ie. Changing Lives.

The ICA provides advocacy, research funding, and education to ensure early diagnosis and optimal care with dignity for people affected by Ie. Our work is made possible through the generosity and vision of individuals as well as of foundations and corporations.

Donations help us to keep programs and services operating at peak strength so that every IC patient who needs help can have it-no matter where he or she may live, no matter how disabled they may be.

Your donation dollars also enable the ICA to continue to fund new IC research projects as well as to work closely with Congress to ensure ongoing federal funding of IC-specific research.

Helpful links • www.ichelp.org/AboutIC • www.ichelp.orgjVulvodynia

The information provided by the ICA is designed to support, not replace, the relationship that exists between an individual and his/her healthcare provider.

Content of this brochure Interstitial has been developed by ICA. Printing of this brochure Cystitis Janssen is sponsored by Janssen COMPAHIl;S PHARMACEUTICAl. Pharmaceuticals, Inc. 01" 'or»,"lO')1."9o~u,0't\ T Association

www.ichelp.org

K02EllOl!'!.RBV IC and Vulvodynia What Causes Vulvodynia in Ie Patients? The term vulvodynia (pronounced vulvo-DIN-ee-ah) Although the precise cause is not known, some re means pain in the vulva-the female external genital searchers speculate that vulvodynia and Ie are closely organs. The condition is very common in women with Ie. related because the bladder, urethra, and vulvovaginal tissues have a common embryonic origin. These struc Vulvodynia can make sex or any other activity that puts tures are also surrounded and supported by the same pressure on the area painful-prolonged sitting, bicycle muscles, and the nerves that serve them communicate or horseback riding, inserting a tampon, or even wear with the same areas of the spinal cord. Some of the ing fitted pants. Many treatments are available that can proposed causes of vulvodynia include: ease this pain and help you regain physical activity and a • nerve injury or irritation or increased density of nerve satisfying sex life. fibers • allergies or sensitivities Types of Vulvodynia • inflammation There are two main types of vulvodynia, which some • abnormal tissue response to infection, trauma, or times co-exist: substances in the environment • hormonal changes Vulvar vestibulitis syndrome (also called provoked • genetic susceptibility to pain or vulvar inflammation vestibulodynia) or inability to combat vulvovaginal infection In this type, pain is limited to the entrance to the vagina, • hypersensitivity to yeast (Candida) or other organ called the vestibule. The pain is usually provoked by isms external touch or by pressure from sexual intercourse, • pelvic floor muscle dysfunction tampon insertion, tight pants, bicycling, or horseback riding. How is Vulvodynia Diagnosed? Your provider will take a thorough medical history, ask Generalized Vulvodynia about your symptoms, and examine your vulva, va In this type, pain may be located in the vestibule or gina, and vaginal secretions carefully. The hallmark of in other areas of the vulva, such as the labia, clitoris, vulvodynia is sensitivity to touch, which your provider perineum, or inner thighs. The pain occurs spontane will test with a cotton-tipped swab. He or she will gently ously and may be constant, but it can be aggravated by apply pressure to various parts of your vulva and ask activities that put pressure on the area, such as pro how it feels. longed sitting or wearing fitted pants. Your provider may also examine the tissue through a magnifier or take a specimen for biopsy. Examination and cultures will help rule out bacterial or yeast infec tions or skin disorders. Blood tests will help determine

Pubis --+"7"--- whether hormone levels may playa role.

How is Vulvodynia Treated? Clitorls------+'Q Vestibule Because vulvodynia not only causes pain but also affects Urefhral mecrtus------1--1~~1~ your daily activities, your relationships, and your mental Labia majora ------t health, getting better may take a combination of self Labia minora ------\-___."\' help techniques, medical treatments, and psychological support. That's why you may need a multidisciplinary Perineum ----~ Introitus team of providers to help you, such as a gynecologist or Anus----~ vulvovaginal specialist, a dermatologist, a physical thera pist, and a sex or couples therapist or psychologist. ~ I No one treatment or combination works for everyone, Become Part of the ICA Community so be sure you have a give-and-take with your providers Annual membership donations to the Interstitial about what helps, what doesn't, and what you need. Cystitis Association ensure a steady stream of funding to fuel advocacy activities, expand research funding, Self-help techniques and raise awareness about IC, AVOID IRRITANTS Detergents, fabric softeners, toilet paper, certain under For an annual contribution of $45.00 or more ($75.00 wear fabrics, pads or tampons, and soaps or creams may outside of the US) you will become a part of the ICA be irritating, so avoid bleach, fabric softener, douches, community and receive an ICA Patient Education contraceptive creams or foams, and hot tubs or pools Kit with information about IC, treatment options, with chlorine. Try nonirritating, unscented detergent, research initiatives, and a restroom access card. paper products, and toiletries, and wear all-cotton un derwear. After urinating, use a squirt bottle or bidet to As an ICA member, you also receive: rinse with cool water. Dry gently. • Award-winning, quarterly magazine-ICA Update • News and research updates via the ICA eNews TAKE THE PRESSURE OFF • A 50% discount on materials in the ICA Store Wear loose-fitting pants or skirts, sit on a cutout cush ion, avoid cycling and horseback riding, use nonirritat • Discounted registration rates for ICA patient ing lubricants for sex, learn lovemaking techniques that forums and other events minimize irritation (see our brochure Sex and Ie). • Learn more at www.ichelp.org/LivingWithIC To join, send a check or money order (US funds only) made payable to ICA with this form to the address AVOID DIET TRIGGERS indicated below or join online at The items that provoke your bladder may also affect vul www.ichelp.orgjmembership. vodynia. Some also suggest a low-oxalate diet. Everyone is different, so use an elimination diet to find out which Donations to the ICA are tax-deductible to the fullest dietary items affect you. extent allowable by law. • Learn more at www.ichelp.org/Diet Keep the dialogue going SOOTHE YOUR BODY AND MIND Help others understand the need to find Apply heat or cold, whichever feels helpful at the time, with warm or cool baths or sitz baths, oatmeal baths, REAL answers about IC! warm or cool pads or packs on the vulva, or something that can be safely warmed or cooled and inserted in the Please make your donation in US funds only. vagina, such as certain adult recreational products or Please do not send cash. the finger of a medical glove filled with chilled or warm water. Relaxation, visualization, or meditation can also help.

ORAL MEDICATIONS Conquering IC. Pain relieving medications include tricyclic antidepres sants, serotonin-norepinephrine reuptake inhibitors Changing lives. (SNRls), anticonvulsants, and opioids. Antifungals for The ICA does not engage in the practice of medicine. It is yeast or antihistamines may be helpful. not a medical authority nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication. _I I Donation and Membership Form Your membership support is vital for keeping ICA programs and services running at full speed!

Title: [ ]Ms. [ ]Mrs. [ ]Mr. [ ]Dr. [ 1 _

Name: _

Address: _

City: _ State: Zip: _

Phone: [ ] Home [ ] Work [ ] Cell _

Email Address: _

I have been diagnosed with IC: [ ] Yes [1 No TOPICAL MEDICATIONS These may include topical lidocaine or hormones or I am a friend or relative of someone with IC: [ 1Yes [] No other medications that may need to be compounded into creams, gels, or suppositories, such as muscle relax I am a healthcare provider: [l Yes [1 No ants, anticonvulsants, mast cell stabilizers, capsaicin, and other medications.

I am enclosing a check for the amount indicated (please circle): INJECTIONS Injection of anesthetics or other medications beside $500 $250 $100 $75 $45 Other: $ _ nerves that serve the vulva or into pelvic muscle trigger points can be done in a doctor's office. Onabotulinum Visa MasterCard Discover American Express toxin A (Botox) injected into the vestibule, pelvic floor muscles, and other vulvar sites is beginning to be used Card Number: _ as a treatment. Interferon injections are sometimes used for vulvar vestibulitis. Signature: _ PHYSICAL THERAPY Pelvic floor therapy should be aimed at relaxing, not Expiration Date: _ strengthening, the pelvic floor muscles as well as releas ing muscle trigger points, connective tissue restrictions, 3 or 4-digit Security Code on Card: _ and nerves.

Today's date: _ INTERVENTIONAl THERAPY For more severe pain, spinal cord or peripheral nerve Make checks payable to ICA and send to: stimulators or pumps that release pain medications into the spinal canal can be implanted. Interstitial Cystitis Association P.O. Box 17522 SURGERY Baltimore, MD 21297-1522 Women with severe vulvar vestibulitis may be candi dates for vestibulectomy, a surgery that removes some or all of the vestibule. liJ_ I About the ICA. The Interstitial Cystitis Association (ICA) is the only Sex and Ie nonprofit health association dedicated to improving the quality of healthcare and lives of people living with interstitial cystitis (IC).

Conquering Ie. Changing Lives.

Donations help us to keep programs and services operating at peak strength so that every IC patient who needs help can have it-no matter where he or she may live, no matter how disabled they may be.

Your donation dollars also enable the ICA to continue to fund new IC research projects as well as to work closely with Congress to ensure ongoing federal funding of IC-specific research.

Helpful Links • www.ichelp.org/AboutIC • www.ichelp.org/lntimacy

The information provided by the ICA is designed to support, not replace, the relationship that exists between an individual and his/her healthcare provider.

Content of this brochure has been developed by ICA. Janssen Printing of this brochure is sponsored by Janssen J Pharmaceuticals. Inc.

April 2013 K02E13004 RBX Sex and Ie Treatment Is Tops For most IC patients, sexual intimacy is a challenge. The best way to ease pain with sex is to treat your IC ICA surveys and research estimate that from 60 to 90 symptoms-and the research shows it. If your IC symp percent of people with IC have difficulties with sex. For toms aren't under control, work with your healthcare many, IC has prevented them from having any sexual provider to find the IC treatments that work for you. intimacy. You may need a combination of treatments aimed at the bladder, the pelvic floor, and, for women, the vulvar It doesn't have to be that way. There are many ways area, since all three can be sources of pain with sex. to remain sexually active or resume your sex life, and Some local treatments can be especially helpful for pain there are treatments that can help. Most IC patients with sex, such as muscle relaxants in vaginal or rectal can reclaim physical intimacy when they, their part suppositories and topical numbing agents. ners, and their healthcare providers work together. Plan Ahead How Ie Affects Se, Take steps to feel your best at the time of your intimate Both women and men with IC may have pain during encounter. or after sex and even sometimes with arousal. The most common pain for women during sex is pain with Go for "pretreatment." And, plan on having intimacy thrusting, although they may also have pain with pen soon after the appointment with your healthcare etration, urethral or clitoral irritation, or orgasm. Simi provider. That way, you can get helpful "pretreatment," larly, men may have perineal, penile, or scrotal pain or such as: pain with ejaculation. Both men and women may have • bladder instillations IC flares after sex. It's thought that the pain can come • trigger point injections from pressure on a sensitive bladder, irritation of the • intravaginal or intrarectal muscle relaxants urethral area, or pelvic floor muscle problems. • oral pain medication (take them so their maximum effect is timed for your planned encounter) Let's Talk • topical medication, such as lidocaine gel, that help Touch can help ease chronic pain and strengthen the prevent pain during sex bond between you and your partner. So don't miss out on that part of life! Raise your concerns with your This is also a time to get any prescriptions you might healthcare provider. Be honest with your partner need for medications to use after sex. about the activities that are painful, but reassure your partner that you can have satisfying intimacy with Avoid flare triggers. Restrict foods and drinks that trig some adjustments and treatments. If it's difficult to ger flares. Also, it may be best to hold off on lovemaking talk, bring your partner to an appointment or ask for a until you have an empty bladder and stomach. referral to a therapist experienced in helping couples with intimacy and chronic pain. "Test drive" products and activities. Ask your health care provider if your bladder and pelvic floor are quiet enough to tolerate stimulation or penetration. Women can build and test their tolerance for penetration with vaginal dilators. Men and women can see if they can tolerate orgasm before trying with a partner. If you or your partner wants to try a new lubricant, test a small amount to be sure you can tolerate it before you use it during sex. Relax. Sexual activity is more comfortable when mus Become Part of the ICA Community cles-especially your pelvic floor muscles-are relaxed. Annual membership donations to the Interstitial Take a hot bath, stretch, do any helpful at-home physical Cystitis Association ensure a steady stream of funding therapy, meditate, or use other relaxation techniques. to fuel advocacy activities, expand research funding, and raise awareness about Ie. Numb up. Use lidocaine gel on the vulva or in the vagina or rectum. Partners can avoid numbing by using a condom. For an annual contribution of $45.00 or more ($75.00 Adapt Your Sexual Technique outside of the US) you will become a part of the ICA Make sex a whole mind-body experience. Explore community and receive an ICA Patient Education intimate touch that feels good and focus less on orgasm Kit with information about IC, treatment options, as the goal. research initiatives, and a restroom access card.

Try oral or manual stimulation. If orgasm is okay but As an ICA member, you also receive: penetration is not, manual or oral stimulation are op • Award-winning, quarterly magazine-ICA Update tions. Mutua I masturbation can be satisfying for both • News and research updates via the ICA eNews participants. • A 50% discount on materials in the ICA Store • Discounted registration rates for ICA patient Use "outercourse" techniques. When penetration is too uncomfortable for the partner with IC, couples can use forums and other events techniques that help simulate it, such as rubbing bodies together in a "spoon" position or thrusting the penis To join, send a check or money order (US funds only) between the thighs, buttocks, or breasts. made payable to ICA with this form to the address indicated below or join online at Go slowly. If you are a woman with IC and are resuming www.ichelp.orgjmembership. intercourse after a respite, start slowly. First, try pen etration only and no thrusting. If that causes no flare, Donations to the leA are tax-deductible to the fullest progress to gentle rocking and later to thrusting as you extent allowable by law. can tolerate it. Keep the dialogue going Use lubrication. Personal moisturizers and lubricants in Help others understand the need to find crease comfort and relieve friction during sexual activity. Use products that are not irritating. REAL answers about IC!

Limit intercourse intensity and duration. If women and Please make your donation in US funds only. men with IC can tolerate intercourse, they can do so for Please do not send cash. .- limited amounts of time. As a couple, decide to limit thrusting time to a maximum of 3 to 5 minutes to start. Then, increase the time gradually as tolerated.

Try alternative positions. Lying side-by-side may be Conquering Ie. most comfortable. For women with IC, being on top and leaning forward may also be a comfortable position, or Changing lives. having the partner stand while the other is lying down may be helpful. The ICA does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication. Donation and Membership Form Take Care of Yourself after Intimacy Heat if you need it. If muscles are spasming or sore, es Your membership support is vital for keeping ICA pecially after orgasm, relaxing with the heat of a warm programs and services running at full speed! bath, warm pack, or heating pad may be relaxing.

Cool off. On the other hand, some women or men find Title: [ ]Ms. [ ]Mrs. [ ]Mr. [ ]Dr. [ l _ using a cool pack on the vulva or perineum to be sooth ing. Ask your healthcare provider or physical therapist Name: _ about internal cooling, for example, with the finger of a surgical glove filled with chilled water or a chilled device Address: _ that's used for internal massage.

City: _ State: Zip: _ Ease the burn. Use lidocaine gel on the vulva, vagina, or penis to cool the burn from friction. Phone: [ ] Home [ ] Work [ ] Cell _ Medicate. Take your pain medicine, muscle relaxant, or anti-inflammatory or use your internal muscle relaxant Email Address: _ or pain medication.

I have been diagnosed with IC: [ ] Yes [] No Give your pelvic floor time to relax. After sex, some IC patients can't start a urine stream. This usually goes I am a friend or relative of someone with IC: [ ] Yes [] No away after a short while when the pelvic floor relaxes. A warm bath can help. I am a healthcare provider: [1 Yes [] No Follow-up with your healthcare provider. Let your healthcare team know what is working-and what is not I am enclosing a check for the amount indicated (please circle): working. Ask what you can do to decrease any pain or distress associated with sex. $500 $250 $100 $75 $45 Other: $ _

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Make checks payable to ICA and send to:

Interstitial Cystitis Association P.O. Box 17522 Baltimore, MD 21297-1522

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