muscle knot) in the pelvic floor can often cause much pelvic pain. Pelvic floor dysfunction can contribute to sexual pain, constipation, urinary hesitancy, and the feeling of incomplete bladder emptying. Your doctor will palpate your perineal area and do a rectal exam.

In addition to a urologist, you may need a physical thera-pist experienced in treating men with pelvic pain, a pain management doctor, and a therapist who specializes in male psychology or chronic disease.

TreatmentsAlthough some experts consider CP/CPPS to be different aspects of the same condition in men, men with a diag-nosis of just CP/CPPS may not be offered the IC-specific treatments that can help. We list many IC treatments here, and you can learn more about them by reading about the American Urological Association’s clinical guidelines (www.ichelp.org/treatmentguidelines).

ORAL MEDICINESThe only oral medication specifically approved by the FDA to treat IC is pentosan polysulfate (Elmiron®). In clinical trials, the drug improved symptoms in 30 percent of patients treated. Prescription multi-ingredient prod-ucts (eg, Urelle®, Uribel®) are also available to relieve urinary pain and lessen the urgency/frequency of having to urinate. Over-the-counter (OTC) products such as aspirin, ibuprofen, and urinary tract pain relievers (eg, AZO®) can help to alleviate mild pain.

Other oral medications, though not approved specifically by the FDA for the treatment of IC, have been useful for treating the condition. These include acid-blockers like cimetidine (Tagamet®) and the antihistamine hydroxy-zine (eg, Atarax®, Vistaril®). Many IC patients benefit from taking tricyclic antidepressants such as amitripty-line, or antiseizure, or nerve pain drugs. All drugs – even those sold over the counter – have side effects. Patients should always consult a doctor before using any drug.

BLADDER INSTILLATIONSBladder instillations are controversial for men with IC. Some doctors don’t recommend this approach because the catheter may initially cause more pain. However, other IC experts report that men with IC find intravesical therapy helpful. PHYSICAL THERAPYPhysical therapy helps to ease the muscular response

in the pelvic floor. Although it might be difficult to think about going through this therapy because pelvic floor muscle massage is done through the rectum, it can offer tremendous relief. Because the pelvic floor muscles are the culprit in pain with ejaculation, physical therapy may help you get your sex life back.

Physical therapy also includes learning how to move and exercise so you don’t exacerbate your symptoms, releas-ing muscle trigger points and tissue restrictions external-ly and internally, using techniques that keep the muscles relaxed, and learning to treat yourself so you can do that in the comfort and privacy of your own home. And it re-ally helps to involve your spouse or significant other who can help massage muscles and trigger points you cannot reach yourself.

BIGGER TREATMENT GUNSThe therapies above are considered first- and second-line treatments in the AUA’s clinical guidelines. Third-line treatments include cystoscopy and hydrodisten-tion under anesthesia, treating Hunner’s lesions in the bladder with an electrode or laser or injecting them with a steroid. Neurostimulation is considered a fourth-line treatment. Low doses of the immunosuppressant drug cyclosporine and onabotulinum toxin A (Botox) injec-tions into the bladder are considered fifth-line treat-ments. The last resort is major surgery to enlarge or remove the bladder.

PSYCHOTHERAPYThe effect of IC on men’s psyche is enormous. Although the best psychotherapy for pelvic pain is to reduce or stop the pain with good treatment, working with a therapist who specializes in male psychology or chronic disease can help you get back on track.

SELF CAREMany men with IC find that diet, exercise and physical techniques, and stress reduction.

Limit Your Diet TriggersLook at your diet and make those modifications for what triggers IC. The most common ones are coffee or tea, soda, alcoholic beverages, citrus and cranberry fruits and juices, artificial sweeteners, hot pepper and spicy foods, and tomato and tomato products. But it’s not the same for everybody. You have to figure it out over time.

Real Men Get ICMen do get interstitial cystitis (IC). Because some doc-tors may not recognize that and because men tend to put off going to the doctor until they can’t tough it out anymore, you may have a rougher time than you have to getting the right diagnosis and the treatment that can put your life back on track.

IC can affect aspects of life that are core to men’s roles in our society, such as being a good provider, being physi-cally capable, being sexually active, and not needing help. Living with pain in places that may not be consid-ered socially acceptable to talk about and having what some people think of as a “woman’s disease” can be isolating.

But there are healthcare professionals who do recog-nize that men get IC. This brochure can help you get the right diagnosis, put together your healthcare team, and outline your treatment options.

Getting the Right DiagnosisToday, IC is diagnosed based on symptoms, so your doc-tor needs to be familiar with both chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) and IC in men and to ask you about all your symptoms. Many symp-toms are compatible with either diagnosis. Men may have one or the other or both. Typically, men with CP/CPPS have pain in the perineum and pain with ejacula-tion. They may also have some urinary symptoms. Men with IC may have those symptoms, too, but also have prominent urinary symptoms, including:

• Pain associated with the bladder, especially with filling and discomfort that’s relieved for a short time after emptying your bladder.

• Urinary frequency, nighttime urination, urinary urgency, and pain just above the pubic area (over your bladder)

Some IC experts believe men with IC tend to have more severe symptoms than women, with a higher preva-lence of “classic” IC (with Hunner’s lesions) and pinpoint bleeding from the bladder wall (glomerulations). Men are also more likely to have urinary symptoms caused by obstruction at the outlet of the bladder.

Don’t be surprised if you also have problems with the pelvic floor, the muscles that support and surround the bladder and pelvic organs. A spasm or trigger point (a

Become Part of the ICA Community Annual membership donations to the Interstitial Cystitis Association ensure a steady stream of funding to fuel advocacy activities, expand research funding, and raise awareness about IC.

For an annual contribution of $45.00 or more ($75.00 outside of the US) you will become a part of the ICA community and receive an ICA Patient Education Kit with information about IC, treatment options, research initiatives, and a restroom access card. As an ICA member, you also receive:

• Award-winning, quarterly magazine-ICA Update• News and research updates via the ICA eNews• A 50% discount on materials in the ICA Store• Discounted registration rates for ICA patient

forums and other events

To join, send a check or money order (US funds only) made payable to ICA with this form to the address indicated below or join online at www.ichelp.org/membership.

Donations to the ICA are tax-deductible to the fullest extent allowable by law.

Keep the dialogue going

Help others understand the need to find REAL answers about IC!

Please make your donation in US funds only.Please do not send cash.

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.

Join the ICAThe ICA serves as a support an information hub, keeping you up-to-date on the latest treatment options and con-necting you with others who understand the challenges of living with IC.

About the ICAThe 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 IC. Changing Lives.

The ICA provides advocacy, research funding, and education to ensure early diagnosis and optimal care with dignity for people affected by IC. 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/Men • www.ichelp.org/AboutIC• www.ichelp.org/Intimacy

The information provided by the ICA is designed to support,

not replace, the relationship that exists between an individual and his/her healthcare provider.

Copyright © 2013 Interstitial Cystitis Association (ICA) Material may not be reproduced in whole or in part without special

written permission.

April 2013 RBM

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Get Off Your . . . Sitting can increase symptoms of pain and urgency. Take the pressure off the perineum and genital area by sitting on a cut-out cushion. You can make one yourself by cutting out the center of a foam kneeling pad, leaving a U shape. An alternative is to take a towel and roll it up about six inches, and then place the rolled towel be-tween the crease of your knee and your sit bones so you lift that sensitive part of your body off the sitting surface. Use a rolled towel in the small of your back, too.

Exercise Right Aerobic exercise endorphins may help you knock down pain and keep depression at bay. Just keep the impact low. Stretching can help screaming muscles relax. For muscle-building exercise, such as crunches, learn how to engage your core so you don’t put too much pressure on your bladder and pelvic area. It helps to get instruc-tion on this from a physical therapist or exercise special-ist, but here’s one tip for engaging your core: instead of bulging, pull your belly in and up, the way you might when you zip up your pants.

If you like to lift, be cautious against using too much weight. If you try to lift more weight than your body can handle, your pelvic floor and superficial abdominal muscles have to work too hard to stabilize your trunk. So, easy on the pounds. (Some pelvic pain doctors tell patients to stop lifting weights altogether.) Apply Heat or ColdHeat can relax muscles and cold can calm down inflam-mation and pain. Find out what works best for you by trying out warm baths, hot or cool packs over your blad-der or on the perineum, or cooling or warming tissues through the rectum using a massage tool that can be safely warmed or cooled. Relax Your Mind and MusclesStress reduction, relaxation techniques, massage, medi-tation, and music can relax your whole body and help ease pain. Go to a Support GroupCheck out the ICA website for a group in your area. You may be the only man at the group, but you’ll also learn a lot. Put all your fears and reservations aside because you never know who is going to help you.

Real Men Get IC

Conquering ICChanging Lives

InterstitialCystitis

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