Do Men Get IC/PBS?
The answer, of course, is yes. Several research studies have found that roughly 10% of diagnosed IC patients are men, however that figure is often in dispute. In a speech on Men with IC at the 1997 ICA Ninth National Meeting, Dr. Robert Evans (Tannenbaum Urological Association, Greensboro, NC USA) stated his belief that the majority of men diagnosed with chronic prostatitis may, in fact, be misdiagnosed and mistreated IC patients. "If those patients who were told they have prostatitis and didn't respond to antibiotics or told they have prostatodynia (prostate pain) were studied, the vast majority of them... would have IC." At the same meeting, Dr. Evans revealed the results of a small study he did which has helped reveal a mans experience with IC.
- Men have as much trouble obtaining a proper diagnosis as women, waiting an average of 4.3 years before diagnosis.
- Men have symptoms on average of 3.6 years before diagnosis.
- The average age of onset with men is 48 years old.
- 76% percent of patients were diagnosed with prostatitis, 2% with urethral strictures, 12% with non-specific urethritis, 60% with an enlarged prostate.
- 44% had a transurethreal prostatectomy with no improvement of symptoms.
- 100% were told, at some point in time, that they had a prostate or bladder infection.
Men with IC struggle with a wide variety of symptoms, including: urinary frequency, nocturia (frequency at night) urgency, pressure and/or pain which can occur in the bladder, scrotum, perineum and penis. Men may also struggle with a reduced urinary stream or urinary retention.
The diagnosis of men with interstitial cystitis is very similar to women with the exception of eliminating potential prostate conditions that can mimic the symptoms of IC. Thus, in addition to the urine testing, men typically have a prostate exam and may have prostate secretions cultured. They may have various tests including urodynamics, KCL test, cystoscopy, hydrodistention with cystoscopy and, if needed, a bladder biopsy.
A pelvic floor assessment is also performed to rule out pelvic floor dysfunction and/or painful trigger points. Like women, men with interstitial cystitis can experience tense, painful muscles in the pelvis which can create a variety of bladder symptoms. This simple test can be performed by a urologist or trained physical therapist.
The standard treatments include various oral medications, bladder instillations (i.e. rescue instillations), OTC supplements, physical therapy and, for more severe cases, neuromodulation. Surgery is rarely performed for IC and is considered a last resort.
The First Line Of Defense
Here at the IC Network, we've worked with a wide variety of men with IC, including stock brokers, congressmen, secret service officers, police officers, doctors, nurses, judges, attorneys, commercial pilots, broadway stars, hollywood actors, teachers, construction workers, bus drivers and more. Thus, it's very clear that IC is not just a white or blue collar condition. It does affect men of all incomes, professions and cultures. But, what you may find most interesting are the many active duty military (all branches) who struggle with symptoms. We have to wonder why. One contributing factor could be diet. Anyone who has spent time with military staff, particularly in meetings, will notice that, frequently, the only beverages offered are coffees and coca colas. Could that high acid load be irritating their bladders and, perhaps, leading to more severe symptoms over time? We think it could.
How do foods irritate the bladder??
Urine is composed of water and various toxins and substances that our body is trying to eliminate. It is not unusual for a healthy bladder to become irritated by urine, such as in patients going through chemotherapy. However, a far more common sign of bladder irritation is the increased frequency that coffee and tea drinkers often complain of. Even artificial sugars, such as Nutrasweet, are known for irritating even the healthiest of bladders which explains why so many diet soda drinkers often struggle with frequency. But, when you have an injured or wounded bladder, urine can reach into the deeper into the bladder wall where it can directly stimulate nerves, stimulate mast cells to release histamine and create profound irritation.
What foods are notorious for causing problems??
Foods high in acid (such as orange or cranberry juice) create tremendous irritation in much the same way that acid poured on a wound on your hand would feel. It hurts! Foods that stimulate nerves, such as caffeine, are notorious for triggering the already sensitized nerves in the bladder. Thus, if you're struggling with frequency or pain, this means that your bladder nerves are involved. It's foolish to irritate the nerves to trigger yet more frequency. Foods high in histamines, such as chocolate, can trigger an allergy like reaction. Some, but not all, patients may struggle with foods high in sodium or potassium. Patients may also have individual and often unpredictable reactions to various foods.
The Top Five Forbidden Foods
The top five forbidden foods are those foods that are NOTORIOUS for causing IC flares. We suggest you eliminate these immediately from your diet. Even one small serving a day can trigger a night of sleeplessness and pain. Please note that this is not for the rest of your life. It will be, however, needed for several months to give your bladder time to recover.
Cheating with these foods is risky. In our experience, the patients who continue to consume these foods, especially that one cup of coffee a day (decaf or regular), are those who suffer the most with pain and discomfort. Furthermore, we believe that no therapy can counteract the damage and irritation created by a daily "acid" wash from these foods. If you want your bladder to calm down, your first step is to eliminate these risk foods.
- Coffees - Regular & Decaf should be avoided!
- Teas - Regular, Decaf and Green Tea!
- Sodas - Regular and Diet
- Fruit Juices, especially cranberry and orange!
- Multivitamins that contain Vitamin C and/or B6
What can you drink, particularly in meetings?? If you're symptoms are active, stick with hot water and/or sugar (no lemon please) or stop at starbucks and get a peppermint tea or steamed milk with your favorite flavoring (i.e. vanilla, gingerbread, pumpkin spice). We also recommend chamomile herbal tea because they are well known to soothe the smooth muscle of the bowel as well as reduce painful spasms.
The standard treatments include various oral medications, bladder instillations (i.e. rescue instillations), OTC supplements, physical therapy and, for more severe cases, neuromodulation. Surgery is rarely performed for IC and is considered a last resort. Men struggling with pelvic floor dysfunction should also consider obtaining physical therapy to help reduce tension and/or restore normal muscle function. (See our more extensive treatment discussions here).
Interestingly, a number of OTC supplements have been created specifically for men with lower urinary tract issues, some with solid esearch studies that show that they can help reduce the symptoms of IC and prostatitis. In a study released in late 2006, Cystoprotek was found to reduce the symptoms of IC patients who had failed to respond to other therapies. Other products include Algonot, Prostaprotek, CystaQ, ProstaQ, Bladder Q or the Desert Harvest Aloe supplements. (Most available in the ICN Mail Order Division) We've featured the research teams for most of these products in our ICN Guest Lecture series where you can read more about why these products were developed and what they do.
Work and Career
The jarring sensation that occurs with driving can irritate the bladder and trigger frequency and/or pain. If you commute to work, we strongly suggest that you use a car with a very smooth suspension. The bouncier the suspension, the more challenging the symptoms. In our experience, the larger American cars (i.e. Buick Rendezvous) are the most comfortable.
Seats should also be comfortable. When ICN President Jill Osborne spent a year testing cars, she absolutely loved the smooth ride of the Volvo's but the car seats were hard leather with little padding and pain occurred just a few minutes into the test drive. Leather seats found in many foreign cars (i.e. Toyotas, Hondas, etc.) tend to be harder and more uncomfortable. Fabric seats seem more soothing to the bladder. If you're riding a bus or train, you might find our Pelvic Friendly Chair Cushion very helpful.
Plan for emergencies. If you're worried about getting stuck on the freeway there are many products that you can use if you need "to go." Afterall, small aircraft pilots use them... so why not you! TravelJohns offers portable urinals for both men and women that have a chemical added which solidifies urine so that it can not leak out of the bag. It is neat, tidy, disposable in any trashcan and very useful in a crisis!
Under no circumstance should an IC patient drive while taking strong pain medications. You risk not only your health, but those of other drivers by driving impaired. If pain is an issue, consider using a TENS unit in your car until you get home. You can even try gently slapping your thigh which, like a TENS unit, helps distract the brain from the pain. A heating pad can also be very helpful in taking the edge off. BodiHeat adhesive pads are perfect for driving because they deliver constant steady heat and can be worn in the car, at work and on planes. Just stick to your tee shirt or jockeys and go!
It's All About The Chair
If you're sitting all day, take note of your chair. Office chairs should be fairly cushy so as not to put undue pressure on the muscles in your buttocks. If you can't tolerate anything touching your crotch area, consider purchasing the Pelvic Friendly Chair Cushion. It is a square cushion that has a groove down the middle, thus removing all pressure in that area. Please note that circular "donut" cushions rarely work because they put far too much unnatural pressure on the pelvic floor muscles.
Meetings & Traveling
Meetings present a special challenge, particularly if you're not wanting others to know of your IC. If you need to be in meetings for a long period of time, don't start your day with coffees, OJ or sodas, which can increase your need to urinate dramatically. Some medications can help reduce that superficial bladder irritation, like pyridium. Other medications may help reduce that urgency sensation, including Detrol or Ditropan. Ultimately, though, if you've gotta go, just go. Don't hold your urine for long periods of time when you're in pain because that urine is irritating your bladder and creating yet more irritation.
For travellers, the first item in your arsenal should be a restroom access card so that you can request assistance, particularly when flying. Some patients carry medalert cards that state 'Interstitial cystitis: Restroom Access Required." Request seats nearest the restroom and when boarding the plane, introduce yourself to the flight attendant and inform them that you do have bladder problem and may need to use the restroom frequently. Flying business or first class is ideal because they have their own restrooms and often more accomodating flight attendants. Click here to read our ICN Self Help Tip: Flying The Friendly Skies
The most important book for a newly diagnosed patient, the IC Survival Guide was written by one of the most respected clinicians in the USA, Robert Moldwin MD. It covers diagnosis, treatments and pain care. Most of all, it will help you credibility test proposed treatments with your physician. It's a must read! ($13.99) Buy Now!
A Headache in the Pelvis, 4th edition is a must read for men and women struggling with pelvic pain because it explains how muscle, trigger points, tension and, yes, anxiety can create serious pelvic pain. More importantly, it gives you a reliable method, proven by research studies, to treat it and, with luck, heal it! ($29.95) Buy Now!
The ICN Special Report on Diet is a reference guide to the IC diet, explaining why diet is important and providing an extensive list of foods. 24 pages long. Available in print ($10) and by e-mail $8) Buy Now! (The Email version of this item is available under "ICN Publications" in our mail order center.)
A note from ICN Founder Jill Osborne - When I began my first support group here in Northern California, it was filled with men who had IC... including four pharmacists. I had no choice but to take a closer look and quickly realized that men had very unique support needs. They often suffer in silence and, worse, don't share their struggles with others who can help. We want to change that. If you have a story share, you can do it today in our ICN Support Forum where you'll find hundreds of men sharing tips, asking questions and more! You are not alone!