Challenges Facing Men With IC/BPS Are Undeniable!
Spend a week in the IC Network offices and you might be surprised by the number of phone calls we receive from men struggling with IC symptoms. We’ve worked with physicians, military service members (command and enlisted), pilots (commercial and military), actors, stockbrokers, congressmen, space scientists, police officers, teachers, bus drivers and judges. Some have been in their teens while others are quite elderly. Most, though, are in their prime when symptoms strike.
It might surprise you to learn that almost as many men have IC as women according to the latest RAND Interstitial Cystitis Epidemiology (RICE) study. 1.8 to 4.2 million men have symptoms of IC making it far more prevalent than chronic prostatitis which is estimated at 2.1 million men in the USA.1 Yet, just like women, men often struggle to receive compassionate medical care, treatment and support.
The symptoms of IC can start gradually or suddenly. A man may notice that he can’t sleep through the night without getting up to use the restroom once or twice. Driving to school or work can become uncomfortable. Sitting through meetings or plane flights becomes a strain due to a constant sensation of urinary frequency or urgency. The hallmark symptom of IC, pain as the bladder fills with urine, becomes distracting and requires more frequent visits to the restroom. Some men simply ignore it under the mistak- en assumption that urinary symptoms develop with age while others may call their physician asking for antibiotics to treat what they think is a bladder or prostate infection.
It is pain associated with intimacy, particularly ejaculation, that causes alarm and distress. Some men describe severe urethral irritation and/or burning. Others report that pain is concentrated at the tip of the penis or the shaft of the penis. At this point, men often wonder if they have developed a sexually transmitted disease. Yet, embarrassment of their symptoms and/or fear of having a prostate or testicular examination can be a formidable obstacle to asking forhelp. I asked my 90 year old father why men are so reluctant to talk with their physicians and he said “A problem with the penis would never be discussed because we believe it will be temporary. I would have only gone to the doctor if I saw something that I knew was very wrong, like blood in my urine.” Thus, expecting a man of 21 years of age to reveal that they are having bladder, prostate or sexual problems and then to undergo a testicular or prostate examination may be unrealistic. Yet, it is the physician who can clarify the diagnosis and offer treatment that can dramatically improve symptoms.
Most men first visit their primary care providers who conduct routine urine and prostate examinations and it is at this point that many men find themselves misdiagnosed as chronic prostatitis patients. The “answer” is generally assumed to be a course of antibiotics which, over time, prove ineffective at resolving symptoms. After it becomes apparent that the symptoms are not improving and/or that “flares” continue to occur, primary care providers usually refer men to urologists. This is generally a step in the right direction. It is the urologist, with six years of additional urological training, who can better distinguish between bladder, prostate and a few other conditions which can cause urinary tract symptoms.
“…many clinicians think of IC as a ‘female illness’ and, therefore overlook the possibility of IC in their male patients.” —Robert Moldwin MD
Before the first appointment with a urologist, men should make a list of their symptoms, particularly anything unusual. How many trips to the rest- room are taken on average every day and night? Where is pain located? What does the pain feel like? Does anything trigger bladder symptoms or pain, such as sex or sitting down? Does anything relieve the pain? Are there any other medical conditions present, such as irritable bowel syndrome? The more clearly symptoms are discussed, the quicker a diagnosis may be made.
In The IC Survival Guide, Robert Moldwin MD shared some of the unique challenges that men face in diagnosis. He wrote “The male IC patient often has more difficulty receiving a diagnosis and ultimate treatment than the female IC patient. The reason is simple, many clinicians think of IC as a ‘female illness’ and, therefore overlook the possibility of IC in their male patients.” The symptoms of IC are virtually indistinguishable from prostate disor- ders thus requiring a comprehensive assessment that distinguishes between the two organs. And, as Dr. Moldwin offered, “To make a diagnosis of IC even more problematic, it’s possible to have two problems at the same time, such as IC and a prostate that’s obstructing the flow of urine.”2
The American Urology Association (AUA) urges clinicians to perform a thorough history and physical exami- nation. They suggest that symptoms must be present for six weeks in the absence of infection. A physical examination of the pelvis should be performed to assess the pelvic floor mus- culature. A variety of tests can also be performed (cystoscopy, urodynamics, hydrodistention) to help clarify the diagnosis if needed.3
Several conditions must be ruled out, including:
Prostate enlargement (aka benign prostatic hyperplasia or BPH) naturally occurs in men as they age, the result of dihydrotestosterone which