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.

men-goticaskmeIt 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.

Diagnostic Challenges

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 exam ination 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

Prostate enlargement (aka benign prostatic hyperplasia or BPH) naturally occurs in men as they age, the result of dihydrotestosterone which is produced by the testicles and stimulates prostate growth. If the prostate grows inwards it will eventually begin to block the flow of urine. He will have difficulty start- ing urination and poor urine flow. He may feel the need to strain and/or have a sensation that his bladder is still full. Men may find themselves using the restroom more frequently, yet only able to release small amounts of urine.

Because the flow of urine is restricted, the muscle in the bladder often pushes with more force. The downside? The bladder muscle becomes thicker, stronger and less elastic. The bladder muscles can contract at random times, causing sudden urgency and, in some cases, leakage. BPH can also lead to an inability to void (acute urinary retention) that will require immediate medical intervention and/or emergency care. Increased bladder infections and the develop- ment of bladder stones can also occur. When present, BPH should be treated at the same time that IC is treated. Oral medications (i.e. alpha- blockers) may be helpful. Surgical intervention (TUNA, TURP) may also be considered.

Seminal Vesiculitis

Located above the prostate gland, the seminal vesicles produce the majority of fluid released during ejaculation. Seminal fluid drains into the vas deferens where it is mixed with sperm. When the seminal vesicles become infected or inflamed they trig- ger symptoms very similar to IC including frequency, pain with or after ejaculation, pain with urination, testicular pain, perineal pain, low back pain, a sensation of bladder fullness and/or blood in the urine or semen.

The first indicator of vesiculitis is tenderness with touch. Physicians may also perform an ultrasound, CAT scan or MRI to identify enlarged vesicles as well as a culture of seminal fluid to identify the presence of bacteria. A number of treatment options are avail- able.

Prostate and Bladder Cancer

Advanced prostate cancer can trig- ger symptoms similar to IC. Prostate cancer is easy to screen for with the PSA blood test and a simple prostate palpation. Bladder cancer has been linked to both tobacco smoking (cigarettes, cigars and pipes) and exposure to various carcinogenic chemicals. Chemotherapy and radiation treat- ment have also been implicated.

Visible or microscopic blood in the urine is often the first sign. Symptoms can include pain with urination, a sensation of incomplete emptying, urinary frequency and urgency. A urine cytology test can be used to identify various bladder cancers. A biopsy of a possible lesion may also be obtained during a bladder hydrodistention. Early stages of bladder cancer are usually very responsive to treatment.

Chronic Prostatitis/Chronic Pelvic Pain Syndrome

There are four distinct categories for prostatitis, only one of which correlates somewhat strongly with IC.

Category 1 – Acute Bacterial Prostatitis is a severe infection of the prostate gland with symptoms of fever, chills, urinary frequency, urgency, low back pain and prostate tenderness during a rectal exam. Bacteria and white blood cells are identified via urinalysis. Antibiotics are used to treat the infec- tion. If the prostate is swollen and is blocking urine flow, urgent care and hospitalization may be required.

Category 2 – Men with Chronic Bacterial Prostatitis suffer with recur- rent, persistent bladder infections which originate from an infected prostate gland. Considered a rare dis- ease, it is identified via culturing of prostate fluid as well as urinalysis. Treatment requires a prolonged course of antibiotics, preferably ones the penetrate the prostate well such as fluoro- quinolones.

Category 3Male Chronic Pelvic Pain Syndrome (MCPPS) – The vast majority of men (85%) diagnosed with prostatitis fit into this category, known as male chronic pelvic pain syndrome. They experience all of the symptoms 1 and 2 (pelvic pain, testicular pain, penile pain and pain with ejaculation) but no infection is found in urine or prostate fluid.

Category 4Asymptomatic Inflammatory Prostatitis is the diagnosis when inflammation is found in the prostate yet the man has no symptoms. Usually, this is found during another routine medical procedure such as a biopsy to rule out prostate cancer. No treatment is usually offered in this case.

Pelvic Floor Dysfunction (PFD)

The muscles of the pelvic floor region are a well known source of uri nary, bowel and sexual discomfort. Weak muscle tone can trigger inconti-nence and/or a decreased ability to become aroused, orgasm and/or ejaculate. Tight, hypertonic muscles can cause urinary and/or bowel frequency, urgency, retention, sexual dysfunction and/or pain. IC pain, often described as ground glass or razor