It is always heartbreaking to hear stories of men who have been seeking medical help but have been unable to find treatment. If a patient is suffering from pain, discomfort, and loss of bodily function, they find it extremely disheartening to be told there is nothing wrong with them by their doctor. By the time these men are sitting in front of me, they are often desperate and depressed.
According to one study, Pelvic floor dysfunction, also known as chronic pelvic pain syndrome (CPPS), is one of the most misdiagnosed and undertreated conditions in men’s health. This study found that it has a worldwide prevalence of up to one in six men “and is the most common urologic disease in men below 50 years old.” The Prostatitis Foundation says that 50% of all men will have prostatitis at some point in their lives. I find the most distressing statistic is that “Symptoms can be present on average for 87 months before diagnosis.” (Smith, 2016). 87 months is over 7 years of suffering before a man finds out what is wrong with him. No wonder these men are desperate!
This condition is often diagnosed as “Prostatitis.” This is a bit of a giant catchall term that covers a multitude of symptoms. True prostatitis is a bacterial infection of the prostate. According to the study above, fewer than 10% of the cases are true prostatitis. The diagnosis is often changed to “chronic prostatitis” or even “non-bacterial chronic prostatitis.” Let me be clear, I am not being critical of doctors. I recently talked to a young doctor friend who had recently finished his residency, and I asked him about his training in Chronic Pelvic Pain Syndrome. He said he had never even heard of such a condition; this topic is not discussed in medical training. Since doctors are not learning about this condition in medical school, it is up to us to spread the word so that men can find the help they deserve.
Why is it so hard to diagnose? Well the list of symptoms is mind-boggling. Every man who has chronic pelvic pain syndrome can have entirely different symptoms. Here is a list of what I ask our patients:
- Pain in the penis (esp. the tip), shaft, urethra, scrotum, after sex, with ejaculation?
- Is Penis retracting, getting smaller and harder, feeling dead, weaker erections, ED?
- Pain in perineum (taint), bladder, under your belt buckle, lower back, groin, hips?
- Do you have reduced sensation, reduced orgasm, reduced ejaculate?
- Urinary urgency, frequency, painful urination, stop/start, thin/weak stream, dribbling?
- Constipation, diarrhea, incomplete voiding, frequent voiding, messier?
- Is it worse lying, sitting, standing, time of day, physical activity, stress?