We usually come across Shakespeare’s “What is in a name?” quote when people are trying to explain that names don't really matter; that all you need to know is what something is, not what it's named.
As it turns out, naming problems has had a significant effect on male pelvic pain and how it is treated.
The most common diagnosis given to men when they have bladder problems, non-cancerous prostate problems, and penile/scrotal or rectal pain is “chronic prostatitis”.
Historically, anything with an “itis” on the end means that something is inflamed or infected.
As it turns out, in the large majority of cases, this is simply not true.
The prostate is usually not even involved, let alone inflamed or infected.
Dr. Jeanette Potts, a leading American urologist states that accurately naming health problems is essential for describing the issue at hand. Proper names help to guide both treatment and research.
Potts states that “the outdated and incorrect use of bladder/prostate-based and inflammation-based names to describe, classify and study chronic prostatitis in men has led to misunderstanding, misdiagnosis, mistreatment and misappropriation of research funding.”
“The prostate has been framed” has become Dr. Potts’ mantra.
When men present to their family physicians with urinary symptoms such as burning, urinary frequency/urgency, penile, scrotal or rectal pain, the most appropriate first step is to test the urine or prostate fluid for infection.
Even when the majority of cultures come back negative, most men are still placed on antibiotics simply because they have the symptoms of a bladder or prostate infection.
Imagine applying this same flawed approach to a really bad headache.
Doctors would consider ordering a MRI to rule out a brain tumor if it’s the first or worst headache that you have ever had.
However, if the MRI results were negative, it would be totally inappropriate to recommend radiation treatment to the area of the head that hurts.
The same idea holds true for treating an infection if there isn’t a positive urine or prostate culture when treating men with pelvic pain.
Unfortunately, this still happens all too often in Canada and around the world. Organizations like the European Society for the Study of Interstitial Cystitis(IC)/Bladder Pain Syndrome (ESSIC) and the newly published Canadian Urology Guidelines for the Diagnosis and Treatment for IC and Bladder Pain Syndrome (2016) are trying to set the record straight based on accurate research and new information.
Dr. Christopher Payne and Dr. Jeanette Potts are a husband/wife urology team that treat both male and female bladder-based pelvic pain in California and are involved in the world-leading ESSIC group. They have proposed that 50 per cent of men at some point in their life will experience urologically-based pelvic pain in the absence of a bladder or prostate infection.
As it turns out, there are five diagnostic groupings (phenotypes) that need to be considered when men present their doctor with this type of problem.
If you are one of these men, your first job is to find a doctor who has high emotional intelligence. When treating chronic pain, your doctor will need a high level of curiosity, empathy and creativity.
Ask your doctor to consider these five possibilities as the source of your problems:
(Hint: there may be more than one reason for your pain, but one area is often dominant. Usually start by treating the dominant phenotype.)
Hunner’s Lesions: A small group of patients may have deep, inflammatory lesions on their bladder wall. This is more common in women than men, but men may need to have a cystoscopy to rule this out. The presence of Hunner’s lesions will rule in Interstitial Cystitis and rule out Bladder Pain Syndrome.
Bladder Pain Syndrome: Bladder wall phenotype. These patients often start with a urinary tract infection or prostate infection (which means that a positive culture from a urinary test came back and was treated). Once the infection was treated (and further tests show cultures to be negative) the symptoms might persist. Frequency and urgency of needing to urinate can occur during the night and day. Pain is the motivation for emptying your bladder when you have this phenotype, and patients only experience temporary relief when they do. These men often connect increased pain to the type of food that they eat. Often these men will find that their pain decreases when an anesthetic, such as lidocaine, is put into the bladder.
Bladder Pain Syndrome: Pelvic Floor Muscle Pain Phenotype. These patients may have a history of sports or orthopaedic injuries (including low back pain and hip pain, which may show up as pelvic floor tension). Upon examination, there is tenderness when palpating the pelvic floor, abdomen, back and hips. These men will not feel sensitive to the foods that they eat, and many get relief at night when they are sleeping. These men also often relate tension and stress as aggravating factors, since the pelvic floor muscles are very sensitive and reactive to stress. Bladder installation with lidocaine generally does not help this group. This group, which forms the majority of pelvic pain sufferers, will do extremely well with physiotherapy, including internal work on the pelvic floor muscles.|
Bladder Pain Syndrome: Pudendal Neuralgia Phenotype. When the tension in the pelvic floor group above has been around long enough to start compressing some of the nerves in the pelvic floor, pudendal nerve pain can happen. This Syndrome causes extreme pain with sitting, particularly in the perineum and rectum. Most of the time, these symptoms will fully resolve with physiotherapy intervention, relaxing the muscles and mobilizing the tension along the nerve pathways.
Multiple Pain Disorders/Functional Pain Syndromes: Central sensitization is a hallmark feature of this phenotype. Anxiety, depression, catastrophization and fear avoidance are often components that need to be treated. Men in this category often experience multiple pain syndromes including Irritable Bowel Syndrome and Multiple Chemical Sensitivities, for example. A biopsychosocial approach is required. There may be multiple phenotypes involved in this group of men, and both the physical findings and the psychosocial factors need to be treated in order to achieve a full resolution.
We have come a long way in understanding why past therapies were ineffective and how current, targeted therapies have the potential for achieving complete symptom remission, aka a “cure”.
Men with chronic pelvic pain or chronic prostatitis often feel hopeless, but they shouldn’t. We know so much more today about how they can be treated and work towards healing.
The process begins with an accurate diagnosis.
Targeted physiotherapy plays a key role in the treatment of these problems. Physiotherapy can help men get back to a normal and productive life again.
Finding a supportive, knowledgeable and empathetic health care team is the first step.
Potts J. Male Pelvic Pain: Beyond Urology and Chronic Prostatitis. CRR. 2016;12(1):27-39.
Cox A, Golda N, Nadeau G, Nickel J, Carr L, Corcos J et al. CUA guideline: Diagnosis and treatment of interstitial cystitis/ bladder pain syndrome. Canadian Urological Association Journal. 2016;10(5-6):136.
Payne C. A New Approach to Urologic Chronic Pelvic Pain Syndromes: Applying Oncologic Principles to “Benign” Conditions. Current Bladder Dysfunction Reports. 2015;10(1):81-86.