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Overcoming my Chronic Pelvic Pain Syndrome: An Interview with a survivor (2 of 2)

Dad Son

Today we pick up on Jennafer Vande Vegte's interview with her patient, "Ben", about his experience overcoming chronic pelvic pain syndrome. Ben's quality of life improved so much that he has returned to school in order to become a PTA, with a focus on pelvic rehabilitation!

 

Describe your physical therapy experience. Talk about your recovery process. Include the physical, mental and emotional components. For my initial visit, my therapist questioned and assessed my pain, then explained pelvic floor dysfunction. She made sure I understood that the evaluation and treatment process involved internal rectal work. After developing the condition and months of seeing doctors who didn’t listen, finally I found a physical therapist who was actually listening to me and determined to get to the bottom of what was going on. I could tell she already knew much about the mechanics (if not the exact cause) because she had treated other patients with the same issues. I immediately sensed a difference from any other health care professional in attitude, compassion, and knowledge. Of course, how do you know for sure? Well, you don’t. But after repeated visits and excellent results, you experience the difference. An important realization while going to Physical Therapy is learning to see the mind-body connection. In the back of my mind I sensed that my pain was being perpetuated by emotional trauma. This is not an intuitive way of thinking when you are in constant high-level, 5-alarm pain. I was obsessed with finding the cause of my pain, but chronic pain is extremely elusive and complicated.

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Overcoming my Chronic Pelvic Pain Syndrome: Interview with a survivor (1 of 2)


Recently my coworkers and I celebrated a male patient’s recovery from a long and difficult journey with persistent pelvic pain.  “Ben’s” case had many elements of what we normally see in our patients: chronic muscle holding, restricted fascia, allodynia, hyperalgesia, castrophizing and kenisiophobia.  Ben was also very upfront about how his pain impacted his emotional well-being and vice versa.  His healing process taught us a lot about the biopsychosocial aspects of treating persistent pain.  Along his journey we dreamed of the day we could write a blog together and help other people learn from the experience. Ben also decided to make a career change entering school to become a PTA so that he could help others in pain. Here is my interview with this brave patient.

1.   Tell us about how your pain started My pain started with urethral burning.  Tests showed there was no infection.  In retrospect, the cause of pain could have been the beginning of tension on pudendal nerve branches from extreme stress and a series of traumatic incidents that happened within weeks of each other.  They included a very embarrassing and stressful summer of unemployment, a father who had heart failure and triple bypass in the fall, and a girlfriend who gave me an ultimatum when I was too stressed to get an erection.

2.   What medical tests or treatments were done?When the pain started, I first thought it was a basic urinary tract infection.  I went to the med center and was prescribed an antibiotic.  After 3 days without change, I went back in and although they still found no sign of infection, they prescribed an additional antibiotic.  The urethral pain never stopped and seemed to get worse.  Following a series of visits to numerous doctors and urologists, I repeated tests on the prostate fluid, blood tests, and more bacterial tests.  No infection.  My PCP also made a fairly large overture of testing me repeatedly for HIV.  For five months I had a blood test every month, all came back negative.  This was damaging to my psyche. For those months I was terrified my life was over.  In retrospect, that doctor was out of line, I changed doctors.

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Male Phimosis: Not a Fraction of Retraction


As I read about male phimosis, I thought about a shirt that just won’t go over my son’s big noggin. I tug and pull, and he screams as his blond locks stick up from static electricity. Ultimately, if I want this shirt to be worn, I either have to cut it or provide a prolonged stretch to the material, or my child will suffocate in a polyester sheath. This is remotely similar to the male with physiological phimosis.

In a review article, Chan and Wong (2016) described urological problems among children, including phimosis. They reported “physiological phimosis” is when the prepuce cannot be retracted because of a natural adhesion to the glans. Almost all normal male babies are born with a foreskin that does not retract, and it becomes retractable in 90% of boys once they are 3 years old. A biological process occurs, and the prepuce becomes retractable. In “pathological phimosis” or balanitis xerotica obliterans, the prepuce, glans, and sometimes even the urethra experience a progressive inflammatory condition involving inflammation of the glans penis, an unusually dry lesion, and occasional endarteritis. Etiology is unknown, but males by their 15th birthday report a 0.6% incidence, and the clinical characteristics include a white tip of the foreskin with a ring of hard tissue, white patches covering the glans, sclerotic changes around the meatus, meatal stenosis, and sometimes urethral narrowing and urine retention.

This review article continues to discuss the appropriate treatment for phimosis (Chan & Wong 2016). Once phimosis is diagnosed, the parents of the young male need to be educated on keeping the prepuce clean. This involves retracting the prepuce gently and rinsing it with warm water daily to prevent infection. Parents are warned against forcibly retracting the prepuce. A study has shown complete resolution of the phimosis occurred in 76% of boys by simply stretching the prepuce daily for 3 months. Topical steroids have also been used effectively, resolving phimosis 68.2% to 95%. Circumcision is a surgical procedure removing foreskin to allow a non-covered glans. Jewish and Muslim boys undergo this procedure routinely, and >50% of US boys get circumcised at birth. Medical indications are penile malignancy, traumatic foreskin injury, recurrent attacks of severe balanoposthitis (inflammation of the glans and foreskin), and recurrent urinary tract infections.

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Role of ischiocavernosus and bulbocavernosus in male pelvic health

Male Pelvic Floor

Many therapists transition to treating men with the knowledge and training from female patients. When therapists apply this knowledge, for the most part, it works. When we spend some attention on learning what is a bit different, we might be drawn to the superficial muscles of the perineum. This old anatomy image does a wonderful job of "calling it like it is" or using anatomical terms that describe an action versus naming only the structure. In the image we are looking from below (inferior view) at the perineum and genitals. Just anterior to the anus we can see the anterior muscles within the urogenital triangle, with the base of the shaft of the penis located just anterior to (above in this image) the anus and perineal body. Notice that at the midline, we see muscle names the "accelerator urine". Modern textbooks refer to this muscle as the bulbocavernosus, or bulbospongiosus. Taking the name of accelerator urine, we can understand that this muscle will have an effect on aiding the body in emptying urine. It does this through rhythmic contractions, most often noted towards the end of urination, when the typical spurts of urine follow a more steady stream. This assistance with emptying can take place because the urethra is located within the lower part of the penis, the portion known as the corpus spongiosum. Because the bulbocavernosus muscle covers this part of the penis, and the inferior and lateral parts of the urethra are virtually wrapped within the bulbocavernosus, the muscle can have an effect on emptying the urine in the urethra.

Notice that if you follow the fibers of the accelerator urine muscle towards the top of the image, where the penis continues, you will notice fibers of the muscle wrapping around the sides of the penis. These fibers will continue as a fascial band that travels over the dorsal vessels of the penis. This allows the muscle to also have a significant action during sexual activity, in which blood flow (getting blood into, keeping blood in, and letting blood out of the penis) is paramount.

On either side of the penis we can see what is labeled the erector penis. As these muscles cover the legs, or crura which form the two upper parts of the penis, when the muscles contract, blood is shunted towards the main body of the penis. This of course helps with penile rigidity, as the smooth muscles in the artery walls of the penis allow blood to fill the spongy chambers.

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Physical Therapy Interventions for Male Urinary Incontinence Post-Radical Prostatectomy


The Center for Disease Control reports that prostate cancer is the most common form of male cancer in the United States (just ahead of lung cancer and colorectal cancer), and the American Cancer Society estimates that 1 in 7 men will be diagnosed with prostate cancer at some point in their lifetime. With prostate cancer being so common, it is likely that a male with symptoms of urinary incontinence following a prostatectomy may show up at your clinic’s door for treatment. What do you do? Whether you have extensive training for male pelvic floor disorders or are just starting your initial training for pelvic floor dysfunctions, you likely have some intervention skills to help this population.

A recent case report in the Journal of Women’s Health Physical Therapy, outlines management of a 76-year-old male patient with mixed urinary incontinence postprostatectomy 10 years. This case report does a nice job describing not just physical therapy (PT) interventions, but also multifaceted management of a typical patient post radical prostatectomy. The case report describes a thorough history, systems review, pelvic floor muscle (PFM) examination, tests &measures, and outcome assessment. Our discussion will focus on interventions as you may already possess the skills for several of the treatments included in this patient’s plan of care.

The patient’s complaints were mixed urinary incontinence (UI) symptoms including 3-4 pads per day and 1 pad at night. He reported nocturia 3-4 times per night. 2-3 times per week he had large UI episodes that soaked his outwear. Also, he complained of inability to delay voiding, and UI with walking to the bathroom, sit to stand, lifting, coughing, and sneezing.

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"We Are Desperate"

We Are Desperate
Male Pelvic Pain: What Therapists Can Do to Help End the Desperation

Recently, a note was left at my doorstep by the wife of an older gentleman who had chronic male pelvic pain. His pain was so severe, he could not sit, and he lay in the back seat of their idling car as his wife, having exhausted all other medical channels available to her, walked this note up to the home of a rumored pelvic floor physical therapist who also treated men. The note opened with how she had heard of me. She then asked me to contact her about her husband’s medical problem. It ended with three words that have vexed me ever since…we are desperate.

Unlike so many men with chronic pelvic pain, he had at least been given a diagnostic cause of his pain, pelvic floor muscle dysfunction, rather than vaguely being told it was just a prostate issue. However, the therapists that had been recommended by his doctor only treated female pelvic dysfunction.

“We are desperate”: A Call to Action for All Therapists to become Pelvic Floor Inclusive

My first thought after reading the note was, “I bet shoulder or knee therapists don’t get notes like this on their doorstep.” My next thought, complete with facepalm, “THIS HAS TO STOP! Pelvic floor rehab has got to become more accessible”.

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If You Don’t Ask Men About Erectile Dysfunction, Who Will?


In the world of pelvic health, we are constantly meeting patients who are surprised to learn about the scope of what we do. Oftentimes, it is because we mention the pelvic muscles’ roles in sexual health that a patient will offer up symptoms with their sexual health, or ask a few more questions. Outside of pelvic health professionals asking about sexual function, do men bring up these issues with anyone? Not usually. In Fisher and colleagues 2-part “Strike up a conversation” study (2005), the authors reported that men who have erectile dysfunction (ED) are worried about their partner’s reaction, don’t want to admit to having a chronic problem, and frankly, just don’t even know where to start. Unfortunately, the partners of men who have ED have the same concerns. In addition, partners are worried about bringing it up and “making their partners feel worse about it.” When men did bring up sexual concerns with their physician, although they reported feeling nervous and embarrassed, they also reported feeling hopeful and relieved.

This issue was highlighted in a recent interview and article published on National Public Radio. The article shares that for war veterans, sexual intimacy is often affected, and yet, is often ignored. A Marine who suffered PTSD after a head injury and shrapnel to the head and neck describes how he had to go to the doctor several times just to work up the nerve to ask for help for his sexual dysfunction. He also shared how it was difficult to talk about “…because it contradicts a self-image so many Marines have.” Apparently you don’t have to be a Marine to feel the same intense pressure related to talking about sexual issues. I have spent more time in the past year trying to better understand why men don’t discuss these issues, with a best friend or partner, and each time, my question of “what would that be like if you brought it up?” is met with near bewilderment, as if revealing this issue were akin to revealing your deepest, darkest secret. Apparently, it is. Telling a buddy you have erectile dysfunction, for men, seems to be like showing your enemy where the chink in your armor is, or like setting yourself up to be the center of every “getting it up” joke for the remainder of your life.

The bottom line is that we can be part of the solution to this problem, because men must be certain that their medical provider knows about any emerging or worsening erectile dysfunction. Loss of libido, or changes in erectile function can be associated with heart issues, with diabetes, or with other major medical concerns. Research such as the referenced “strike up a conversation study” has demonstrated that health care providers or partners may positively influence a patient’s access to care. Once medical evaluation has been completed, the role of the pelvic health provider is critical in improving sexual health for men with dysfunction. If you are interested in learning more about the role of the pelvic health provider for erectile dysfunction or pain related to sexual function, the Male Pelvic Health continuing education course will be offered 3 times this year through the Herman & Wallace Pelvic Rehabilitation Institute. Your next opportunity to learn about urinary and prostate conditions, male pelvic pain, sexual health and dysfunction is next month in Portland, Oregon.

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Treat Men As Equals


“Please stress the need to examine men…For some reason, most female PT`s shy away from a male’s private parts totally. It would be great if females were taught that it's important to go there…And treat us as equals in this arena.”

This is an excerpt from a recent email we received at Herman & Wallace headquarters, and it highlights a common theme, that of patient access to care. While there are many factors driving patient access to pelvic health, availability of therapists trained in various conditions is certainly one major issue. By the time any patient is referred to pelvic rehabilitation, they have already overcome the challenge of many providers not being aware that there is help for pelvic health issues, and insurance or payment hurdles that can also cause a patient to delay or avoid recommended treatment. Many physical therapy programs have done an outstanding job in developing and marketing women’s health programs, with men’s health programs addressing post-prostatectomy care or male pelvic pain coming along almost as an afterthought.

So what is really limiting the care of men who wish to overcome urinary, pain, or sexual dysfunction? For many locations around the country, there simply is not enough awareness of the scope of pelvic rehab, the nearest pelvic rehab provider may be far away geographically (or have a months-long waiting list), or the clinic may limit pelvic healthcare to women. If the clinic chooses to only provide care to women, what are we being discriminating about? The word “discriminate” has at least two rather distinct definitions, one that is more negative, and meaning that we are acting in an unjust or prejudicial manner, and another that simply means we are recognizing a difference between patient groups. If we choose to discriminate against treating men in a pelvic health setting, it’s easy to understand that if a therapist has never been instructed in how to examine a male patient, it may be prudent to avoid such evaluation until training is completed. We can find examples of this situation in other aspects of clinical care: if I have never taken proper training in evaluation of the vestibular system, for example (a condition that historically has not always been comprehensively instructed in school), then it’s in my best interest (and that of the patient) to only provide such care once I have taken appropriate training.

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Does Low Testosterone Cause Peyronie's Disease?


Peyronie’s disease is a condition in which there are fibrotic plaques (sometimes calcified) that can cause a curvature in the penis, most notable during erection. Pain as well as urinary and sexual dysfunction may occur with Peyronie's disease. Increased attention has been given in recent years to the relationship between male hormones, erectile dysfunction, and Peyronie's disease. According to the Mayo Clinic, testosterone, the predominant hormone affecting male physical characteristics, peaks during adolescence and early adulthood. Testosterone gradually decreases about 1% per year once a man reaches age 30-40. Some men experience symptoms from the decline in testosterone and these symptoms can include decreased sexual function, sleep disturbances changes in bone density and muscle bulk, as well as changes in cognition and depression. Because other factors and conditions can cause similar symptoms, patients with any of these changes should talk to their medical provider to rule out diabetes, thyroid dysfunction, depression, sleep apnea, and medication side effects, according to Mayo.

In an article published in 2012, Iacono and colleagues studied the correlation between age, low testosterone, fibrosis of the cavernosal tissues, and erectile dysfunction. 47 patients diagnosed with erectile dysfunction (ED) were included, with 55% of the 47 men being older than age 65. Having increased fibrosis corresponded to having a positive Rigiscan test- meaning that a nocturnal test of penile rigidity demonstrated abnormal nighttime erections. Low levels of testosterone also corresponded to erectile dysfunction. (This is an open access article with full text available) Another published article agreed with the above in that low testosterone is associated with Peyronie’s disease and/or erectile dysfunction. The authors are cautious, however, in describing the association between the variables, as causation towards plaque formation characteristic of Peyronie’s is not known.

The larger question about Peyronie’s disease is what a patient can do to improve the symptoms of the condition. Therapists who treat male patients are increasingly interested in this question, and many are working with their patients to address the known soft tissue dysfunction. Interventions may include teaching patients to perform soft tissue mobilizations and stretches to the restricted tissue, and educating the patient in what the available literature tells us about rehabilitation of this condition. Hopefully, as male pelvic rehabilitation continues to grow in popularity, more therapists will contribute case studies and participate in higher levels of research so that more men can add conservative care of Peyronie’s to their list of treatment options.

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Varicoceles and Scrotal Pain

Vericoceles

Varicoceles are enlarged veins that occur in the scrotum. They can be common in adolescent boys and men, with an incidence rate of approximately 15%. Because up to 1/3 of men dealing with infertility have a varicocele, a repair of this venous herniation may be a first line treatment for male fertility. Varicoceles are sometimes referred to as feeling like a "bag of worms" due to the distended veins that coil through the area (the U.S. National Library of Medicine provides a useful illustration). Although varicoceles may be painless, they are thought to be symptomatic in up to 10% of men. Symptoms can be dull, aching, throbbing, and can worsen with physical activity. Conservative care includes scrotal support, limiting physical activity, and using anti-inflammatory medications.

Pelvic rehabilitation providers may work with a male patient who complains of scrotal pain, and who has a known diagnosis of a varicocele. If the patient is unsure of such a diagnosis, questioning the patient about prior discussions with his medical providers may reveal that he was told about “enlarged veins in the scrotum” or similar description. Visual inspection may reveal the tell-tale appearance of distended veins inside the scrotum, and palpation may reveal a significant difference among sides (unless both sides are involved of course.) Physical examination for a varicocele is usually completed in supine and standing positions and may be palpable with or without Valsalva maneuver. Keeping in mind that the differential diagnosis for pain in the scrotum can include medical conditions such as testicular torsion, epididymitis, inguinal hernia, testicular tumor, hydrocele, epididymal cyst, or sperm granuloma, patients who have complaints must see an appropriate medical provider to rule out such conditions. It is also possible for a patient’s condition to change or worsen if a period of time has passed, with communication with the referring provider recommended. Post-surgical complications that should also be considered are inguinal hernia repair for nerve entrapment or vasectomy.

Because of the nerves traveling in the same pathway as the involved veins, we can also consider the neural tension potentially created from the increased venous distension creating either (or both) compression and drag. Surgical options may be discussed by the medical provider, and these might include a microsurgical ligation or a varicolectomy. According to Park & Lee (2013) “A varicocelectomy should be considered in patients with no alleviation of their pain after conservative management, including resting, scrotal elevation, and nonsteroidal anti-inflammatory analgesics.” Conservative management is exactly where we can fit in as providers of pelvic rehabilitation. Including a condition such as a varicocele in our differential diagnosis and treating planning can further our success with patients.

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