Male Pelvic Pain Explained: Tommy’s Success Story

In pudendal neuralgia by Stephanie Prendergast10 Comments

 

     Happy New Year everyone! We are excited to announce that Liz and Stephanie’s book, Pelvic Pain Explained, is on sale here!

    If you are on the road to recovery from pelvic pain, or know someone who is, you need to read Pelvic Pain Explained. We wrote this book to help people with pelvic pain navigate the treatment process and restore their quality of life. We wrote this book to help pelvic floor physical therapists, doctors, and psychologists streamline their approach to diagnosing and treating pelvic pain to help medical providers help their patients, faster. In honor of the New Year, we are dedicating this week’s blog to one patient’s success story featured in Pelvic Pain Explained.

 

Tommy’s Story

 

     When I was 26, I woke up one day with urinary symptoms. Basically, I had a weak stream, and felt as if I wasn’t voiding completely. I also had a sensation in my urethra that’s hard to describe. It wasn’t pain, just a feeling of something being not quite right. Because the issue was urinary, I visited a urologist. The first doctor suspected either a prostate infection or a sexually transmitted disease. But all tests and cultures for either of those diagnoses came back negative. Nonetheless, the doctor diagnosed me as having “prostatitis,” which is an infection of the prostate, and prescribed a course of antibiotics.

     When the medication didn’t clear up my symptoms, I made an appointment with a second urologist, with the same outcome. In the course of a year, I saw about ten urologists, each of whom gave me a different course of antibiotics for “prostatitis” despite the fact that test after test came back negative for infection. After a year of urinary symptoms, the severity of which would wax and wane, I woke up one morning in the most pain I had ever been in in my life. It felt as if someone was stabbing me in the testicle with a knife. On top of that, I was having shooting pains in my anus and abdomen. The shooting pain was so severe it literally sent me to my knees. I called two of the urologists that I had the most faith in, and both said I was having “complications of prostatitis.” At that point, I lost faith in these doctors’ opinions as well as in the diagnosis of “prostatitis”.

     Desperate for relief, I began searching online for answers. I focused my search on the prostate because I had never heard of pelvic pain or the pelvic floor for that matter. In my search, I found an out-of-state doctor who was treating symptoms like mine by removing the prostate. Despite the possible side effects that come with that surgery—impotence, incontinence—I was in so much pain that I was seriously considering going that route. Eventually, the shooting pains disappeared, but I was left with constant testicular pain. Not knowing what was wrong was terrifying. Also, I had always been a very active person; very exercise conscious, but because of the pain and my fear of doing something to make it worse, I stopped working out completely. In fact, I stopped doing anything active and began to spend a lot of time either on the sofa or in bed.

     Thankfully, in the course of my research, I happened upon a pelvic pain online support group, and that’s where I first learned about pelvic pain as well as pelvic floor PT. So I made an appointment with a PT on the East Coast where I lived at the time, and began treatment. PT didn’t help right away. Even though I was a super-compliant patient, it took about a year of regular PT and me being diligent with a home program for me to begin getting my life back. During that first year of PT, I lugged around a cushion everywhere I went for sitting and spent a lot of my time either on my sofa or in bed. I stopped drinking alcohol and caffeine and I wasn’t eating spicy foods because I was afraid all of these things were contributing to my pain. And because of my pain and my anxiety surrounding it, I barely did anything social or that I enjoyed. My every waking moment became completely dictated by my pain. A big turning point came when I decided that I needed to stop focusing on my symptoms and stop worrying that this would be something that I would have for the rest of my life. That realization was life changing for me. That very week I went out with friends and had a couple of drinks, and thought, “Okay, I can have a normal life here.” My mentality changed from that time forward. I found immediately that the less time I spent focusing on my pelvic pain, the better it got, and in turn the less I thought about it. I even began exercising again. I started swimming. It was an activity that allowed me to be active without flaring my symptoms.

     Then about a year into my pelvic pain, I moved to Los Angeles and began treatment with Stephanie at PHRC. By that time I was about 85% better, but I still had the testicular pain. It was improved, but was still there. What Stephanie found was that I lacked the motor control to relax my pelvic floor. Without the ability to do this, pelvic floor muscles will remain tight, and become even tighter with exercise thus continuing to produce pain. The first thing she taught me to do was how to relax my pelvic floor. Also, she found unresolved trigger points in several muscles that can cause testicular pain. So that’s what we focused on in treatment. So why did my symptoms start to begin with? Stephanie’s theory is that it was a combination of factors that set off my pain. For one thing, I’m a super-active guy who’s worked out hard with various trainers over the years. Add to that a history of low back pain, and voila! Pelvic pain! After a few months of weekly PT with Stephanie, I am now pain-free. It was quite a journey! I learned a lot about myself along the way that I’ll carry with me for the rest of my life. The most beneficial lesson I learned are the benefits of relaxation and meditation. I’m not really a spiritual person, but I now get how the mind-body connection works. I now have the tools to get stress out of my life, even if it’s just for a few minutes a day. I know how to relax and be quiet, and I now understand that my mind has a huge impact on what happens with my body, and that I can work to control it. And another of the more interesting things that came out of my pelvic pain journey was learning just how common a problem it is. As soon as I began talking to others about what was happening with me, people that I knew with pelvic pain issues or knew someone who had pelvic pain issues began coming out of the woodwork, giving me a chance to share what I learned on my own journey. And basically that’s number one, you need to see a qualified pelvic floor PT, and number two; recovery isn’t going to be immediate, so you need to try your best to do whatever it takes to continue to live your life.

 

Stephanie’s Comments

 

     It is not uncommon for us to see patients that have made significant progress in physical therapy but still feel like they have that “last 20% or so” to go. This was the case with Tommy. By the time he arrived in LA, he had gone through the diagnosis process and was in the rehabilitation process: physical therapy, self treatment at home, and making temporary lifestyle modifications such as using a cushion and avoiding exercises that provoked his particular symptoms. We needed to help him get the last 20%.

     It was helpful for me to know what his previously physical therapy consisted of, what his current symptoms were and what made these symptoms better and what made these symptoms worse. Tommy no longer had daily pain but he could not work out at the level he wanted to without provoking testicular pain. I knew from talking to his physical therapist back east that many of his musculoskeletal impairments had been normalized, which explained his improvement. However, something was still off and preventing him from working out without pain. I knew his preferred workouts caused pelvic floor muscle tightening and suspected that if working out causes pain it could be because he cannot relax his pelvic floor muscles after the workout. People without pelvic pain have trouble telling if their pelvic floor muscles are relaxed or tense and have trouble controlling these muscles themselves. Once someone develops pain this is even more challenging. Upon examination, my suspicion turned out to be true. He was ready for the next phase of rehabilitation so we began a program to help Tommy with motor control and we also identified a few other persisting impairments that were limiting his sitting. Our treatment plan focused on specific in office and at home treatments and after several months, Tommy was gradually able to do everything he wanted to do at the gym and he could sit comfortably without pain. 

    As I prepared the blog, I remembered Tommy gave us his story in late 2014.  I contacted him today to see how he is doing and I am thrilled to report he is still pain free and enjoying life back in NYC. I am glad to hear it and we thank him for his contribution to the book!

 

To read more about the content of Pelvic Pain Explained and to order a copy click here. 

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FAQ

What are pelvic floor muscles?

The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.

What is pelvic floor physical therapy?

Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.

What happens at pelvic floor therapy?

During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.

What is pudendal neuralgia and how is it treated?

Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.

Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.

What is interstitial cystitis and how is it treated?

Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.

Who is the Pelvic Health and Rehabilitation Team?

The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.

How many years of experience do we have?

Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.

Why PHRC versus anyone else?

PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.

Do we treat men for pelvic floor therapy?

The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.

Do I need pelvic floor therapy forever?

The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.

Comments

  1. Reply

    Great story. I related so much to his story regarding the mind/body connection. This is a piece that cannot be forgotten. For me, when. I am tense the pelvic floor is where this goes too and I will still have minor symptoms. Luckily, I am aware of this and a litttle TLC and sometimes self pelvic floor massage is all I need to resolve it. Thanks for sharing! As a women’s health practitioner-I cannot wait to read the book!

  4. Reply

    Can you please recommend someone near Milford Connecticut who will know how to treat Pelvic Floor Syndrome in a male patient? Thank you

      1. Reply

        I am a Patient of hematuria. My age is 31 from Kolkata, India . My problem started one morning . The blood was passing with urine during urination with burning sensation along with fever. Then I visited a Urologist He diagnosed UTI and gave me Atibiotics for seven days. And there was no bleeding after that . After seven days of completed antibiotics the blood in urine came out again during urination. Then I visited another Urologist with a urine culture, X ray, ultrasound, uroflownetric , blood test. There was nothing wrong except was infection ( E-coli bacteria). Again prescribed high medium Antibiotics for 10 days . After taking Glevo antibiotics and other medicines for 20 days, I went another urine culture which shows the presence of bacteria still now but it has reduced somehow. Then doctor prescribed another course of Antibiotics with high power. But the doctors are unable to detect the infected place. As in my case till date there was no pelvic pain I have got but a mild back pain experienced. But brother, I am very much in fear about Pelvic pain which is not got till date, so am I contact a PT for precutionary measure, I don’t know this pelvic floor pain may come to me in future. I don’t know wheather my problem turn towards bacterial prostrate. Best regards.

  5. Reply

    Great story! I’ve been struggling with pelvic floor pain for about 3 months, after being given about 8 weeks worth of an antibiotic that didn’t do much.
    I also experience foot tingling/burning when I have a flare up, is this normal? I am a very active, fit, 20 year old male

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