Meet Matt
Fully Recovered
Riding Normally
MTB & Road
Riding Type
Climbing, technical mountain
Riding Speciality
Penile pain with urinary symptoms
Primary Symptoms
Stress and anxiety
Likely Cause of PN
How it Started
I initially started peeing blood in November 2018. It seems this was unrelated, but it certainly started the plunge into the multitude of testing at the hands of the urologist. This only seemed to increase my symptoms as my anxiety was certainly ramping up.​ My penile symptoms really began in winter of 2019. I thought I must have a UTI - burning and itching at the tip of my penis.
Symptoms
My symptoms included pain at the tip of the penis, difficulty with urination, and at times being unable to start peeing. Some of this may have been related to prescription medications. I also had discomfort at times in my scrotum.
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At my worst, my pain was constant and fluctuated between a 3 and a 7 during the day. The mental challenge of the condition proved far beyond the physical.
Causes
I don’t know that I have the complete answer to what caused this. I think my road bike fit played a role. I ride with a high saddle height to bar drop due to having long legs and short arms. This puts me in a more aggressive position on the bike and increases pressure on soft tissue.
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At the same time, I went through an extremely stressful period at the end of 2018. I had a job change, my dad had a massive heart attack, and my beloved dog passed away - all within several months. I also experienced several panic attacks, which I had never had before.
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For my situation, I truly believe that my pain was mostly caused by intense amounts of stress. At the time, I couldn’t understand how mental anguish could possibly cause physical pain like this. I had always associated pain with tissue damage and healing, like broken bones or sports injuries.
What Helped
I initially fell into the black hole of multiple local urologists attempting to diagnose and treat me. This resulted in a lot of fear, a lot of drugs that did nothing, and lots of tests that showed nothing. Not knowing what was wrong only increased my fear and anxiety.
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I eventually found pelvic physical therapy. Dry needling with e-stim was a turning point. The first time I tried it, I was skeptical but willing to try anything. My pain was around a 7. The PT only did dry needling for about five minutes, and on my drive home my pain dropped to a 1. This was the first time I felt hope that I could recover.
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I also made lifestyle changes like:
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Stretching to relax my pelvic floor
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Weekly Pilates reformer classes to open up the pelvic floor
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Changing my gym routine and eliminating squat movements and certain abdominal exercises that increased symptoms
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Medication was part of my journey as well, including Cymbalta daily and Klonopin for about six months.
Mind-Body Insights
One unexpected clue came when I took a dose of my mother’s Klonopin. I woke up and my pain was almost completely gone. While this didn’t last - and I’m not suggesting this as a treatment - it was an important signal that my pain might be coming from my brain, not tissue damage.
I later worked with pelvic PT Kelly Sammis in Colorado. She gave me the first real hope that I could get better. She told me she had treated men with the exact same pain who were not cyclists, which was powerful because I was convinced cycling had caused my pain. She also spent a lot of time talking about the stressful events that occurred before my symptoms began.
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Kelly told me my tissues were fine and that my brain needed retraining. This was extremely hard to accept. She suggested I sit on my bike on the trainer without pedaling to teach my brain that the saddle was safe. I struggled with this - as a cyclist, it’s hard to be half in.
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The true turning point came unexpectedly. I went to one of my favorite technical trails with my girlfriend. I was terrified. I was in pain before I even started riding. But I rode anyway. About ten minutes in, my pain dropped. Then another rider passed me and my competitive instincts kicked in. I focused entirely on catching him. Six miles later, I realized I had no pain. That was the moment I truly believed my brain was reacting to fear - not damage.
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From that point on, I continued improving. I still had flare-ups at times, but I understood them as part of retraining. Eventually, I reached zero pain. I believe my experience fits with TMS (tension myositis syndrome). I recommend The Mindbody Prescription by Dr. John Sarno.
Current Status
I am fully recovered. I don’t worry about flare-ups, time in the saddle, how many times I’ve ridden in a week, or racing on my hardtail. I ride whenever and whatever I want without worry. I recently completed an eight-week mountain bike race series with zero issues.
Personal Note
The mental challenge of this condition was far beyond the physical. Cycling was my identity. Losing it meant losing my social network, my outlet, and my sense of self. I isolated myself at times and reached very dark places.
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Researching symptoms online only increased my fear. The outlook I saw was lifelong pain and management. Being told by doctors that my riding days were over made it easy to lose hope. I write this in the hope that it may help others in the journey. I can’t say enough about the people who helped me: Kelly Sammis (PT), Dr. Nel Gherig (urologist in Denver), and Cindy Martin (local PT). I will never forget how much they helped me.