Name: Matt
Location: Alabama
Primary type of riding: Mountain, road
Riding specialty: Climbing, technical mountain
Years of riding experience: 20
When did symptoms start: Winter 2018
What did initial symptoms feel like: I initially started peeing blood in November 2018, however it seems this is 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, thought I must have UTI, burning/itching at tip of penis.
If known, presumed causes of pudendal neuralgia: I don’t know that I have the complete answer to this. I think that my road bike fit played a role. I have a high saddle height to bar drop position due to having long legs, short arms. This puts me in a more aggressive position on the bike and puts more pressure on soft tissue. In addition I went through an extremely stressful period at end of 2018. Job change, Dad had massive heart attack, my beloved dog passed away, all in a matter of several months. I had several panic attacks which I have never had.
Amount of time off the bike since injury: 1 year
Symptoms:
- Pain at tip of penis
- Difficulty with urination, may be related to prescription meds
- Unable to start peeing
- Some discomfort at times in scrotum
Treatment:
- Physical therapy
> Dry needling with e-stim, the first time I did this I was at a bad point. I had been off of
bike for months and my pain was ramping up. I was very skeptical but willing to try anything. My pain was around a 7 at this point. PT only did dry needling for about 5 minutes and on my drive home my pain had dropped to a 1. First time I had gained hope that I could recover.
> Manual therapy by PT as well although hard for me to tell if it really made a difference
- Lifestyle changes
> Stretching to relax pelvic floor
> Weekly Pilates reformer class to open up pelvic floor
> Changed workout routine at gym, eliminated squat movements along with some
abdominal exercises as they seemed to uptick symptoms
- Medication
> Cymbalta 30mg daily
> Klonopin 1mg daily, used for about 6 months but have been off of this for about 3
weeks
Recovery Status: My symptoms have come down to around 1 or less most of the time. I tend to be symptom free in the mornings and then if I have symptoms they elevate as the day progresses. I can workout at gym, run, do Pilates without any issues. Have not gotten on bike in several months. Part of this is the last time I did it I remembered how much I love the sport and then I had uptick in symptoms and this really got me down.
Are you riding again: Not yet, but hopeful
Personal note: I can say the mental challenge of the condition proved far beyond the physical. As a longtime rider my entire identity was somewhat lost. I have never gotten to such a dark place. Friends don’t know how to treat you and I isolate myself at times. I think it is important to interact with others that can help with the walk through this.
August 2021 Update:
Okay I’m way overdue for providing update on my status. This has been an extremely difficult journey both mentally and physically but I can say without hesitation, I AM FULLY RECOVERED!! I don’t worry about flare ups, I don’t worry about time in saddle, I don’t worry about how many times I’ve ridden in a week, I don’t worry about riding or racing on my HARDTAIL!, I ride whenever and whatever I want without worry! I say all that in the hopes that will provide encouragement and hope to others.
For my situation, which may or may not be yours, I truly believe that my PN was mostly caused by intense amounts of stress. My PT, Kelly Sammis, said to me that the enormous amount of stress that happened is a huge part of this pain. At the time, that just didn’t compute to me, I’ve had lots of sports injuries over the years, broken bones, etc. So for me the pain correlates with tissue damage and then you get better. I just could not understand that mental anguish could possibly cause a physical pain like this. While I was suffering with PN it was so difficult not to be focused on the pain, you feel as though you can’t get away from it. In addition, I researched diligently trying to gain information for myself on treatment options, which was bleak, and this only added to my anxiety and stress. The loss of cycling for me was a devastating blow, I lost my social network, my friends, my outlet, and this definitely caused depression for me, which only exacerbated symptoms and prolonged getting back.
I can now look back and see some key points in my journey. At the onset of the pain I fell in the black hole of multiple local urologist attempting to diagnose and treat me. This resulted in a lot of fear, a lot of drugs, which did nothing, lots of test, which showed nothing. Not knowing what was wrong adds to the fear and anxiety. Then you start researching the internet in an attempt to find help, and then your fear/anxiety gets worse. The outlook you see is that of never ending lifelong pain, and finding ways to manage it. You see things like “cycling syndrome” and realize your riding days are probably over. All of this has an impact. The first sign I had that maybe this pain is not damage to my nerve from cycling, came unexpectedly. As I was in the throws of pain, I took a dose of my mothers klonopin, which is a med for anti-anxiety. I woke up and my pain was almost completely gone. This didn’t last and I am not saying you need to get on klonopin, not a good drug to be on, but this was a clue that my pain had to do with my brain. At the time, I still did not believe this or understand it.
I finally found PT in Colorado, Kelly Sammis, who got me on the right track. I was about 6 months into the journey by the time I met Kelly and was not in a good place. My pain was constant and fluctuated from 3-7 during the day. I went to Colorado and met with her. First off, she is an extremely positive person, she gave me the first hope that I could get better. Several things she said to me really stand out, she stated she had men with exactly the same pain as me who were not cyclist!! This was a powerful statement as I was convinced my cycling had caused my pain. She also spent a great deal of time talking about what had happened in my life leading up to my onset. I had a series of very stressful events in a short time span, my 14 year old retriever passed away, I lost my job, my dad had massive heart attack. She stated that this was a key piece of the puzzle, wow, really?!! Kelly performed dry needling on my pelvic floor and it was the first virtually pain free moment I had had in months! This also gave me hope that I could get better!
Fast forward, I had continued with dry needling with my local PT. I got to the point that my pain was down to a 1-2 most days but still never went away. I tried to get back on my bike 5 or 6 times and every time my pain would come back with a vengeance, very sharp and ramp up to around 7. This was very defeating, unfortunately this would really get me depressed. I felt my nerve must be permanently damaged. I talked to Kelly about this and she stated that my tissues were fine, and that my brain needed retraining, what?!! She said that my brain is sending pain signal even though my tissues are fine. Ok, so intellectually I can understand the concept but when you are living with pain in this area at this level it is EXTREMELY hard to embrace this concept. Kelly told me to help retrain my brain I needed to sit on my bike on the trainer and not pedal, this would help my brain learn that the saddle is a safe place. I must admit I did some of this but I was not as diligent as I should be, I wanted to ride!! As a 20 year cyclist it’s hard to be half in to the sport, people might say well maybe you don’t race or ride rough trails anymore… well that doesn’t really interest me. I trained hard to be able to do what I do.
Ok here goes the game changing piece of my story. I was still staying in the 1-2 pain zone and nothing seemed to be changing. Do I just live like this? I went to one of my favorite trails with my girlfriend on a perfect weather day. Temps were in the 70’s with bluebird skies. We had taken our mountain bikes even though we were not sure I could ride. I recall my nervousness, at the thought. The fear was almost crippling! I remember putting my cycling shorts on in pain! I thought well this isn’t going to last long I’m in pain before I even start. I did it anyway! I started the ride in pain, and then about 10 minutes in my pain dropped a notch. Keep in mind this is an extremely rocky, technical trail, and I’m riding my race hardtail. I kept riding, and then a younger cyclist passed me. I felt the competitive side of my brain say you can catch him. I told Bethel, I think I may see if I can catch that guy. I started riding as hard as I could, I was completely focused on catching that guy. Six miles later and I had caught up… THEN I REALIZED I HAD NO PAIN! This was the precise moment I realized my brain was indeed reacting to my fear. My brain was focused on the terrain, I was enjoying the trail, which allowed my brain not to focus on my pain! I finished the ride, 13 miles of super technical, rocky terrain without any pain. This was the moment I TRULY BELIEVED I was going to be fine. I discussed this breakthrough with Kelly, she stated that the re-training process might not be a perfect curve. Meaning it will probably take a bit to completely re-train and that flare ups might exist. She was right on it. I recall a ride I had right after my game changing ride where my pain returned. I was having the ride of my life, in fact crying I was so happy! I was almost done with the ride when my pain struck, pain was so bad I had to get Bethel to come pick me up and I had to walk out of the woods. The difference was I realized the pain was part of my brain retraining, by the time I got home my pain had gone away. I continually improved until I had ZERO PAIN!
I also believe that my PN was part of TMS, tension myositis syndrome. This may not be the case for all but I believe it was for me. I recommend reading book, the mindbody prescription, Dr. John Sarno.
At this point I ride whatever, whenever I want without any issues. I recently completed 8 week mountain bike race series, again on my hardtail, with zero issues. I was at a very hopeless place with PN. I was told by multiple doctors my riding days were over, including Dr. Conway. All of these outside factors can impact your belief in getting well, it’s easy to lose hope. I write this in the hope that it may help others in the journey. I can’t say enough about my experience with Kelly Sammis PT from Colorado, Dr. Nel Gherig urologist Denver, Cindy Martin, local PT. I will never forget how much they helped me!!