Name: Andrew
Location: Marietta, Georgia
Primary type of riding: Mountain Biking
Years riding: 28 years
When did symptoms start: April 2022
What did initial symptoms feel like: Frequent/urgent/painful urination
If known, presumed causes of pudendal neuralgia: Stress and anxiety
Amount of time off the bike since injury: 1.5 years
Symptoms: Urination issues, sexual pain/dysfunction, deep pelvic pain, constipation, pain when sitting
Treatment: Initially physical treatment - pain medication, pelvic injections, stretching, pelvic PT. Psychological remedies - nervous system regulation, meditation, deep breathing, journaling, yoga!
Recovery Status: Only minor sitting pain left from stress and some physical triggers
Are you riding again: Yes!
Personal note: I’d like to thank Scott, Scott, Matt and Fisher from the site for answering my questions, making me feel confident that I could recover and messaging with me endlessly in support of my healing journey.
My initial big flare up happened in April 2022, but there were symptoms earlier in hindsight (more on that later). It seemed like I had a massive UTI with frequent/urgent/painful urination, up all night with no sleep. I went to the urgent care clinic and tested negative for an infection and told to get to a urologist. This happened again 2 weeks later before I could get to the urologist. There I was told that I had hypertonic (cramped) pelvic floor muscles and to go to a pelvic PT, decrease my stress and stay off my bicycle for a few weeks. Luckily I had a planned week off from work and I started on all that. But, when I returned to work, the pain level immediately went up to an incredible level, completely debilitating, sleepless nights shivering in pain. After suffering through the week and trying unsuccessfully to work, I decided to go on short-term disability for 6 weeks. Along with the deep pelvic pain, I had urination issues, sexual pain and dysfunction and constipation. It was a very dark time.
The next few months consisted of going on pain medications, getting 6 injections in my perineum (yes, there), going to pelvic PT appointments (yes, there), and religiously stretching. And spending way too much time searching the internet for my symptoms and doom scrolling my fate. The fact that I was a cyclist came up often but I never had pain while riding or immediately afterwards so it was confusing. But still I heard/read horror stories about people never being able to ride again and that this was also called “cyclist syndrome”. At this time I was completely focused on physical remedies even though all of my practitioners talked about the psychological component. Over the past few years and especially the 6 months prior, I was becoming increasingly stressed out and on edge with anxiety panic attacks based on first world problems really, like raising teenagers, weird health issues, my father’s alcoholism, costly home repairs, fear of upcoming neglected dental work, career uncertainty and interviewing for a new job, I’m civil/environmental engineer/consultant and client/project manager. All of these things were stacking up and I was experiencing other symptoms that I didn’t understand. I was a ticking time bomb but didn’t realize it.
As others on the site have noted, being off the bike challenged my identity. It was my exercise and social outlet, I made friends through cycling. I rode with my wife and teenage sons. I did big solo rides to clear my head. My garage is filled with bikes and my house with bike artwork. It was difficult explaining to people why I wasn’t riding when there was no crash or acute injury. I had also stopped coaching soccer after doing it for 12 years as my sons aged out. So, not only was I in pain and not working, I felt lost and adrift. It was one of the most difficult times of my life and I’m incredibly thanful for my wife and a few others for supporting me through this struggle.
By October 2022, I was close to feeling recovered and starting to ride again. But my father’s health went downhill fast with aggressive cancer and he died in early December. All of my symptoms came back and more. Now I also had intense sit bone pain too and could only get by with sitting on a heating pad. I now feared that I had pudendal neuralgia if I ever had doubts before. I had to take all of December off from work. I went back on meds, went to the PT and had 2 more injections. It felt bleak and I was so incredibly low and I couldn’t believe I was back in debilitating pain and worse in some ways. It felt hopeless.
In early 2023 as I felt a little better, I decided to dig into the psychological side of things. It was at this time that I discovered the concept of mind-body pain (also called TMS, tension myoneural syndrome) that pelvic pain/dysfunction and pudendal neuralgia is similar to back pain, headaches, irritable bowel syndrome and many other conditions where chronic pain/symptoms can develop from a heightened nervous system and repressed emotions. I think most people understand that there is a connection between emotions and acute physical reactions (blushing when embarrassed, butterflies when nervous, headache when stressed, etc.) but it’s a radical idea that chronic pain can be from our emotions. I read books from Dr John Sarno (The Mind Body Connection, 1991), Alan Gordon (The Way Out, 2021) and Dr Schubiner (Unlearn Your Pain, 2010), consumed dozens and dozens of podcasts and YouTube videos and started working with a mind-body pain coach. All of these helped me understand that my pain was real but it did not originate from a structural issue that needed to be fixed or heal. The mind-body pain coach taught me how to regulate my nervous system through deep breathing, meditation, day-to-day anxiety reduction practices and a technique called somatic tracking.
By March 2023, I was off all meds and starting to see the light at the end of the tunnel. I was confident that I did not have a structural source for my pain and that my way out was my mind. But I was still off my bike as my only remaining symptom was a sensitive sit bone that would spike up pain sometimes with stress or sitting on some surfaces. Everything was pretty normal but I still feared another real flare up. In May, on my 50th birthday, my wife got me to try yoga and now I’m hooked. It’s helped so much with teaching me peace and calmness in my body and mind. In July, I started working with a different mind-body stress coach that helped me understand that my lingering symptom was tied to a lack of purpose, changing identities and not facing other challenging emotions. Her approach was from a much higher level than the chronic pain or my immediate emotions. She helped me with a job change (left the company I was with for 28 years) and coached me to getting back on my bike in September. I’ve now been back to mountain biking, doing longer and longer rides and don’t fear pain. I’m riding multiple days in a row on technical single track and it feels awesome to be back on my bike and I’m enjoying riding for fun again. I still have some sit bone sensitivity but it’s completely independent from cycling. And I know as I face some of these other personal issues, l’ll continue my recovery.
I’m actually at a point now that I am thankful for this pain journey as I look at life and stress differently now. I know that these symptoms were messages from my body that I needed to be better connected to my emotions.