Name: Scott
Location: Iowa
Primary type of riding: Road
Riding specialty: Distance – century+
Years of riding experience: 10 years of serious riding after 35 years of running
When did symptoms start: 3/21/2019
What did initial symptoms feel like: Burning sensation, numbness – indoors static trainer
If known, presumed causes of pudendal neuralgia: Compressed nerve – cycling 4-5 days/week, Cycling Syndrome
Amount of time off the bike since injury: 1+ years
Symptoms: Current - Burning sensation, usually after urination mid-day, Past - couldn’t sit for 30min without pain
Treatment: PT, Acupuncture, EMDR, Egoscue Method, Biofeedback, Rolfing and Nerve Blocks
Recovery Status: Pain lowered from 7 to 2 at worst, pain free blocks of time, worse when sitting for long periods
Are you riding again: Yes
Personal note: Don’t give up, it’s very difficult finding a PT with skills to treat condition. I went to CA for treatment at the Sarton Clinic for 9-day extensive PT treatment program at 11-month mark, reduced pain considerably and taught me to self-treat.
I was originally mis-diagnosed with Prostatitis – very common, especially for older male athletes - treated with antibiotics for 90 days before finding a urologist to provide the correct diagnosis. Have seen 6 PTs and 4 urologists ranging from excellent to terrible. I did not use nerve pain meds – may or may not be a good idea? Lorimer Moseley has written excellent books on the science of pain and followed his approach.
Don’t ignore numbness, I was on my third seat for my indoor trainer, Zwift made riding for 3-4hr much more enjoyable but static trainer caused numbness that I didn’t experience outside – I wish I tried a rocker plate or didn’t ride through periods of numbness. I was a nationally ranked collegiate runner who has experienced several injuries, including Achilles tear. PN is by far my worst sports injury.
Finally – you’re not alone, I have read that 8% of serious riders may experience PN. Reaching out to others has helped the mental side of this injury – thankful to have met Kate to compare treatments notes.
July 2021 Update:
I just passed the 2 year and 4 month mark. Happy to report, I did my first ride since April of 2019. Even more happy that I was able to help a couple of people through Kate’s website find a path to healing. Ride was uneventful and fun, a bit nervous about pain but more nervous on remembering how to unclip and lean the correct direction. There were no ill effects from the ride and if anything it was a help mentally as another milestone in my recovery. No dual centuries in my plans or riding 4-5x a week but look forward to riding a couple of times per week with my wife, Anina.
Kate and I have talked about loss of a sport we love and we were accomplished in performing – must admit, it’s still a struggle losing a piece of one’s identity. For me finding a substitute is key. I did the virtual Birkie cross-country ski event last year 48K and will do the real thing in Wisconsin in 2022. So replaced Running with Biking and now Biking with Skiing – who says old dogs can’t lean new tricks?
Pain wise, most days are ok with lots of pain free days and periods within my day without pain. I still have a problem with brain signaling pain after urination but try to paint a mental picture of an arctic explorer to counter the hot feeling and chant my mantra “hurt not harm” and it usually will dial back down. In other words doing pretty well, just working on the mental side and filling in the ditch that my pain path created.
Feels like an awards speech but must thank all the people I have encountered along the way. Special thanks to Kate and Tim, cyclists that shared their journey and helped me so much. PT’s Julie, Becky and Kari – us PPS sufferers owe you a debt of gratitude. Doctors and medical professionals that take the time to understand PN and PPS and don’t blow us off or send us down the wrong path. I know they don’t like Doc Google but that path helped me find so many helpful people and treatments. Time as they say is a great healer – remember that peripheral nerves do heal and brain is elastic and can be taught to forget signals when nerve is healed. Final thanks to friends and loved ones, I couldn’t have done this without having Anina’s hand to hold and shoulder to cry on.
If anyone need support or help on this path, please reach out.