Photo courtesy of Brett Rothmeyer
Name: Sarah
Location: Austin, TX
Primary type of riding: Gravel racing, road
Riding specialty: Endurance, climbing
Years of riding experience: 7
When did symptoms start: February 2019
What did initial symptoms feel like: UTI-like symptoms
If known, presumed causes of pudendal neuralgia: Unknown-I am still undergoing my workup. Endometriosis is a possibility.
Amount of time off the bike since injury: I have taken two 15-20 day stretches off the bike while getting a workup
Symptoms: Early symptoms: UTI-like symptoms (urinary urgency, frequency, urethral burning)
Current symptoms: Vaginal and urethral burning pain typically following activity. Sometimes this also feels like the start
of a UTI.
Treatment: Bilateral pudendal nerve block, pelvic floor PT, icing and ibuprofen as needed, vaginal baclofen/lidocaine suppository as needed
Recovery Status: I am recovering and undergoing a work-up currently.
Are you riding again: My road back to normal cycling has been long and frustrating but fairly successful. I have gotten back up to training 10-12 hours per week and even racing on gravel.
Personal note: This has been a long and frustrating road. I initially went to a Urologist with my symptoms because they felt like recurrent UTI symptoms but my urinalysis tests were clean. I got diagnosed with over-active bladder syndrome (OAB) and was put on a medicine to help reduce bladder spasms. I was able to race one gravel season during this time and got through it by taking Azo before and during endurance races. This helped some, but eventually my symptoms got worse and I got put on a second medication for OAB. While on the dual medication therapy, I increased my training volume to ~16-18 hours per week and then my symptoms got worse. My Urologist told me she thought I had interstitial cystitis. I got lidocaine injected into my bladder for temporary relief but it did not do anything to help. This was when I started to look elsewhere for help and someone suggested that I might have PN. I got a bilateral nerve block and it helped my pain, confirming that I have PN. I was able to start riding again but the pain eventually came back. I am now in pelvic floor PT with a PN specialist and am pursuing both a Gastroenterology (GI) workup and an endometriosis workup to see what the root cause of my PN is. My GI doctor is concerned that I may have an endometriosis implant wrapping around my rectum and I am concerned that there may be implants near the pudendal nerve. I am going to try to keep riding through the work-up if I can.
May 2021 Update:
When Kate asked me to write about my experience with PN for this site, I was still undergoing a workup. I wanted to circle back and clarify what the official diagnoses were as I have had people reach out to me about pudendal neuralgia.
After my pudendal nerve block, I had some relief, but it was mostly from being off of the bike. The pain came back and so I saw other doctors to try to make sense of my symptoms. I changed Urologists and was treated more aggressively for overactive bladder syndrome and referred trigger point pain. My PT was able to replicate the pain that I was feeling on the bike by doing internal trigger point release therapy, which told me that a large part of my symptoms were from pelvic floor dysfunction. I also changed medications from baclofen/lidocaine suppositories to valium suppositories to help the pelvic floor muscles release. I started using these before every ride and had some improvement in my symptoms.
While I was optimizing my Urological care, I also saw a specialist for endometriosis excision surgery in January 2021. The only way to diagnose endometriosis is to go in and look, so I went in for surgery not knowing if I had it or not. Turns out, I did have endometriosis and my surgeon excised what he could. I don’t know how long the implants had been in there, but I had been experiencing symptoms since I was a teenager. Over the course of approximately 17 years of pain, my whole abdomen got used to expecting pain and I developed a habit of unintentionally “guarding” against it, which contributed to me developing a hypertonic pelvic floor.
My road back to normal cycling has been long and frustrating but fairly successful. I have gotten back up to training 10-12 hours per week and even racing on gravel, which is the most painful type of racing for pelvic pain (in my opinion). Sometimes I get flare-ups and need to decrease my desired ride time or change from off-road to road, but my symptoms are explainable and controllable.
My next step is to get a neuromodulator implanted to help control the overactive bladder symptoms without the need for continued medication. I am on two maximum dose medications for my symptoms, one of which is in a class of medications that is associated with developing dementia. After weighing the pros and cons of continuing oral medications versus doing an Interstim placement with my doctor, we decided to try the Interstim. I will have my first surgery on June 2nd and my second one on June 16th (if the trial period goes well).
If my road through pain, incorrect diagnoses, different therapies, and constant ups and downs has taught me anything, it is this: always advocate for yourself, never settle for less than the quality of life you want, and remember that recovery is not linear.