Pudendal Neuralgia: A Patient Perspective
Kate's Personal Story + Journey
Cycling was my life. It was the first sport I excelled at and it defined who I was for the last decade. My specialty was suffering. I loved creating long and demanding riding routes with obscene amounts of climbing and invite all my friends to join. It was fantastic. Riding bikes makes you physically and mentally strong and I took a lot of pride in that strength.
As a cyclist, and especially a cyclist that liked to climb, I was used to pain and discomfort. I spent a lot of time learning to relax into discomfort and befriending it. I think that’s why I didn’t notice the slow onset of symptoms. I have vague memories of burning or pinching sensations during and after rides, but nothing significant for a long time. Then during a ride two years ago, I knew something was wrong. My husband and I went out for an easy two-hour spin. On the final climb home, I started having a hard time sitting on the saddle. I felt like my labia was getting pinched. The pain was very sharp, intensely focused, and felt awful. Grudgingly through tears I waved my husband on and told him to meet me at home. Even though I wanted to call an Uber, I stood for the remaining 45 minutes of the climb and hobbled home. When I got back, I couldn’t reconcile what had happened. Maybe I needed a new saddle? Maybe my shorts were getting old? One bad ride wasn’t enough to make me stop riding. Even though I wasn’t in the best endurance shape of my life, my one-hour fitness was the strongest it had ever been. I was crushing lunch rides and taking QOMs. You don’t let that type of fitness go to waste, even if you’re in near-constant discomfort on the saddle. Like all good cyclists, I ignored the pain and powered through it.
Two months after my symptoms became acute, I switched saddles. I had told myself that my saddle was old and was certainly the problem. I believed that as soon as I fixed this issue, my pain would disappear, and I would be back to normal. Unfortunately, this wasn’t the case. The moment I sat on my bike my heart sank. The pain was still there and as strong as ever. That was a turning point for me, because I no longer had anything to blame or account for my pain. I decided to do something for the first time in my cycling career: I intentionally took time off the bike. Prior to that, the longest I had gone without riding was maybe two weeks, tops. And those were awful, restless weeks where I had trouble sleeping and couldn’t stay focused. I told myself, “OK, start with two weeks off the bike and I’ll bet you’ll feel better”. Two weeks came and went. No good. I upped it to four weeks. No improvement. In fact, it felt like things were getting worse.
Symptoms started creeping into my daily life. Sitting down was uncomfortable. Wearing tight clothing was unbearable. I had a lot pain when my bladder was full. I just didn’t feel like myself. Something was wrong but I didn’t have the language or understanding to account for what I was experiencing. I turned to Google to try and explain my symptoms. Do you know what happens when you search for things like “labial pain” or “it feels like I have a UTI all the time”? You get a lot of dark and scary results that resulted in more questions than answers. Searching on the internet made me more confused, fearful and anxious. I set up an appointment with my OBGYN. She was the first person who told me I was likely experiencing nerve pain but couldn’t pinpoint why. Still, she gave me a prescription for the drug Gabapentin. The medication helped reduce my daily symptoms, but I still didn’t have any of the answers I needed. Why did this pain suddenly start and what caused it? Can I recover from it, or will I have to take pain medication for the rest of my life? Will I ever be able to ride again?
I spent several more months off the bike, because I didn’t know if I was doing actual damage to my body. Riding was extremely important to me, but I didn’t want to permanently injure myself. It was during this time that I saw another OBGYN. She was a rider herself, so she was familiar with pelvic injuries common with cyclists. This doctor mentioned that I might be experiencing pudendal neuralgia. I went home and researched the condition. Of all the disorders, diseases and injuries I had encountered along this journey, pudendal neuralgia was the first one that matched my symptoms. It was even nicknamed “cyclist’s syndrome” because it’s common among cyclists. While I was excited to be able to name my condition, I was surprised that I had never heard about it before. I had been working in the bike industry for ten years and hadn’t encountered it a single time. I work closely with professional bike fitters, product developers, innovators in the industry, and some of the most talented cyclists in the country. In all those years, pudendal neuralgia never came up once. Even more concerning was the lack of clear information on the causes of pudendal neuralgia and how to recover from it. I was able to name the issue but had no idea what the next steps were.
After confirming that I had pudendal neuralgia, you’d think that I would have felt comforted knowing what I was up against. Instead, knowing what I had but not knowing how to treat it and how to get back on the bike was detrimental to my mental health. I spent months scouring the internet for doctors and treatment plans. At the time, none of them pertained to cyclists and none of them had a clear, step-by-step process for recovery. Most of the content I found was on cycling forums, where cyclists just talked in circles about the trial and error process of trying to get back on the bike. None of them seemed to be successful. When you don’t know why you’re injured, it’s hard to commit to something that isn’t a proven science. I was looking for medically backed explanations and solutions and I couldn’t find anything. I did find a pelvic floor physical therapist who was able to help a bit with daily symptoms, but she couldn’t explain why this happened and couldn’t outline a path to getting back on the bike. The compounding lack of clarity and persisting symptoms was devastating. I didn’t think I’d ever be able to recover. The constant internet searching made my head spin and continued to confirm there were no solutions, so I gave up trying. I was grieving. I was hopeless. There’s an overwhelming sense of loss and devastation when you are forced to let go of something you love.
I work in the bike industry, so I’m surrounded by passionate cyclists and non-stop bike culture. Because I wasn’t riding, I became isolated and alone at work. Folks knew I wasn’t riding my bike, but they didn’t know why. Some people were asking questions. Others were just giving me space. I found it hard to talk about, even with my closest friends. There was an accompanying sense of shame with my symptoms. I knew in my head there was no reason to feel ashamed, but I couldn’t help it. If someone asked “Why aren’t you riding your bike today”, my answer was “I’m still struggling with some saddle issues”, hoping that would be a sufficient answer. They’d usually follow up with “Oh that’s awful, what’s happening?”, which was the question I dreaded. I’d turn bright red and immediately want to crawl into a hole in the ground. Because what are you supposed to say? No one wants to hear, “Well it feels like someone is stabbing my labia” or “It hurts when I have to pee”. You can’t say that to someone in passing. So instead, I’d mumble back some vague answer like, “Oh, I’m just working through some issues”. But this constant covering up of my condition was exhausting. I dreaded coming into work and seeing my coworkers. I dreaded going into the locker room and seeing everyone getting kitted up for a ride. I felt like an outsider in a culture that I used to thrive in and love. This caused me to second guess my career and my identity. If I can’t ride my bike, why am I still working in the bike industry? If I don’t belong here, where do I belong?
About six months had passed since I gave up searching the internet for answers. During this time, I didn’t dwell on living with pudendal neuralgia. I accepted that I might have symptoms for the rest of my life, so I learned to separate myself from the pain and carry on. I shut out any thoughts about riding because it was too painful. I found other wonderful activities to fill my time and I tried to be content giving up my identity as a cyclist. But after six months of conceding, I found myself back on the hunt one evening. I was home alone, drinking a glass of wine, and thought “hey, it couldn’t hurt to look again”. During my hiatus from searching the internet, an article had been posted by two doctors in Colorado. This was the first article that contained clear and direct information on pudendal neuralgia and cycling. I immediately contacted both authors of the article and was on the phone with them a few days later. In years of searching, I hadn’t spoken to anyone as intimately knowledgeable and understanding of the condition. I felt excited and hopeful, so I put my trust in them and made plans to spend a month getting treatment in Colorado.
The physical therapy treatments I received in Colorado were very important for recovery. But more crucially, I used this time to learn as much as I could about pudendal neuralgia. The more I learned, the less fearful I became of what I was experiencing. Understanding what was happening to me allowed me to change my narrative. Now I knew how to recover and avoid injury in the future, but more importantly I could reconcile what had happened to me and speak about it to others. This may seem simple, but it was the most significant part of my recovery process. I could now tell myself and my peers, “Here’s what’s happening to me and here’s how I’m going to fix it”.
Kate's Personal Outcomes + Message
The journey to recovery has had its ups and downs. While I know I’m progressing, it can be hard to be patient. Recovery is taking time, focus, a good support network, and a very positive mindset. Honestly, sometimes it’s exhausting. It can be easy to dwell on the occasional setback, but I try to focus my energy on trusting the process and staying relaxed. I’ve seen major improvements in daily symptoms, and I believe that I can make a full recovery.
I’ve realized that getting back on the bike will also require time. I was ready to dive headfirst into my old routine as soon as I started feeling better. I learned quickly that this only leads to pain, tears and soul-crushing disappointment. I’m currently riding indoors a couple days a week and sticking with that for at least a month. Eventually I’ll do short outdoor rides and build from there. I’ve also found that it’s important to eliminate all social pressures and obligations that might require me to ride. I’m not signing up for any races and not joining any group rides. I’ve considered eliminating social media and exercise tracking aps. If I follow this slow approach and build a great foundation, I will be able to have a successful future as a cyclist.
Throughout this whole process, I’ve been both shocked and frustrated by the lack of good information available to cyclists. Why isn’t anyone talking about this? How can we educate cyclists so they can mitigate the risk of injury and identify early warning signs if an issue does arise? Pudendal neuralgia is not only physically distressing, it also is damaging to your mental health and your personal identity. The condition is both avoidable and treatable, so we must try to reduce future incidences and help those that are in distress.
We need to address pudendal neuralgia in the cycling industry by focusing on three key areas:
Communication: Spread the word about the condition. Cyclists should be familiar and comfortable with the name “pudendal neuralgia”. Create a safe environment where people are confident enough to speak up if they’re experiencing symptoms.
Education: Push for more education around pudendal neuralgia and have it be readily available to cyclists. This should include information on symptoms to watch out for, who is at risk, why the condition occurs, how to treat it, where to find local specialists, and group support for those dealing with pudendal neuralgia. Educate all bicycle fitters to be aware of the condition and be able to speak to it while conducting fit.
Product: Examine how current bicycle products impact pelvic floor health. Leverage existing products to offer safe and viable solutions for cyclists at risk. Continue to improve design of future bicycle products to mitigate occurrences of pudendal neuralgia and other pelvic floor dysfunctions.
Pudendal neuralgia should no longer be unfamiliar to cyclists. Through awareness and education, we can reduce occurrences of the condition and give hope to those currently suffering.
Written by: Kate Quay (@katequay)