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Before You've Been Diagnosed

Maybe you’re experiencing some abnormal saddle pain (sensations like pinching, burning, numbness). Or maybe you sometimes have alarming symptoms off the bike (pain with urination or arousal). Maybe you’re experiencing a myriad of other strange symptoms that you don’t quite understand but you know something is wrong. What do you do?

Things To Do Pre-Diagnosis

Set up an appointment with your primary care physician


It’s always good to check in with your primary care physician before seeking out help from specialists. Although they may not be well-versed in pudendal neuralgia specifically, they can act as your health care hub moving forward. They will be able to help write prescriptions or referrals and recommend specialists as needed. Important: Make sure you share that you’re a cyclist with all doctors that you see for this issue as it may be a major contributor to your symptoms.




Write down all your symptoms


Try to include frequency and severity of each symptom, in addition to activities that aggravate your symptoms if possible. This will help you get a better understanding of the scope of your issue. Bring this document to all your future doctor’s appointments. This will ensure that you communicate all the crucial information to your doctor and they can easily reference it throughout the appointment.




Communicate to your friends and family


Losing the ability to ride your bike, even for a short period of time, can be incredibly devastating. Bike culture tends to be “all in”, meaning cycling often dictates your social network and much of your free time. If you aren’t riding, you lose more than just your form of exercise. You can feel cut off from your world and your friends. Find a way to communicate to your friends and family what you’re going through. This doesn’t need to be an explicit discussion about your symptoms. It can be as simple as saying “I’m dealing with chronic pelvic pain”. If they want more specific details, then they’ll ask. How much you share is up to you. Don’t be ashamed of what you’re going through – learning how to speak about it is so important. Another recommendation is to try and find ways to feel less disconnected from your friend group. If you usually ride with them on the weekends, maybe get dinner or drinks instead. Go for a hike. Get coffee. Host a game night. Whatever it is, you don’t need to lose your social network just because you aren’t riding.





Things To Avoid Pre-Diagnosis

Set up an appointment with your primary care physician


It’s always good to check in with your primary care physician before seeking out help from specialists. Although they may not be well-versed in pudendal neuralgia specifically, they can act as your health care hub moving forward. They will be able to help write prescriptions or referrals and recommend specialists as needed. Important: Make sure you share that you’re a cyclist with all doctors that you see for this issue as it may be a major contributor to your symptoms.




Write down all your symptoms


Try to include frequency and severity of each symptom, in addition to activities that aggravate your symptoms if possible. This will help you get a better understanding of the scope of your issue. Bring this document to all your future doctor’s appointments. This will ensure that you communicate all the crucial information to your doctor and they can easily reference it throughout the appointment.




Communicate to your friends and family


Losing the ability to ride your bike, even for a short period of time, can be incredibly devastating. Bike culture tends to be “all in”, meaning cycling often dictates your social network and much of your free time. If you aren’t riding, you lose more than just your form of exercise. You can feel cut off from your world and your friends. Find a way to communicate to your friends and family what you’re going through. This doesn’t need to be an explicit discussion about your symptoms. It can be as simple as saying “I’m dealing with chronic pelvic pain”. If they want more specific details, then they’ll ask. How much you share is up to you. Don’t be ashamed of what you’re going through – learning how to speak about it is so important. Another recommendation is to try and find ways to feel less disconnected from your friend group. If you usually ride with them on the weekends, maybe get dinner or drinks instead. Go for a hike. Get coffee. Host a game night. Whatever it is, you don’t need to lose your social network just because you aren’t riding.





After You've Been Diagnosed

You’ve seen your doctor and they believe you have pudendal neuralgia. Maybe they refer you to a pelvic floor specialist or maybe you find another doctor or PT on your own. You’re starting to get treatment and are wondering “When will I feel better?” and “When will I get to ride my bike again?”. Here are some things to keep in mind during your recovery process.

Things To Do After You've Been Diagnosed

Try to relax


Relaxing is hard to do as an athlete but it’s extremely important. Relaxing doesn’t necessarily mean sitting on the couch more – it’s a combination of finding time to quiet your mind as well as your physical body. Learning how to relax will allow your nervous system to do its job properly, rather than running full steam ahead 24/7. Once you start building relaxation into your routine, try to include diaphragmatic breathing and meditation which are important to the PN recovery process.




Seek out mental health professionals


Pudendal neuralgia is emotionally and mentally devastating. You’re experiencing daily physical pain while having to give up your identity as a cyclist, all without being able to clearly communicate what’s happening to those around you. This creates a perfect storm for depression, anxiety and other mental health issues. Mental health is crucial to the recovery process, so it’s important to prioritize this as much as you’d prioritize the health of your physical body.




Find something you love to do


If you can’t ride your bike, find something that you love to do that will fill that space. It doesn’t necessarily need to be a physical activity; it just needs to be something that gives you purpose and brings joy to your life. This will help your mental health during the recovery process and give your body and brain a much-needed outlet.




Put in the work


Recovery from pudendal neuralgia is a long process that requires work, focus and dedication. There is no miracle cure that will fix you – in order to recover, you need to address multiple aspects of your life (mental outlook, stress levels, breathing, sleep, posture, muscle & strength imbalances, and more). Once you have an established medical care team, leverage them to figure out what your personalized routine looks like. Dedicate anywhere from 15 minutes to 1 hour (as your schedule allows) each day for recovery work. It seems like a lot, but put it this way: you’ve already proved that you can be dedicated to something because you are a cyclist. Cyclists not only spend hours and hours on the bike, but they also focus on strength training, core work, stretching, nutrition, training plans, and more. Take the energy and focus you have for riding and apply it to recovering from pudendal neuralgia. Make recovery your passion.





Things To Avoid After You've Been Diagnosed

Try not to define your life by your pain


When you’re living with any type of chronic pain, it’s normal to start viewing your life in terms of how much pain you’re experiencing. The first thing you do when you wake up is ask yourself “how much pain am I in right now?”. You do a quick body scan, come up with a number, and then start your day. It’s typical to repeat this process multiple times throughout the day. Your life and actions become defined by how much pain you’re in or how much an activity aggravates your symptoms. This is completely normal and reasonable when you’re living with chronic pain. But the more you focus on something, the more aware you become of it. This means you’re encouraging your brain to always consider your pain, even when it may not need to. Letting go of this habit will help by allowing your brain to focus on other things besides your pain.




Don’t dwell on the ebbs and flows of recovery


Recovering from chronic nerve pain takes a long time and is filled with many highs and lows. You’ll have some great days followed by some bad days. The challenge is trying to keep a positive and calm outlook on your recovery. The goal isn’t to shut out emotions - you should allow yourself to feel the emotions of the recovery process. But don’t allow yourself to dwell on setbacks. If you’re having a bad day, just say “I know this is a bummer and it’s ok to feel a little upset about this. But I’m ok and having recurring symptoms is normal. I’m going to mentally relax and try again tomorrow”. When you allow yourself to let go of the bad days, you’re aiding in your recovery. Getting stuck on bad days can make symptoms feel worse, so learning to embrace the ups and downs will help a lot in the long run.




Don’t give yourself recovery deadlines


The recovery process is slow. Understand that it’s going to take time. Don’t set any expectations for yourself about when you’ll feel 100% better or when you’ll be able to get back on the bike. Creating potentially unrealistic deadlines and then not hitting them will feel devastating. You need to do everything in your power to keep your brain both positive and calm during your recovery process, and that includes not putting pressure on yourself to recover quickly.





Life with pudendal neuralgia is inherently challenging. Between navigating the healthcare system, managing physical symptoms, and grieving over the loss of your sport, it can feel overwhelming. There is little information on how to manage this process as a cyclist. This tips & advice section was created with the goal of providing a generic road map of how to manage life before and after your pudendal neuralgia diagnosis.

Please note that these tips & advice are based off personal experiences and should not be substituted for professional medical advice. It's advised that you speak with your medical care provider before changing your daily routine or adjusting your approach to recovery.

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