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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

Don’t keep riding through saddle pain


You’re tough. You’re a cyclist and suffering is your pride and joy. This is an area where pain is NOT ok. Bike fits can be expensive but they’re crucial to ensure you’re staying healthy. If you’re experiencing pain that isn’t muscular (pain that feels like burning, shooting, aching, tingling), stop before things get worse and get a professional fit. Tell your fitter all the symptoms you’re experiencing, even if you consider them embarrassing or uncomfortable. Don’t be afraid to advocate for yourself.




Don’t panic


Stress and anxiety will heighten symptoms of pudendal neuralgia, so if you do in fact have it, panicking will make you feel a whole lot worse. This is much easier said than done, but seriously, try to relax. You will find answers and you will be fine. Meditate, learn to relax your body, take CBD, do whatever you need to do to chill out.




Don’t try to self-diagnose through the internet


When you search the internet about health issues, it will lead you down many dark holes that usually end with “you have cancer”. Don’t do it. Searching the internet can cause unnecessary stress and anxiety, which will exacerbate your symptoms. Seek out a medical professional instead.





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

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 After You've Been Diagnosed

Don’t keep riding through saddle pain


You’re tough. You’re a cyclist and suffering is your pride and joy. This is an area where pain is NOT ok. Bike fits can be expensive but they’re crucial to ensure you’re staying healthy. If you’re experiencing pain that isn’t muscular (pain that feels like burning, shooting, aching, tingling), stop before things get worse and get a professional fit. Tell your fitter all the symptoms you’re experiencing, even if you consider them embarrassing or uncomfortable. Don’t be afraid to advocate for yourself.




Don’t panic


Stress and anxiety will heighten symptoms of pudendal neuralgia, so if you do in fact have it, panicking will make you feel a whole lot worse. This is much easier said than done, but seriously, try to relax. You will find answers and you will be fine. Meditate, learn to relax your body, take CBD, do whatever you need to do to chill out.




Don’t try to self-diagnose through the internet


When you search the internet about health issues, it will lead you down many dark holes that usually end with “you have cancer”. Don’t do it. Searching the internet can cause unnecessary stress and anxiety, which will exacerbate your symptoms. Seek out a medical professional instead.





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.

Tips & Advice