Pudendal Neuralgia (PN)

This section is near-and-dear to my heart as I will go into some serious depth about WHAT PN is, HOW it happened to me, and answer some questions you may have about this condition in the FAQ section at the bottom of the page.

Before we get started, it's important that we FIRST establish a common definition so that we are always talking apples to apples and oranges to oranges. Curiously, there is no wikipedia page for PN (there is one for PNE which we will differentiate between); but before we talk conditions let's first get clear on what and where the pudendal nerve is located:

(images courtesy of wikipedia.org)

Pudendal Neuralgia (PN) - Pain or irritation to the pudendal nerve. Both guys and girls have a pudendal nerve and when we mess with it (poor cycling position, a hard fall, and so so so many other ways we do this <- dont worry we will get into this too!), we can cause pain (neuralgia is neuro (nerve) and algia (pain)).

Pudendal Nerve Entrapment (PNE) - A derivative of the above condition but far more painful. This is when there is the pudendal nerve is actually trapped in scar tissue (kinda like carpel tunnel syndrome); repetitive trauma or severe inflammation causes scar tissue which the pudendal nerve binds to; from what I gather, this is painful AF and sitting down/standing up/doing nothing is 10 out of 10 pain. 

With respect to the two conditions above, PN is far more likely in people than PNE. My urologist, Dr. Jerome Weiss, has a kick-ass explanation of all this (in addition to other pelvic pain conditions) that I strongly suggest you look at. 

Ok, now that we are clear on definitions, learning our A's and B's of anatomy - and in particular, the pelivc area - let me explain my story in detail about how a lot of this began for me. 

For much of my cycling 'career' (air quotes because I haven't been doing this sport very long), I rode road bikes and was able to do so for hours on end, no pelvic pain whatsoever.  Then, as a track cyclist, I was introduced to aero bars, bad-ass looking TT helmets, and skinsuits that cost more than Sidi shoes; however, the efforts were relatively short in nature (nothing more than 5 minutes) so cycling in a very aggressive position for long periods of time wasn't really an issue. 

Fast forward a few years to 2016 and I started to get into the world of multi-sport and in particular, duathlons (run-bike-run) and triathlons (swim-bike-run). Being in multi-sport meant for me that I had to have a TT bike that was as aero as possible while still giving me the freedom to deliver the #WattageBazooka that I knew was possible. Little did I know this would be the beginning of an 11-month struggle with what I now know is PN. 

As I explained in a previous section, I began experiencing pain in my right testicle and lower back which I associated to a sh*tty bike fit and poor saddle selection. What ensued next is me practically becoming a saddle-salesman: I literally bought 15-odd saddles so before you begin to tell me 'Oh, Alex, have you tried ____________ saddle?' - chances are high, yes, I have.  Going through all of these saddles something curious happened that I noticed: riding a road bike was ok, but riding a TT bike caused me pain. Why is that? What I came to realize was that yes, the position I was in was causing compression on my scrotum which was irritating my nerve which led to PN.  But, being an athlete, I was too dumb and stupid to STOP and let things settle down - so I kept going, riding, exacerbating the problem and overall not listening to my body and common sense.

Thankfully, I was born with some brains (gotta think that's why my wife married me!) and began realizing that the problem may be internal; for the longest time I thought that my bib shorts were too loose on me because I kept 'adjusting' so I sprang from some super-comfy Assos and Rapha bibs but nope, that didn't do it either. So what first? I began my phenomenally expensive journey with a trip to my general practitioner. Given his lack of familiarity with the pelvic area, he gave me a referral to an in-network urologist who was very kind and listened to all issues. This led to a series of ultrasounds both on my pelvic area (to check for inguinal hernia and on my testicle area) that concluded nothing (no testicular cancer either). 

The REALLY appalling part was that I was told to 'take some aspirin?' but this was the first time I became familiar with the following two words:

idiopathic orchialgia - pain in the pelvic area WITH NO diagnosis why.

So imagine for a moment you have some pain and that a doctor - someone who had to undergo AT LEAST 12 years of schooling + residency shrugs his shoulders and says 'I got no answer for you'. WTF. I did NOT nor should YOU be ok with this answer. F*CK THAT. You need to be your own patient advocate and realize that the only person that is going to take care of your business IS YOU.

Realizing this was the first step to getting my life back. I began asking questions and doing research on wikipedia and studying anatomy. Note the careful difference here between consulting a forum and wikipedia. In both cases, you are essentially becoming an arm-chair doctor, but reading through forums is all too easy to get yourself trapped in an area you think that may or may not be applicable to your situation; hence, the reason why I kept it strictly 'academic' with wikipedia. Ok, so the first thing I did was a) stop riding and b) sign up for an MRI. I wanted to see if perhaps I had a pinched nerve or even a sciatic nerve that was causing pelvic pain and then referred pain to the back. Given that I was acting as my own doctor, all of this was paid out of pocket.  Here's an image of the MRI scan:

As you can see, healthy discs, so need to look elsewhere!

Given that I am an analyst, the way I think is a process of elimination: what things can we rule out?

1. Testicular cancer? Nope

2. Inguinal hernia? Negative

3. Pinched nerve in the spine? Nein!

4. Could it be a sensitive skin issue?

I never considered that the issue may be a dermatological one so I quickly got a referral to a derm in the Walnut Creek area who said that the skin is fine, there's no irritation and right when I mentally crossed off item 4, the doctor gave me the unsolicited advice of: "maybe you should quit cycling and take up another sport like speed walking or golf!"  Simply put: a life without riding is not  a life worth living. Obviously, this person was making a casual remark because anyone who knows me knows that cycling gave me the gift of health, happiness and made me a better human; NO WAY, NO HOW I am giving up the bike. Again, no one is going to handle your sh*t for you in this life better than you.  Don't settle for less than what you truly believe in your heart and my heart was telling me "YES YOU CAN GET BACK ON THE BIKE". 

So what then?

I remember the moment when I actually found Dr. Jerome Weiss's website on google. The actual search terms I typed were: "testicle pain pelvis east bay" and bam, there it was, staring at me all along.

Reading this guy's website I was sold within 20 minutes. Finally, here was a guy who was saying some things which I knew were directly applicable to my situation; plus he wrote an entire book on dealing with chronic pelvic pain - something that as a fellow author, I can relate to! One thing that really stuck out was this line:

"On average, our patients see 5 different specialists before coming to our office."

Bam, that was me summed up in one sentence. I had seen multiple 'specialists' before coming here and the amazing this was, no one had a clear answer for me. Up until this point I had been prescribed doses of Doxycycline, Levofloxacin, and even a 1 month dosage of Prednisone for the pain and the result was always the same: nothing helped. 

My first question to the doc was 'Doc, WTF is wrong with me?'. He wasted no time in giving me a thorough examination and concluded after internally testing me that I had a mild case of pudendal neuralgia. You're probably asking: how did he diagnose what other doctor's - AKA REALLY well educated and good-intentioned people - could not? The answer is he was the only doctor who gave me an internal examination which - as you probably are guessing - involved some serious prodding in an area which for men, is known as the ass. Remember, I told you I would be 100% open and transparent and this is what comes with the territory. But he was literally ON THE NERVE itself and I was in pain and finally, FINALLY I had an answer: I have pudendal neuralgia. 

When I asked the Doctor why no one else could diagnose this his answer was startling: BECAUSE NO ONE EVEN KNOWS A) WHAT PUDENDAL NEURALGIA IS OR B) HOW TO CHECK FOR IT. Mind you, I had even consulted a neurologist who actually said I to be patient and that I had a mechanical back issue; this person also did not give the green light on a neurogram which could have revealed the PN problem as well.

Now that I had an answer to my condition, I then asked the next question which every athlete asks: "So when can I get back on the bike?" Not for a couple of months is what I was told but that a full recovery was possible if I was able to continue the therapy and see a physical therapist for some pelvic floor work (see the Resources tab). Good news is that swimming was still a green light and so I was back in the pool the next day banging out 2.5k :-)

Fast forward from that point to where I am now, October 2017, and I am slowly but surely getting my cycling legs back. I am terribly out of shape, and my cycling muscles have definitely atrophied; I can only ride for ~45 mins to an hour before I begin feeling some slight (2 out of 10) discomfort but it doesn't last long and I am getting ready to try my luck for a ride over 1 hour. I can honestly say I don't know how long I can ride continuously at the moment - I dare not try a 5 hour ride now, let alone a 2 hour ride. What I can say though is that it's a process and I am taking you along for the ride no matter how good or bad the road is but please know, IT IS POSSIBLE TO GET BACK ON THE BIKE AGAIN. I am living proof that you can do it. How long? I don't know yet but I am on the bike again, albeit, slowly - but this is a start. 

If you have PN or think you have PN, it's not a death wish nor is it a sentence to ride a recumbent bike (no offense to those folks!); you can do this and I am here to tell you I am living through it as best I can. Take heart, if I can do it, YOU most certainly can as well. 

How can I test if I have Pudendal Neuralgia?

YOU cannot do this manually. Recall that at the beginning of this page, we define WHAT PN is; to access those nerves (each of us has 2) you need to see a urologist who will give you a 'manual' test. Unless you get a neuro-gram (an MRI-like scan for the nerves in your body), no eyeball test or ultrasound is going to pick this up.

Are there other websites I can learn more about PN?

Yes, I highly recommend checking out: www.pudendalhope.info/

Of course, there's playing internet doctor which is highly dubious because everyone's journey is unique but you can always ask on numerous health boards and question platforms like Quora as an example.

Do you still experience pain today?

Yes; however, to a significantly lesser degree.  Again, given that pain thresholds vary greatly, at the worst end, things were extremely uncomfortable. There was no shooting pain but there definitely was a dull, constant pain I was experiencing. This has been greatly reduced from an 8/10 to a 1 and sometimes 2/10 on MY 10-point scale. 

Do you take any drugs / medication to help?

Yes. I currently take ONE non-prescription pain-killer called Naproxen. This is a totally safe, totally over-the-counter 'drug' you can buy at your local pharmacist. I usually take 2 per day but I found, when things were really hurting, I was taking 2 per every 5 hours. Of course, there are things that can be prescribed however I never used those things so I don't want to give you feedback if I haven't 'done it' yet.

Do you still ride a bike?

Yes. However, I am not 'back' to my old self (yet!). Right now I am able to ride 1.5 hours, pain-free. Now, given my cycling goals of doing multi-day cyclo-sportive events that are much longer than 1.5 hours, it's safe to say I have my work cut out for me. The truth is, I don't know how long I can stay on my bike except to continually try, test, and learn. Obviously, each day is a learning process and I cannot even guarantee that I can actually participate in these events (let alone finish it!); but I am busting my a** to make that happen. I love riding my bike, that's the plain and simple truth; a life of not riding is one I don't WANT to know.

See a question that you think I can answer? Shoot me a line in the contact page and I will be sure to answer it promptly in a blog!

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