Cyclist’s Syndrome / Pudendal Neuralgia, recovery advise and how to move forward?

Back at the beginning of year I got a really good deal on a CycleOps Hammer as they were making room for the new model. I had always been pretty fit and cycling regularly, but with the trainer and the discovery of TrainerRoad I’ve never been stronger.
As we all know, and as you’ve said in the pod-cast. Fitness is like a new toy and you really can’t wait to play with it. Along those lines I’ve been pretty steady maintaining mid-volume plans and then doing some larger road and gravel rides on the weekends.
Over the last couple months, i started developing some pain in an area that was only meant to be treated nicely. I had a proper fit done and have tried saddles to take the pressure off, but the problem culminated after a century ride a couple weeks ago where I find myself pretty much unable to do anything active without pain. Looking at my symptoms I’m pretty much 99.9% sure it’s Pudendal Neuralgia (also lovingly referred to as Cyclist’s syndrome). EDIT: I am seeking medical advice from professionals as well and am not seeking TrainerRoad advice in lieu of proper medical care, but to compliment it.

It’s a bit surprising to me that this doesn’t come up more, as I definitely don’t train as much as many of those in this community who can maintain high-volume plans without issue.

My questions are, what are your takes on this issue and have any of you experienced it? And if so, what recovery techniques did you go through to get yourself back on the bike? Lastly, how long did the recovery take? I’ve been excercising 5-6 days a week since I was 17 ( I’m 38 now) and the last couple weeks have been maddening as I watch my fitness melt away…

Thank you all so much for everything you guys do. Great product and great podcast. 15 stars!

-Terence

I don’t have an answer, but you do have my sympathies!

Interesting issue, but what I don’t see in your comments is any review by a physician.

  • For anything that seems as painful as this, I think that should be your starting point.
  • Self-diagnosis can be a start, but also potentially misleading and not at all correct.
  • Let a professional hear your issues and make a proper diagnosis. Then they can give you options and direction that is hopefully better than what you may receive with a personal assessment.

I appreciate that, and I’ve made some appointments and am going that route of course. Appointments are weeks out and I’m curious what other experienced cyclists have to say, especially since knowledge is sparse for this topic, even in the medical community.

Don’t worry, I’m not entrusting my health to the those on the internet. I’m more looking for anecdotal experiences from like-minded individuals who might’ve gone through this as part of training, and who might be able to share mistakes they made, things that worked best, or things they would’ve done differently.

Adding an edit to my original post.

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Yes, I have lots I can share with you. I had to take 3 months off last year and have only recently started racing again. To give you some hope it may only be pudendal nerve irritation. The details I’ll have to go into are quite personal so if there’s any way of chatting offline I’m happy to share my experiences.

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PM sent, thank you so much.

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I just turned the corner with this. Symptoms started September '18. Got REAL bad and diagnosed (7 doctors later) in May… PT began 3 weeks ago and I had my first real bike ride (with an extremely odd saddle) since diagnosis today. For the first time in months, I’m sure I’ll return to racing in 2020. Feel free to PM. I suspect this is more common than the literature suggests and would love to see a real epidemiological study done.

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I would like to add that I was doing high volume TR plans and seeing results (read: podiums) I had never seen before in the spring which made taking time off really hard to do but it has been absolutely necessary. If this is truly what you’re dealing with, swimming will be almost your only option for awhile (my PT allows the elliptical too but… ugh)

Take this as an opportunity to get really proficient at riding out of the saddle!

I’m curious because I think I finally found what I need to do with my core and pelvis to keep all pressure off the fleshy bits but I assume you are putting all your weight squarely on your sit bones and you know exactly where on your sit bones you are sitting? Is it the forward (red), middle (yellow), or rear (green) portion of the sit-bones?

sitzen__entlastungskanal--1
(Colored annotations are mine.)

As far as I can tell, the safest position for all the nerves in that area is the rear (green) position but it does take active effort to maintain at least in my experience. Especially before it was a habit, whenever my core tired my pelvis would rotate forward to the middle (yellow) position and eventually my nether regions would get sore or numb. Since then I have strengthened my core and can maintain the green position indefinitely. I will only resort to the middle (yellow) position when I’m in an extreme aero position but even then I make sure relatively little weight is on the saddle and not for extended periods of time. This all assumes of course, that you have the correct saddle shape and bike fit for your anatomy.

I’m no expert though and I would certainly be interested to know if you can develop problems even when in this rear (green) position.

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Glad to hear you’re on the mend. I just started PT last week and I’m back to being able to do some off-the-saddle exercise (elliptical, light running). It’s definitely one of the more frustrating things I’ve gone through both in the discomfort but also the general lack of understanding in the medical field. It’s difficult to get a proper diagnosis as it’s one of exclusion. “Not your prostate, not entrapment, not cancer, guess you have this…”
It seems like common denominator among people I’ve spoken to who’ve recovered well is definitely finding a PT well versed in the anatomy of that area.
I agree a proper study really is needed.

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I do think seating position and possibly saddle choice may have contributed at the beginning of this. But another huge contributor is hypertonic pelvic muscles, which can be a result of your own psychological/physiological disposition to “clench” while under stress both on and off the bike. That being said, I think there’s no question that working on my core work, and form both on-and-off the saddle could be a huge benefit. Thanks for commenting :slight_smile:

Yeah, I think that position and saddle choice is definitely what precipitated all of this for me although I think the continuing symptoms (even 2 months after my last ride) are definitely the hypertonic pelvic muscles compressing the nerve. I was skeptical at first but the physical therapy to relax the pelvic floor is very rapidly improving things.

I was on a saddle too narrow for my sit bones and actually switched to an even narrower Fizik saddle this spring. I tend to slide forward on the saddle when working really hard which put even more direct pressure on the perineum. For my last ride before diagnosis, I actually only did 30 minutes on a trainer but I went numb and immediately after the ride I was on fire. Pain had gone from an average of a 2/10 to a 6/10 and took weeks to subside.

@SexyCoolguy does your PT think you’ll more or less always have some degree of symptoms? My urologist and PT both seem to. The urologist is sure I’ll get back to training and racing but with minor discomfort from time to time. The PT is more circumspect about what activity level I’ll have but definitely thinks I’ll need to always do my stretching and hip mobility work before and after rides.

I would also be curious to know what level of lingering symptoms (if any) @ValeCyclist has after all this time…

Well you may need a physiology website for the answer. The one main lingering symptom is a strange one and hard to describe however it ‘feels like’ either the bulbocavernosus or ischiocavernosus muscles are involuntarily contracting, as I say it’s hard to describe but it feels like a rippling feeling, it’s not sore and it doesn’t feel like cramp as you know it. I’m able to do 2 hour turbo sessions pain free now and am currently on the bike 6 days a week.
I believe my pelvic floor tension is fully resolved now, I have this lingering perineal feeling but no numbness or pain which considering back in September of last year I was thinking I may never ride a bike again I am truly thankful.

The stretch I do which seems to get to the affected area is for levator ani muscle, it’s very basic. I also stretch piriformis and rectus femoris. The rec fem is the only quad muscle which attaches to the pelvic girdle so if it’s short it will pull the pelvis out of neutral. When I first started doing this one the outside of my knee was in agony, I found out this was the ITB battling for superiority, it’s just a matter of persevering and now I can stretch that pain free. Rec fem stretch is as easy as hooking one foot up behind you, 90 degrees or higher (foot on the back of a dining table chair type height) and the maintaining an upright posture and pushing your hips forward, again very basic but effective.

Oh, one other thing, the physio I saw (UK based remember) who I believe helped me more than anyone is Gerard Greene, he’s on Twitter as @gerardgreenephy so if anyone wants their PT to contact him ref my treatment I’m sure he’d help.

Well, I’m glad that I’m getting better, @SexyCoolguy is starting treatment, and that things have gone so well for you, @ValeCyclist. Until now it was very hard for me to find success stories… It seems like the most vocal on bike forums and in other places are the people that are in really bad shape and went years without diagnosis. A lot of the information out there is pretty depressing.

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This is true, in a few places I was told to sell all of my kit as I would never ride again!! I have no doubt there are bad cases out there, especially in women who maybe aren’t cyclists at all.
As you and I have discovered, obtaining an accurate diagnosis is exceptionally difficult, even to this day nobody has actually been able to say to me “this is what is wrong”…I’ve worked it all out by myself.

I haven’t been to a Urologist yet, and hopefully won’t need to if physical therapy goes well. My PT is hopeful about getting me back to being able to ride like I was after a couple months of doing proper stretching and teaching myself how to “relax” the pelvic area. I suspect it’ll be something that I’ll always have to maintain, and be super mindful of. As I get older I find I’m just adding more things onto the “maintenance list”, nothing seems to just recover all the way. The worst thing you can do is “muscle-through” the discomfort because you can you can knock yourself out of commission for days or even weeks.

I definitely hit that same dishearteningly place doing research. I do think people let it go way too long without addressing it, due it it’s embarrassing nature. Also, as a man, all pelvic floor related resources are understandably aimed at women so there is definitely a contingent of “alpha-types” who would sooner not ride their bikes again than deal with this issue head-on. I’m optimistic, but it is definitely and slow process, and I have to keep reminding myself it’s going to take a long time and to be patient. Even as I write this, I’m fighting off the urge to get on the trainer despite my PT telling me to hold off for now…

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Yeah @SexyCoolguy , don’t do it (don’t get back on the bike right now). I’ve taken 3 months off the bike and that’s no big deal considering how serious of a medical condition this is…

If you just can’t help yourself, I’ve been able to get back to riding just this week with a SQLab 600. It’s extremely awkward, and I had to get a shorter stem with a steep rise and basically set my road bike up like a cruiser but it works and I can still ride reasonably fast (with the help of a friend’s draft). More importantly, I’ve had absolutely no flare ups in pain after rides. It might be early enough for you that just pedaling increases tension in the pelvic floor. Who knows. Use caution.

Eventually, I’d like to be on a more traditional saddle (that’s anatomically correct this time) but I think that’s going to be a few months.

Lol, i resisted :). Luckily I can do fairly reasonable elliptical and running workouts at this point without discomfort.

I have an ISM saddle waiting for me, but I might have to check out the SQLab saddle (at least for on the trainer) if it doesn’t work out. I’m definitely going to make sure I take it slow, as my last flare up a few weeks ago was an “eye-opener”.

Would you guys who have had success with physical therapy mind sharing some of the movements and stretches that have worked. I was training on a frame that was too large for several months and I have not been able to mitigate the problems. I’ve been dealing with numbness, however it doesn’t start until the day after or even two days after a long workout even with a correct bike fit. To me itsounds like an irritated nerve and/or inflamed pelvic floor muscles but I’m not sure. I’ve seen a few drs without success and was told to hang up the cleats