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

Ask a Cycling Coach Podcast
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On thing that jumped out at me on your note was the distances. My PT, who is experienced with PN patients, has insisted that I keep the saddle time low and very slowly start building it back up. He was clear that the measurement is saddle time, not miles.

He said start at 30 minutes, preferably outside, no more than every other day, ideally for a couple of weeks. Flat routes, no climbing. Keep cadence around 85 rpm, to minimize bouncing. As that gets comfortable, add 5 minutes. Repeat the cycle.

He emphasized the outdoor rides, as there’s more variability and the body moves more than on the trainer.

Given the 2 years of hell I went through, I’m listening and following his instruction. So far so good. My symptoms have changed a bit, in a good way – if there’s discomfort, I notice it immediately (wasn’t true before) so I can adjust my position. I may be a bit tired and sore that day, but it usually passes by the next day. If needed, I take an extra day off.

It’s been great to get back on the bike and I don’t want to lose that, so I’m staying diligent to my PTs instructions.

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@MrBirchling @Rumpus great to hear your progress and wins on the bike. It’s good you have an expert to guide you with a pacing plan.

Looks like a lot of people have left this thread, which I will take as a good sign that people recover and move on with their lives.

I try to gain perspective that this is temporary and the body can heal. One of my family members broke their leg and it took months to heal. It was in a cast and everyone accepted it would take some time but the body would do its thing and repair the bone. He is back to full sports and routine now but it took 6 months. Nerves are the same, they take months to heal too but it’s more invisible. There is no cast, no expected timeline.

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I also agree about the saddle time. I had a couple of weeks of no cycling and then the past 2 days i’ve done 1.5 hours each. I make a point of standing up every now and again to stretch a bit and get off the sit bones. I feel slight aggravation today so it’ll be a run day instead of a bike day.

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Good to hear that you’re back active @rcc and about progress generally @journey and @MrBirchling

Re saddle time, ive had mixed messages from the care team (saying that makes me feel like an NBA athlete or something :rofl:). My sports med doc didn’t give any restrictions (though I truly think I was the one who told her what condition I suffered from rather than the other way around, largely thanks to this thread.)

My pelvic PT was more aligned with what you guys @MrBirchling and @RCC are saying, lower time than what I’ve done—she prescribed like 20 minutes and gradual build, so I about doubled that on the 10 mile ride and the 20 mile ride was not a gradual build. But she was also saying as of a few weeks ago that I could reasonably target Unbound (100 mile) at the beginning of June which obviously does not track (and which I will most decidedly be deferring).

My fitter/PT/coach (he’s not my actual coach, but you get the idea) said simply that getting back on the pedals is never a bad thing if the body is feeling right. (He also emphatically advised that I be deferring though.)

I took that combination and kinda came out with what I’ve done. I wanted to go long enough to retrain my brain that the body can do this and not to fear the saddle, but not blow things out. When I felt good for a few days after the 10 I just went out and did 20 without really planning it—it was a nice day, lakefront was beautiful, honeys was out, was feeling good, so I went with it. (But damn, my HR was way outta whack with my power!! Fitness has flown the coop.)

I get small waves where I’m aware of tightness and get a bit of a tingly feeling, but I think it was brought on more by doing my body weight resistance routine than by the riding. Experienced it last night but then went and played a soccer scrimmage with a bunch of 8 year olds (I’m a “coach” for both of my sons’ teams) and it actually made my body feel better (mind body for you?? I’m surprised my leg didn’t fall right off with some of the shots I took.)

Anyhooo, I’m growing more and more convinced, as has been discussed elsewhere on this forum, that the initial injury was SI joint impingement and over-tight psoas. Combined with stress/anxiety about life shit, excessive time on the trainer with a suboptimal saddle and bike fit, this lead to pelvic floor freaking out. When I’m doing stretching I can really feel things most prominently in my right hip and propagating to my right groin. So I think my split squats and abs work can sometimes cause a bit of strain in this department, activate the pain feedback loop, and bring on symptoms, even when a 20 mile ride had no impact. Still early days so I’ll keep ya’ll posted.

Damn I just wrote a lot

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@Rumpus thats a positive update, sounds like symptoms have improved a lot.

May - i am about 80% there, some more strengthening to do and nervous system recalibration. Seeing improvements each week and reaching new milestones. So good news is still healing and getting better slowly.

June - Expect it to take longer than you think to heal. Many weeks and months to reach healing goals. I am just on 85% there now with no meds.

July- I am about 90% there now. June was breakthrough month for healing and pain now minimal <2 and manageable.

August/September - baseline 1/10 now so more hopeful. Over 90% recovered but wouldn’t say back to normal yet - this may take more months. There is still an awareness of injury and some caution. Yet my mindset and mood is better, no longer chasing zero symptoms, trying to enjoy improvements achieved and live life to fullest as best I can.

October - still improving every week. 95% there, very little daily impact now. Still need to be cautious with some things, hoping tolerance will continue to improve. First time have belief in full recovery by end of this year. If you’re reading this, recovery is possible, a lot of positive stories on this thread.

December - mostly recovered, somewhat burnt out after being in flight/fight mode for so long. Final piece was reducing fear around this condition and permanency.

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I’ve been good since correcting my saddle straightness and easing back into it. I’ve also been applying chamois cream more posterior.

Have you had a recent bike fit? Saddle height is probably a big factor. Maybe it would be worth going in for a Fizik custom saddle fit where they pressure map your perineum?

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Update, just in case it’s helpful. IIRC, I had one terrible (unbelievably unbearable) flare-up of what I think was pudendal neuralgia, and I think I detailed it in this thread. I recall it lasting for maybe weeks but not months?

Since then, I think I’ve had one other tiny flare that lasted a couple days.

I’ve also had some “warning shots” that something in the same bodily region have fired over the proverbial bow. Little twinges or sharp zingers that remind me of that one horrendous flare I had. The warning shots are noticeable enough that I immediately stop or back off whatever I’m doing.

Here are the things that seem to be triggers, (sorry some are very, VERY obvious, but I’ll err on the side of comprehensiveness and accuracy regarding when I get a zinger because for those of you who have had longer term stints with this, or more recurrent issues, you deserve what little info may helpful and this seems like a rational crew of pragmatic folks that won’t over-limit their exercise out of fear. Anyway, here’s the list:

  • Non-splitter saddles. If I feel a zinger and I happen to be stupidly risking riding a non-splitter saddle for some stupid reason, I get off the bike and do not look at it, touch it, or imagine riding on it ever again. :slight_smile:

  • Some particular valsalva scenarios and not others, in particular:

  • Straining while on the toilet. Hemorrhoids usually are an earlier warning sign but sometimes pudendal neuralgia zing beats them to the punch.

  • Heavy full squats. Especially pause squats. Especially full depth jump squats. (former bobsledder here… I just like doing them. But I listen carefully for any signals from down under and it’s always a full stop, workout over, when I feel anything)

  • Stiff legged deadlift, when heavier.

That’s the list.

I’m a fortunate one, I think. My symptoms are very intermittent. I’m utterly religious about a “stop and do not pass go” approach if I feel even the slightest twinge from the pudendal region. I think I’m more just lucky (and exceedingly grateful because it’s awful).

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Interesting observations.
I found the same - deadlifts, Cossack lunges fire it up. And so do the recommended stretches like happy baby.

I cannot look at my trainer (says the gal who used to ride Uber Pretzel on Zwift and round it out to a 100 miler cause of Ego). My $$$ saddle makes no difference, I can ride only heavily lubed up with lidocaine and then I have to pay back for it for days after the ride.
I think this is just how I am going to be from now, this is my new reality - my underparts burn. And I try to be stoic about it.

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Quick update – continue with 2 steps forward and 1 step back. Been able to ride but must continue stretching. non-linearity of recovery is for real.

Also managed to do a 3 day regatta trimming headsails on a J70 which involves alot of relatively aggressive hiking (siting out over the side of the boat). Was very concerned about this and potential for flare-up, but the distraction sailing provided actually made me feel better (hello mind body).

Have become 100% convinced that at least a component of the acute injury for me was hip impingement. As I’ve said before, when I stretch I feel it mainly in my right groin, obturator internus, etc. Have added soft tissue work (foam roller, sitting on tennis ball) to work hip specifically. Interestingly, when I went to find hip mobilization exercises and stretches I found a yoga routine that, lo and behold, was almost EXACTLY what my pelvic PT prescribed. So I dont think its a huge stretch (no pun intended) to say hip = pelvis.

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Could you share that routine? Is it something on the YouTubes?

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@LittleGardener You should really see a pelvic floor specialist. The basic issue is that nerves don’t stretch the way muscles do. You likely have some sort of nerve entrapment but the specialist will be better able to determine that.

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I don’t disagree @JSampson that (a) you can’t stretch nerves, and (b) you should definitely consult medical professionals when suffering from this.

However, everything I’ve read and learned about this condition (set of conditions?) suggests that it is frequently an issue of muscular hypertonicity/imbalance, whether in the pelvic floor, hips, lower back, etc. So while it is true that you can’t stretch nerves, you certainly can relax muscles in the area that are causing nerve irritation. This is what the majority of the therapies are directed toward.

My pelvic PT also has me doing nerve “glides”, the idea there being to mobilize the nerves in the sheath.

@LittleGardener, try to stay positive. Rest, stretch, repeat. Listen to your body and don’t press too hard.

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Well, one good thing I can say is that I suffer from this for 2 years now, but lately it got a lot better even to a point where I don’t think about it most of the time. And I didn’t do much lately, I guess time is also an important factor…. I can even get on the bike again and it is not worse after it.

But let see how it evolves in the next months.

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Latest update. More clarity, some progress, more to come.

My symptoms over the past few months seem to be abdominal/digestive system related, but still affecting the bladder. Got appointments with a gastroenterologist. Colonoscopy was clean. Really increased fiber intake, with supplements, and added a laxative. Latest testing indicated I have pelvic floor dysfunction. Waiting for a referral to a physical therapist.

I’m hopeful for the first time in a while. Understanding a root cause is encouraging. The supplements are helping, to the point I only woke up 3x last night, the first time in over 3 years.

Fingers crossed but I feel like it’s finally heading in the right direction.

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I owe an update. I remember when I first found this forum noting how the OG OPs were talking months to years recovery, and some would return after periods of 6+ months, saying that they had experienced flares, etc. Again this turns out to be spot on with my experience (as this thread has tended to be). I got back to riding 40 to 50 miles with very little symptoms ever. Then got Covid. Got lazy about stretching, foam rolling, pressure point release, and boom. Once again I feel like it started in my hip and, as I stretch, that’s where I feel at the most. I’d say the upshot is: don’t get lazy with stretching! Getting better again now. Paused on the bike and back in the recovery/maintenance routine. I think I’ll just always need to do the stretching routine moving forward, which is probably a good thing for a number of reasons.

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