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

For me symptoms started in early May but I of course kept riding (cause that’s what we do) through early June. A century ride finally did me in. I took a couple weeks off, started again, made it worse, the usual. Finally around the time of my original post in July I realized i needed to do something about it. I credit @ValeCyclist for basically saving me on this one, by telling me his story and getting me on the Physical therapy path. I made an appointment and started seeing a PT in late July.

I basically did NOTHING active for the month of August (it was brutal) and got treatments once a week. I worked in some light workouts and running, and eventually was able to get through very light bike rides in early September. Kept things pretty light until mid-october and started a Low-Volume base plan with about 30 watts shaved off my FTP from the spring. This is partially intentional to not hurt myself again, but also because my fitness was hit pretty hard with all the time off. Symptoms are still there a bit, but it’s getting progressively better. I plan to switch to a mid volume build in the new year and be back on track for gravel season.

From late July through mid October I was seeing my PT once a week. I’m now at every couple weeks and might actually take a break after my next appointment and see if I continue recovery without it. I’m very lucky that my insurance covers PT, many aren’t so lucky.

As far as pain, I only had a couple days where I’d consider it PAINFUL. It’s mostly just a general feeling of things just not being quite right down there. Things go numb that shouldn’t and I’d often get a “tight” feeling in the upper rear area that almost feels akin to pulling a groin muscle. I’d also get a tight feeling behind “the boys” that would make it feel like I was sitting on a golf ball or something when I was sitting on a flat surface. It all seemed sort of random and certain symptoms would come and go. One the PT showed me how the nerve pathways work it makes a bit more sense, there’s some seriously complicated shenanigans going on down there…

Hope that helps.

1 Like

@SexyCoolguy wow sounds like you caught things early! I wish I had figured it out before I was straight up horrible all the time for a few months. Instead I was like “a High Volume plan sounds like a cool and normal thing to do…”

Take it easy, do not insist if in pain.
Be sure to have a solid diagnostic.
Go see a pelvic floor PT
Dont read horror stories on the internet, and if you do, well dont pay too much attention, there is hope for sure!

1 Like

+1 on all counts

I think most of the truly horrific stories online are people who have nerve entrapment and are in almost constant un-relenting pain. I think what is more common, and what we’re all dealing with is moderate nerve irritation, There’s hope, I’m looking at new bikes for next season :).

2 Likes

Absolutely 100% agree with your comment that all of us here have varying degrees of nerve irritation, I would imagine a true entrapment would be hugely debillitating and extremely painful.
I have mixed views about whether total rest is better or not, I believe it’s down to ones individual symptoms, I did stop for 3 months to at least give myself chance to heal. I started back with 5 to 10 min rides indoors around 12 months ago actually, I recently experienced a noticeable improvement after a Therawand session (anyone who looks this up is in for a surprise) and my sensations seem to have diminished a little more, still not totally gone but definitely improved.
Anyway, there’s no doubt there are many people out there suffering and us men are still guilty of hoping things will clear up by themselves and don’t want to reveal all to anyone else. Well, if you love riding your bike you’re going to have to put your pride behind you and accept that some if the treatments are something you almost certainly won’t want to talk about at a BBQ :grin:.
Good luck everyone.

Is the pain from this across the pubic bone? I think I had this post ride, last weekend. I was out with the fast lads, on a bike I had fitted myself, and was quite literally “on the rivet” the whole 3 hour gravel ride (no sit bones anchored anyway). Was quite sore that evening, but had passed by the morning. Just stumbled across this thread, as googling on Sunday evening didn’t point me anywhere cycling related.

Never experienced it before on my other bikes, so was planning on a shorter stem/ moving saddle forward - this bike is due to be replaced in the next few weeks and that’s the opposite of what I did when I picked it up second hand. n+1 I’ll be going to a fitter.

I think because of the nature of nerve pain symptoms vary. But for me at least the pain comes in the form of extreme tightness in soft tissue areas. Usually there are other nerve-like symtoms like tingling and numbness. Some times extending down the leg. If it subsided by the morning, I wouldn’t worry too much I’d probably just get that bike fit like you have planned. I found just sitting in a saddle you’re not used to can cause sit bone pain for a ride or two until you’re acclimated to it. The ISM saddle which has been a godsend, was actually pretty uncomfortable/painful the first couple rides because the way you sit on it is so different.

Since I posted I’ve been looking into it more, and think it might have been somewhat coincidental to the bike on reflection, as I haven’t found the symptoms I had listed, anywhere (man or woman) linked to list. It might just have been a lower ab strain from non-bike chores, that the hard bike on top of my weak core exacerbated… Still points to more strength work though.

I think folks are interested in updates every now and then so here’s mine…

I’ve had a couple of false starts with the bike. No worries. I’ll just wait. Since this kind of pain can become permanent even if the underlying injury is gone (look up central sensitization) my plan is to get back on the bike only when: pain is gone completely or pain plateaus for a really long time. I’m still improving so I’m just going to chill out for as long as it takes.

I now have a new urologist who actually has some knowledge of this condition. I also now have an anesthesiologist at the local hospital’s surgery department. This has been huge, and I should have seen him back when this all started. He’s never treated this pain in men before but he’s a great guy and read all the research he could find before he even saw me. If anyone out there is hesitant to go to a pain clinic, don’t worry, opioids aren’t even considered effective at all for this.

The new treatment is a regimen of neuropathic pain meds (gabapentin + Zanaflex) and CBD oil. I’ve also had a single nerve block (short acting anesthesia + steroid) almost two weeks ago. So far this has been the best month for me so far and I’ve actually had a lot of pain free (or just about) days, which is a new experience for me.

I know that the pain manifests differently for folks (stabbing, electric, burning, etc.) so it’s worth calling that out, I think. For me it’s always been prickly or burning skin. I haven’t heard from any other cyclist that has that. Weird, oh well. It’s accurate to say it’s a kind of thermal allodynia as tight clothes and and increases in body heat increase my pain.

To sum up my treatment so far has been (in this order):

  1. Rest from the bike (since about May)
  2. Wedge cushion and avoidance of triggers like prolonged sitting, running, heavy lifting
  3. Physical therapy (6 weeks in July/August) with continuing at-home program (including the dreaded wand)
  4. Gabapentin + Zanaflex + CBD oil (Charlotte’s web full spectrum) - since beginning of December

Since I might be on the pain meds for awhile, and since THC could be detectable in my body, especially if my Doctor has me graduate to cannabis… I’ve looked into the TUE process. In case anyone is interested: gabapentin and the muscle relaxant require no TUE. For cannabis, I filled out USADA’s pre-check form and they contacted me to say that as a non-national amateur competitor (only competing in USAC sanctioned events rather than, say, UCI) I would only need to apply if I have an adverse result. And if I apply in advance they will only process it if I have an adverse result but that with the proper medical history and documentation that a TUE would apply in competition. Also that I should declare it when tested. I would encourage anyone with any similar concerns to check the site and reach out to them on your own.

I pre-registered for my big event back in beginning of 2019. The organizers were kind enough to carry my registration forward to 2020 (July). It’s starting to look iffy but I’m still hopeful.

3 Likes

Keep it up man! Very happy to hear you are on the right path!
No pressure, and remember that flares might happen and that’s ok.

1 Like

Wanted to jump in with my experience with pelvic floor pain and some progress I have made over the past month due to a new physical therapy program. Note that this is my just my personal story and what worked/didn’t work for me may not apply to everyone. I’m a 46 year old male, long time cyclist and my issues started back in May 2019 during an intense period of TR training. I started experiencing pain while riding and then numbness/tingling that lasted days. If I’m honest, the symptoms probably started at least a year earlier when I noticed decreased urine flow (took longer to urinate). My doctor checked my prostate at the time and everything was normal, so chocked that up to getting older, when it was definitely an early sign of pelvic floor tension.

When the acute pain and numbness started my first reaction was that it must be my saddle, so spent way too much money trying every different saddle possible including those that just supported my sit bones. Nothing seemed to work, and interestingly the symptoms seemed to be more related to the intensity of the workout rather than the saddle or even time on the bike. I could get sharp pain within minutes of starting a VO2max session, but only had minor discomfort from an hour long recovery session.

At this point I made the tough decision to stop cycling entirely. Being an exercise junky, I switched to running and quickly found that although not as intense, the ongoing numbness continued. This sent me into full research mode and soon found this forum (thanks for everyone’s candid posts and advice) which helped me properly diagnose the condition (doctors had no clue) and led me to a pelvic floor PT. I started traditional pelvic floor PT in the fall and spent about three months going through the full spectrum of treatments, including regular internal work with a therawand. While I had some minor improvement during that time, I think it was likely more related to a decrease in physical exercise, particularly any sessions with intensity. During this time I continued to research, and was coming to the conclusion that the pelvic floor tightness was likely a symptom of other muscle tightness/imbalance. This was backed up by my personal experience that although cycling started the problem, the issues persisted during running and nordic skiing and intensified as muscle activation intensified.

In early December I came across an online program - DCT for Pelvic Pain. DCT (Dynamic Contraction Technique) is a new twist on a longstanding physical therapy technique involving muscle and fascia release through muscle contraction. The program resonated with me because of my suspicion that my issues were related overall muscle tension rather than specifically the pelvic floor. The good news is that now just four weeks into the program I am pain free and only occasionally get mild numbness, despite maintaining a moderate nordic skiing and running training load (with one intensity session per week). I have not got back on the bike yet, but plan to if progress continues for another month. Note that while the pain is gone, I still don’t feel completely “normal” in that area yet and expect that it will take a lot more work before I make a full recovery.

I would be really interested to hear if anyone else has tried the DCT program and what your results were. Note that the program does cost $250, but given what I have spent on other treatments (and other bike related stuff), it seemed like a bargain. One of the maintenance exercises in the DCT program is monkey bar hanging and movement. I had immediate symptom improvement from just that exercise alone so would be curious if others do too?

Thanks again for everyone’s contribution to this thread, it was instrumental in helping me diagnose my issues and get support.

2 Likes

I took a look at the DCT program. It looks really interesting, like a guided/structured approach to the kinds of exercises my PT was having me do. I’m very curious how it works for you going forward, so please keep us updated. I have similar suspicions about my general muscular tightness contributing to everything.

I’m back on the bike, but I have to stick to low volume and be very attentive to how my body is handling different activities. I tried kicking into a mid-volume plan for a week at the beginning of the year (that was a bad idea). I’d love to kick the symptoms completely.

An update from my post above. I continue to make great progress with the DCT program and other complementary exercises. I am now 100% convinced that is my case (and I suspect for most cyclists with this condition) the primary issue is muscle tension in the hip flexors and quads that causes secondary tension in the pelvic floor muscles. My treatment over the past 8 weeks has not included any direct pelvic floor work (no more therawand!) and yet I have had significant improvement. I am now back to a full nordic skiing training load (including high intensity) and have started to slowly incorporate a couple indoor rides a week, with no issues. Still taking the transition back to the bike slowly as I can tell that the seated position still creates hip flexor muscle tension. My working theory is that because the seated position and pedaling motion does not allow the hip flexors to fully lengthen (short contraction phase) muscle tension builds through course of ride.

The other contributing issue IMO is weak glutes and abdominals. This has resulted in an anterior pelvic tilt, which also puts added strain on the hip flexors on and off the bike. My program has included light strength work for the glutes and some abdominal work (planks and ab roller).

Although I would recommend the DCT program, a good PT (would not recommenced a pelvic floor PT because in my experience they focus too much on direct pelvic floor work) can design a similar program which focuses on:

  1. Hip flexor tension release and lengthening - monkey bar hang with full leg extension is great for daily maintenance
  2. Quad, hamstring, and glute tension release
  3. glute and abdominal strengthening - be careful with the abdominal exercises and stick to planks if exercises are causing pelvic floor symptoms.

I’m still working on my bike fit because it makes sense that a forward rolled pelvis (anterior tilt) should be avoided, but will have to do more experimenting and report back.

1 Like

That’s really interesting! I’ve also transitioned away from a pelvic floor specialist. I think when you’re in the thick of a “flare-up” they’re a godsend because they can do things to free up nerve pathways and such, but I do feel like they’re treating the symptoms and not the cause.
I have also noticed some reduction in symptoms the more strength i build in my lower body but I haven’t (yet) visited a PT for specialized exercises. I did see a PT not long ago for an SI injury and have exercises to correct a lateral tilt in my pelvis.

My guess:
weak/inflexible muscles >>> pelvic asymmetry >>> Bad saddle positioning >>> Nerve irritation.

I keep mucking about with my bike fit too, really tough to find the perfect position that can be comfortable for more than an hour.

1 Like

Good clarification regarding the pelvic floor PT. I didn’t mean to totally dismiss their role in treatment, because I agree that they could have a role to play if you are trying to control the immediate symptoms with a flare-up.

If interested, this website is a very good resource for anterior pelvic tilt exercises which I have added to my routine: Fix Anterior Pelvic Tilt in 10 Minutes Per Day with This Corrective Routine

1 Like

Wow, some very interesting updates in this thread. I’m very interested in the sound of the DCT programme, I installed a pull up bar in my garage a while ago so I wonder if I can use this for the hanging exercise? I guess so.
I agree with the statements regarding other muscle groups contributing to pelvic pain. One person I saw concentrated on rectus femoris stretching, psoas manipulation and my specific pelvic PT got me doing the relaxation side of things.
My current situation nearly 2 years after my first symptoms…hypertonic pelvic floor issue…solved. My perineal nerve irritation symptoms persist, I have good and bad days but while it’s not painful as such it’s still persistent enough for it to. E a permanent feeling. It’s very hard to describe the symptoms but the bottom line is I’m not fully recovered, tbh I genuinely don’t think I ever will be. It’s not cycling which exacerbates it, it’s sitting in general.

Anyway, I’m pleased I’ve been able to contribute to other people’s understanding of their symptoms and openness in discussing treatments. When you have a condition like this you very quickly lose inhibitions about talking about it.

Good luck everyone.

1 Like

This is such a great post. It is more or less exactly what someone I had some sessions with was doing with me. Psoas, rec fem, lunge stretches…all of these I still do regularly. Great post, thanks

1 Like

Just stumbled upon this website and your post. I’ve been dealing with Pudental Neuralgia for a few years now. Ive been to a PT off and on over the last year and a half but am still dealing with the pain. Sometimes I can ride with no symptoms and other times it flares up. It sure would be nice to get rid of this condition once and for all. How is your progress going these days? Are you symptom free?

Best Regards-

Hi there

I’ve experienced this too. Do be careful as if you’re leaning on the wrong place for a prolonged time it can get worse than just tingling. And a lot worse—complete loss of nervous sensation to your ‘man bits’ (and ALL that entails) and your backside too. It’s not good.

I live in the UK so qualified affordable healthcare shouldn’t be an issue but this one is quite rare and not many medics here knew about this. Even though I’m employed by the the NHS too and am a qualified scientist it took me a long time to get some traction in discussion about this.

One of the commenters above mentioned about the importance of standing up when you can. That’s a very good idea. The problem on road bikes is caused by leaning forwards to shut down wind resistance combined with very high tyre pressures which both lead to the saddle being pressed on a place on a man’s body where it can send some big shocks to the inside front of the spine and cause damage to the pudendal nerve as a result.

I swapped to mountain biking (sorry guys!). The sitting up position is less likely to crush the pudendal nerve and the lower tyre pressure and suspension systems damp down the pounding damage to the nerve in question.

Might go back to the road bike but I’m enjoying the freedom of the off-road experience. Plus which I’m still waiting for the full return of sensation there first.

Best of luck and hope the tingling stops.

I’m pretty sure I recently experienced a mild case of this over a few weeks. No pain, just some strange sensations and interruptions to the normal waste disposal system. Not diagnosed but I couldn’t put it down to anything else.

Between lowering my saddle 5mm (I’d recently moved it up 8-10mm), building a rocker plate, stretching my hip flexors and being aware of leaning too far forward this issue seems to have resolved for now.

My experience probably doesn’t compare to many others above, but as has been mentioned elsewhere, the internet is full of stories of people who get no support or relief and so I thought I’d share a potentially positive result.