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

For me a change of saddle seemed instrumental in the onset of symptoms, one of which was also the one you describe. The new saddle I went to was very comfortable but very hard and this combined with underlying muscle tension problems caused unknowingly by me led to the perfect storm and I eventually broke.

For further optimism for others on here I did a 6 hour ride yesterday of which the vast majority was off road, no I’ll effects from it, you can get back.

I’ve had PN now since about the start of the year. My symptoms are more of a tingling ring than a penile pain. It sometimes feels like i’m sat on a red hot poker, other times like i’m getting constant mild electric shocks radiating outwards from the ol’ tradesman’s entrance.
I haven’t ridden my bike (road) since April and i still have symptoms every day. I have bought a standup desk as i can’t handle sitting down for very long before the discomfort gets too much, but i am gutted that time off the bike has not managed to heal this by now. I have managed to keep running throughout all of this, which is a godsend.
I have tried stretching, and rubbing the end of my obturator internus by reaching in from around the ischial tuberosity but it’s hard to know whether i’m doing it right or whether it does any good. My GP agreed with my diagnosis and tried to give me pregabalin but i’m not into taking antidepressant drugs as i like my mind how it is and i wasn’t prepared to take the risk that i’d mask the pain and make things get worse until serious problems arose… The pudendal nerve does a lot of important things down there!

Has anyone had any experience with tackling this through dietary changes? I’m thinking that (in a small way) this might be inflammation and so anything that reduces inflammation must be worth a go. I’ve given up dairy, and i’ve just started going gluten free in the hope that it helps.

I have finally got an NHS physiotherapy appointment this week (For the Americans out there: Yay, it’s free, but you got to wait 6 months for an appointment!) so i’ll see if that works, otherwise i’m all out of ideas… I miss riding though…

Hi @RCC,
There is a lot of info on this forum on symptoms…seeing a pelvic physio might help…depending on where in the UK you are, there are 3 experts you can reach out to…Gerard Greene, Karl Monahan & Adrian Wagstaff…Google them. There are also stretches on this forum that you can try…
Anti inflammatory foods I have trying (but don’t know if helping) are manuka honey, turmeric and anything with Vitamin C in it…

It’s great to see this thread remaining so active and helping more cyclists find the right kind of help!

@RCC, absolutely, I completely agree that nutrition is a key point to consider in taking a multi-faceted approach to working your way out of this. I’m no specialist, but improving your dietary intake can’t hurt anything, will more than likely help your body manage better through the rough patches, and will help you to be in even better shape when you start getting back towards normal.

Although I have not eliminated gluten, I have minimized it. In addition, I began watching my omega 3/omega 6 balance and subtracting a ton of sugar. I am not sure if it directly helped my symptoms, but I feel that it has been a big part of my overall improvement.

And, I concur with @Abhijit_Rao - sounds like you are in the UK, if so, you have some of the best pelvic PT specialists nearby. Give them a call and see if they can help get you pointed in the right direction.

@ValeCyclist and @cosgroveb - so happy to see both of you doing so well! Keep it up and thanks for the updates!

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@Abhijit_Rao @kiev @SexyCoolguy @ValeCyclist
Thanks for all the super helpful threads
Does anyone have a recommendation on Pudendal Nerve Blocks - ie can you suggest a Doc who does this ?
Thanks again

Hi @Anchorman,
Sorry but I haven’t looked into nerve blocks. From what I have read, they are diagnostically useful to confirm pudendal nerve irritation but still difficult to pinpoint location of irritation or entrapment…they are also considered method of last resort because you are back to exercises and meds for longer term relief…

After 9 months off the bike, a lot of help from pelvic physio and still on Amitriptyline, I am considering whether I can safely get back to cycling?

@ValeCyclist , @cosgroveb , @Klev ,

What should I consider before trying to get back on the bike? How much of the PN symptoms and pain reduction did you wait to see before getting back?

I am considering getting a new bike fit but which saddles would you recommend? I have seen some mixed reviews on the ISM ones.

I am giving up being a roadie, I have an old steel tourer with an upright position on the drops…considering making that my regular bike with some gravel tyres…

Your advice and thoughts most welcome…

Cheers, Abhi

Hey @Abhijit_Rao I would say ask your physio for his recommendation. I tried to get back on the bike regularly a bunch of times and failed over and over again. That’s OK, but I found that I could stick to it once I could ride with essentially no increase in pain.

If I had to do this over again I would:

  1. Make sure that before I try to ride I’ve taken a reasonable stab at fixing the root cause. For me, that was getting an Infinity Seat. This step is really hard because when things are bad, no saddle will do. None.

  2. I wish I could say “try it on at an x on a pain scale of 10”. My self-reported pain scale changed quite a bit over time as I recovered and realized just how much pain I was in… You can only try it when you’re confident with your recovery and no one can tell you when that is but you… I found that I was overconfident, would ride for a couple weeks, and then realize that my pain was slowly getting worse.

  3. One thing that gave me confidence to keep dipping my toes in over and over is my pain doc stressed that if I overdid it, we could up my dose of gabapentin, try a new drug, or crucially do a pain block shot as a one-time deal. This made me feel like I had a safety net of sorts and made me willing to try things and not be too worried.

  4. As long as my pain isn’t getting worse, I know I’m good to go. I always get worried if I change bike fit at all, do a longer ride than I’m used to, etc. I don’t know that I’ll ever do anything longer than say a century but… who knows what the future holds!

I hope this helps. Your providers will be your best resource as always… If they tell you never ride again, they might be wrong, but otherwise listen to them :slight_smile:

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On the topic of saddles people have had success with: SQLab, ISM, and Infinity Seat all come to mind. Hard to know what works when you’re not sure if you’re ready to ride again. I have an SQLab and an Infinity Seat. The latter works for me.

Another massive thanks for all the help on knowledge on her.
Bad news for me is no better 6 months in . Have tried everything.
Have found a doc who will do trigger point injections under a GA scheduled for start of November.
Also found a pain/nerve Doc who is sending me for an MRN scan which is better for PN than MRI.
Might switch back from Pregabalin to Gabapentin.
All ideas very much welcomed!
I love the idea of the infinity seat but am miles off that

@Anchorman Six months is a hellishly long time for a cyclist to be without their bike but would it help your mental state at all if I shared that for me it was 14 months off the bike and even now 2 and 1/2 years since my diagnosis I’m still on the gabapentin? Not symptom free. Just no increase when I ride. Symptoms getting better all the time but progress is glacial for me… Neuroplasticity is amazing but it takes so damn much time.

Hi @Anchorman,
Sorry to hear you are not getting pain free faster…it’s been 9 months for me and if I push sitting (on a doughnut pillow) for longer than 2 hours, I get a flare up…however, I feel I am slowly improving as my hips and buttocks don’t ache as much as previously and my foot pain is gradually reducing…

Are you able to get any help on the NHS or are you going private for injections and MRN? If you don’t mind, would you be able to give me some suggestions on Pain doc and MRN? I find my local GP and NHS don’t want to look beyond giving me painkillers.

Hey there ,
It’s all on private health via work .
I’m happy to share details of whom I’m seeing later on but shall I have all the procedures first ?
Happy to DM
Cheers ,

Thank you
I might switch back from Pregablin to Gabapentin
I think this worked better
Just come out of bad flare
Deep breathing for 30 mins a day has helped
This thing is a total barst….
I miss this bike and the rides with mates so much

Gladly…but I don’t know how to…send me a DM please and I’ll reply to that…