I experienced similar symptoms, with the addition of peeing blood several years ago, even after a 15mile ride. After trying about 2 dozen different saddles, I found the SMP saddles work best for me. Steve Hogg, the bike fitter had an excellent article regarding saddles and how to sit on them. On occasion, I still get numb from time to time, but only when I forget to stand and pedal about every 10-20minutes to relieve the pressure. At least, I no longer pee blood.
@cosgroveb I don’t think there is such a thing as TMI on this forum! And I definitely appreciate everyone on this forum being willing to share such personal details.
You may be right about sexual activity and flares though. I was unable to perform from the beginning of this - but, just recently I’ve been able to get it back into gear - so that may have had something to do with it. I’ll have to keep a close eye on my sexual activity and the results. By the way, I’d recommend you take a look at “A Headache in the Pelvis” by Dr. Wise. He has a section in there about sex. Mostly about breathing and taking things slowly - maybe that concept will help you out. My PT also recommends taking a break afterwards to meditate with deep breathing for a decent chunk of time to try and get all those muscles back to a relaxed state - although, in my case, I’m still so new to the scene that I’m not sure my pelvis truly knows what relaxed means yet.
Oh yeah, heard of the book. Thankfully for me sex is only a super mild trigger at this point. I could do it every day and it wouldn’t bother me. Barely feel the pain after.
It used to leave me screwed up for a couple days at a time though at my worst. Wife and I were on a vacation in Maui when it was the worst. Super romantic but… only if I want my crotch to be on fire (allodynia) the entire time. At that point sex was like lighting a fuse. Fuck. Easily my worst trigger at that point besides cycling.
Well, even though it’s already on this thread, I’ll reiterate: to anyone dealing with this issue, always try to remember that a flare is just a flare. They will come and they will go - just keep your head up, stay positive and try to learn something from it (at least that’s what I’m telling myself right now!)
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Hey just got diagnosed sadly yesterday . How are you doing?
Just got diagnosed after injuring Pundendal 6 weeks ago. Wanting to start DCT but am a female and wanted to see how it has worked for you all still.
Hi SQ lab saddles are also good for relief in the perineum area , have you tried those ?
I’m doing really well. Still have some pain and inflammation but I almost never think about it. I’m riding 6 hours a week (on a Trainer even!) with no increase in symptoms. I’d recommend having a look at my later posts where I detail my treatment but the highlights I would say are:
- A multi-modal treatment plan worked really well for me! The literature seems to suggest this is true for a lot of folks. For me that was Rest (almost a year), PT, Yoga, Neuropathic pain meds, and a new saddle (Infinity seat for me - ymmv)
- I needed more time off the bike than I ever expected… I wouldn’t have been healed soon enough to train for 2020… No big deal because the pandemic hit
- The single most effective treatment for me was neuropathic pain meds prescribed by a pain doc. Gabapentin particularly. ymmv
Good luck! This thing sucks. Once the PN started, it took me awhile to figure out that sex made it worse. If that happens for you, I’m sorry. I didn’t give it up completely. Figuring out what your triggers are will take time. Also, I couldn’t sit for more than an hour at a time for like a year. Ugh.
I was just diagnosed with PN ~6 weeks ago. After a pre x-mas ride, noticed some numbness under my glutes that persisted for days afterward; and, after thinking it was merely a minor overuse injury, kept riding/running for the next two weeks, only to realize that something just wasn’t right! Found this forum a few weeks back and have to say it’s been a huge help. Not only because it’s good to hear about other’s experiences, but also because of just how rare this condition is and just how hard it can be to piece together a true treatment plan (which as I’ve learned, is really up to you until you find the right people… and that just isn’t all that easy to do!).
In my case, my major symptoms are gluteal numbness at base of my glutes that can, at times, spread up the “inside,” occasional numbness on my outer left glute (which we think is more sciatic compression vs. PN), and occasional genital discomfort/frequent urination that really seems to ebb and flow by the day.
So, I’m 6-7 weeks in, working with a pelvic floor PT, heading to a new doc on Wednesday who specializes in PN (the only one Portland), and have a consult set up with a clinic in California that has a track record of healing PN cases. So flippin’ keen on getting a real treatment plan together and learning a bit more about where the nerve(s) are actually compressed. To that, has anyone out there had success in determining the actual root cause of the problem?? Or have treatments for most (as is the case for me right now) typically been very generalized, targeting pelvic muscles as well as muscular dysfunction in the surrounding areas (hammy’s, lower back), etc… via stretching, yoga, light strengthening?
Also really curious about the progress folks have reported, how long you waited to get back on a bike even after you honed in on a corrected saddle/fit, the keys to your recovery outside of pelvic PT, meds, etc… – basically, when you’re at home, how do you keep the positive momentum going/what do you avoid? Have personally found the guidance (from PTs and docs) to be a bit all over the map – e.g., from keep riding but avoid the bike that caused the issue to just walk, nothing more.
And, finally, for those who are dealing or have dealt with this issue, did anyone manage to maintain some level of fitness during the months of rest/recovery? And, if so, what did you focus on (upper body, swimming, etc…)?
Thanks again for this amazing thread.
Literally the only cardio I could do without significant pain flare ups for about 9 months was swimming. It was fine. I had to learn how to swim continuously for 60-90 minutes efficiently so that my gasping for air was from the workout and not from almost drowning haha. Also, swimming sucks but I guess that’s just an opinion. Even with swimming I had to be careful with wall kicks. Running was too much pelvic floor engagement. Obviously almost any kind of lifting was out (even benching was too much hip drive). Yoga was a god-send. It won’t maintain your conditioning for cycling but honestly that should be the least of your concerns for a little while until you’re better.
Nice work @PDXcyclist, you sound like you are making some good moves from the start.
In order to have more valuable discussions with your practitioners, I’d highly recommend reading:
Dr. Wise - a headache in the pelvis
Stephanie Pendergast - Pelvic pain explained
Amy Stein - heal pelvic pain
I’d also recommend checking out this video about flares:
You’ll notice that a lot of my posts lean toward CPPS as my doc and I are still working through a diagnosis. I’m about five months in from the depths of it, but I’ve found that a diagnosis is difficult to come by. Either way, I wouldn’t let that get you down as many pelvic floor specialists will be able to help you find a positive path forward.
As far as exercise goes, it seems that there are various schools of thought. I like Stephanie Pendergast as she advocates for getting the endorphins flowing through getting the heart rate elevated to some degree. That being said, in my experience, it is also very important to keep the nerves calm - and not overdo it when doing physical activity. You really have to listen to your body and take note if any stressful situations or increased physical activities create flares. I started off walking on flat surfaces, added small hills, then longer inclines. Finally, at about 4 months in, I added very light jogging. Keep in mind I did all of this in consultation with my PT. Because of covid, I don’t have a pool available, but I envy those who have swimming available as an outlet.
Be patient, stay positive and stick to the gameplan you come up with. The hard work will eventually begin to pay off.
Hope that helps!
@cosgroveb and @Klev thanks so much for the info.
@cosgroveb - swimming, I hear ya - frankly that’s one of the main reasons I got into competitive cycling… started with triathlon training, but when the pool was involved I ended up near drowning mid lane so many times, I just said “meh… the bike’s way more fun.” And running is what revealed that I had something weird going on, like with each stride I felt this tingling sensation deep in my glutes… haven’t run since and won’t until the PT clears me. Yoga, on the other hand, is becoming my go to as are many of the stretches @SexyCoolguy refers to in one of his later posts.
@Klev thanks so much for the recs and the encouragement - this thing sucks. Keeping the nerves calm is a huge area of focus, as is identifying triggers. Walking is my go to (outside of yoga/stretching) as is meditation, and whatever else I can do to keep calm, focused on the positive aspects of recovery, and general muscle relaxation. I mean I’ve had moments where I got so amped I could feel the nerves firing in my glutes - that just said right there, that it’s all connected!
The doc I’m seeing this Wednesday apparently has a innovative technique that allows him to id the compression points without imagery (as I’ve learned from another guy who’s seeing the same PT as me), so will report back if that nets anything informative.
I also found that Selle SMP (Kryt model) saddle was the way to go for my pudendal relief.
I have mine at probably -8 to -11 degrees. Very intense downward angle if measuring the way you’re mentioning. Feels great. Hate riding on anything else. Can ride in a very aggressive position with no recurrence of pudendal issues with my Selle SMP Kryt like that. I have a 140mm -17 degree stem in the lowest possible position, for your situational awareness. Very aggressive riding position.
@PDXcyclist I’m curious to hear about your experience with the specialist in Cali. Sounds promising to have an opportunity to look at things from a different angle.
It was a informative and I’m meeting with them again next week. It’s called the Sarton Clinic and they specialize in pelvic issues and have a lot of experience with PN, which as we all know is rare. They also see a lot of patients from outside CA and have a whole program set up for us. For me, they provided further confirmation that I’m dealing with nerve irritation (vs entrapment) and that time, PT, relaxation, etc are keys to healing…as so many here have already described. That said, they also have a much more intensive option available (fly in for two weeks of intensive treatment for ex) when cases don’t improve or when they see a reason to intervene directly - which I’m discussing with them when we meet (caught it early, would intensive treatment help or be overkill).
@cosgroveb, @Klev, @SexyCoolguy, and anyone else who’s healed from PN - anyone open to connecting via PM to discuss treatment protocols/recovery timeframes? I’d like to share what I’m currently going through (pretty personal stuff) and get some perspective from those who have seen this thing through.
Thanks all
Yes - I’m available to discuss privately. As stated, I’m still working through this myself. About a year in from initial symptoms but about five months in from when it really got me. Others on this thread seem to be further down the road to recovery and might be more helpful to you - but please feel free to reach out if you’d like to discuss in private.
Thank @Klev. Haven’t pieced together how to use the private messaging function (and from what I’ve read it’s restricted for new users, which I still am)? Any chance you know how to use it and can reach to me to get the discussion started? Appreciate it.
@ValeCyclist I thought you might like this. I feel like we are coming full circle here.
Simon has a brilliant idea with COAPS. Again this is more of a CPPS spin on things. Nonetheless, I encourage everyone to check out his interviews with some of the leading urologists and PT’s who are pushing hard to find answers to pelvic pain.
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@Klev This man undoubtedly saved my cycling life, he was amazing, honestly, if there is anyone in the UK who has any type of pelvic pain you have to go and see this man. He has such empathy and I can never thank him enough for what he did for me.
It’s such a complex subject, it’s almost a taboo, and rarely is it anything to do with the prostate, definitely not me, it was stress, I didn’t realise what was going on, I was unconsciously tensing my pelvic muscles, eventually it just got unbearable, so painful, nothing to do with prostate, totally pelvic floor muscles. I’m still not over the symptoms but I can cycle daily without issues. The main stressor now is sitting, nothing to do with cycling, just sitting.
I did all of my own research into my symptoms, my GP had never heard of pudendal neuralgia, I was prescribed amyltriptyline which did work but Gérard didn’t want me to use it (and quite right too tbh).
If anyone has any questions regarding this please DM me, I’ll happily answer any questions but if you are UK based please go and see Gérard, you will not regret it.