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

Back with another update. Progress continues but is slow, with the pudendal neuralgia now completely gone but still with mild urinary flow issues. As I indicated previously these issues have likely been building over a couple decades, so getting quick resolution is not realistic. I am back on the trainer 3 days a week for 60 minute zone 2 rides. I make a point of standing on the pedals for 1-2 minutes every 10 minutes (not for pressure relief but to stretch the psoas). I also am conscious of maintaining a posterior/neutral pelvic tilt while on the bike.

I am now 100% convinced that in my case the psoas (one of the hip flexors) is the prime culprit. Biking as my only exercise source for decades, too much sitting (desk job), and likely a genetic component has resulted extremely tight, shortened psoas muscles which caused a chronic anterior pelvic tilt and secondary pelvic floor tension. The pelvic floor tension resulted in pudendal neuralgia, urinary flow restriction and all that other wonderful stuff. I wanted to emphasize this link again, because my first reaction when I started having issues was that it must be related to pressure from the saddle. While saddle pressure can cause similar symptoms, in my case it was not the problem. Your experience may be different, but if you have experimented with different saddles with no real symptom relief, I would focus on tension release of the psoas as well as other prime movers (quads, hamstrings and glutes).

My therapy continues to involve primarly psoas tension release work using the dynamic contraction technique (DCT), but I also continue to work on general flexibility as well as strengthening core and glutes. I now have a sit-stand desk, and run as well as bike. When running and walking I am conscious of my pelvic tilt and try to keep it neutral or posterior by focusing on a tight core (sucking in belly button helps for visualization).

Good luck to everyone.

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@ValeCyclist - I read through your comments and found them super helpful. All of a sudden, I have had issues cycling. I will get massive pain in my sit bones for up to 5 days after I ride. Would you be open to connecting, ask you a few questions, and share my story to see if you have any insights or guidance? Thank you so much! Ben

@Edmcycle Thank you for the thorough post. I have been having some issues that I think are related to pudendal neuralgia. I was wondering if I could pass my situation passed you and any advice you might have. It is super depressing… Thanks - Ben (I just ran into this forum today, so I am new)

Yes, no problem. My experience is limited to my own situation but would be happy to let you know what’s worked for me.

Ive been reading all the responses. I am a novice rider. Most I have rode at one time was 30 miles. I rode the wounded warrior bike ride for several years. About two years ago while training for 300 mile ride from to Ny to DC I began having a numbing pain in my left testicle. I stoped riding for a while but it did not get any better. Was checked for a hernia and testicular cancer. Thankfully all came back negative. I kind of put riding on the back burner because of the pain and life got in the way. One other thing I have developed in this time is irritable bowel syndrome (IBS). Now I will get the pain after having a difficult bowel movement. Sucks getting old. I really want to get back into riding and your posts have given me some home. I really miss doing the WW Bike ride and would like to try it this year. Hoping all your sugestions will help with my Pudendal nerve pain. Stay safe and 6ft apart

Hi All,

First of all, thanks to everyone for their stories. It’s good to finally find somewhere that people are willing to share their experiences of this. It seems crazy that it’s not more widely publicised as a very real risk of cycling. If more people knew what can happen, they might be able to prevent it. I know I would have tried!

I wanted to share my (ongoing) experience as I think it may be slightly different to some others:
I had been having issues with saddle sores for some time. These seemed to be primarily on one side of my groin and recurred in more or less the same place. My bike fitter was not much help. I suspected it might be caused by my cleat alignment, but he said it wasn’t likely so I forgot about it. Having tried numerous creams, bibshorts and anything else I could think of, I opted to try a few new saddles out to see if that could have been the problem.

I hadn’t had much luck with the saddles but eventually found one I thought would work. Soon after I went on a cycling holiday in the Pyrenees. Once I started on the holiday, I felt like the saddle was actually a little uncomfortable, pressing into a spot next to my left sit bone. I only felt this when riding in certain positions and was having such a great time riding the big mountains I thought nothing of it. 5days and 22hours of riding later (my previous max would have been about half that). On the sixth day we drove back to the north of France (about 8hours) and there were no issues. On the 7th day when I woke I felt a little pain whilst sitting but didn’t think much of it. I tried to go for a recovery ride and the second I sat in the saddle an electric shock shot from the back of my perineum into my left testicle which erupted in pins and needles. Needless to say the ride was abandoned, with the pain proceeding to continue anytime I sat down.

Obviously, I was incredibly worried about this and saw a Dr who didn’t know what was going on but gave me some Ibuprofen and told me to go to the emergency room if it continued. It did, so I did. I was then diagnosed with Cyclist’s Syndrome (although the Dr was a little unsure) and prescribed Naproxen.

Over the next few weeks the pain subsided a little but was still causing problems. I proceeded to spend 6months visiting various PTs and Dr’s who were largely unable to help. I also took a lot more Naproxen and Ibuprofen over this time. Some of the PT’s stretches helped a little but nothing seemed to be resolving the problem. Eventually the pain subsided to a feeling like I was sitting on a golfball with a sensation like muscle strain radiating down the back of my leg and in my groin. During this entire time I had not sat on a bike.

I eventually paid for a private MRI as the health service in my country is very slow (2years wait) and it revealed some inflammation in the ischial bursa and fossa. I tried a pelvic specialist PT for a number of weeks which helped a little, but again my pain soon plateaued.

In January I paid to privately see a urologist who diagnosed it as ongoing fossa inflammation, and referred me to pelvic PT. I saw the PT for several weeks, receiving internal work and ultrasound therapy as well as some release of the exterior muscles. This seemed to be making progress. Unfortunately, I had to travel for work and although I’m now home, coronavirus prevents me from returning to the PT. I have tried the wand but have not been able to achieve the same results as my PT.

The pain has largely subsided, but a lot of discomfort still remains and I am still having to sit on a specialist cushion and stand where possible. It has now been almost a year. I tried to ride one of my beloved bikes on a trainer but even 5 minutes caused issues. I also tried one of the ISM saddles but it still seemed to dig into the same place.

All of the information everyone has posted has given me a few ideas. I have struggled with postural issues and weak core since I was teenager so suspect this may have been a contributory factor also and will be trying to strengthen this in the hope of further relief.

FYI, under consulting with one of the PTs, it seems that cleats may well have been a cause of the sores as they were causing some pelvic rotation on (front to back).

Good afternoon. I’ve had cyclist syndrome (PN) symptoms for about a year now. Could I get some info on your experience? Thanks. It’s pretty unnerving

@ValeCyclist if you’d be willing to share

I would also appreciate discussing this privately. Thank you

PM sent.

The photo in the blog is not me btw.

I’ve been working on a pudendal neuralgia website for cyclists with the goal of spreading awareness & helping those managing daily symptoms. I came across this forum thread a while back and wanted to share.
-Kate

www.pnandcycling.com

Hi all,
This post is a like a light for me, especially since I’m going through some difficult times, physically and mentally.

A month ago I started having a feeling to urinate like every 30 minutes. And a burning/electrifying pain right at the top of the penis. After a trip to an urologist, some blood tests and an exam his conclusion was that I had some sort of nerve irritation from cycling/sitting. I had 2 sessions with an osteopath, than I went in vacation and so my symptoms went away. 2 weeks ago I did one quick session, no problems. Then 2 days later, it was so hot that I couldn’t sleep so at 4 am I went for a 40 min ride during which I had a big pain in my right sitbone. During the day I was so busy that I forgot to drink water and in the evening I suddenly collapsed do a pain in my lower abdomen and going to the toilet felt like pissing glass so I went to ER. An urine test showed an infection with E.Coli so the diagnosis was bacterial prostitis.

I’m currently in the middle of a 3 weeks antibiotic treatment but I really don’t feel like it’s just an infection. The symptoms are identical, although greater, to the episode just 4 weeks ago. At the osteopath my hip flexors were so tight, they hurt like hell. I know my pelvis is tilted. And before these episodes I felt my position on the saddle was different.

I have the same bike, saddle and equipment for the last 3 years and used to ride 2-3 hours without any issue. And never had I felt any pain or numbness in the area. After our first child was born, I could hardly find any time to ride 1-2 hours per week.

But this year with the lockdown, I was sitting at the home desk for 4 hours, then went out riding 45 minutes, then back sitting, most of the times no warm up or stretching, since I was thinking it was just a short ride. I guess all my frontal area is all tight and closed.

Having a possible UTI makes things also worse because all doctors now focus only on this. But I feel that it’s something more, for example, in stressful situations the pain in the scrotum is worse. Actually the night I went to ER, I had received some bad news at work. I also have pain in my lower abdomen, which is hard to pinpoint if it’s my intestines due to antibiotics or the pelvis. I also feel a faint pain/heat in the inner thigh and when I press the area I can swear I can feel the pressure in the pubic area.

Anyway, now I know I’m not crazy, that the pain is not just in my head. But I’m really anxious that it is so difficult to diagnose and treat, especially that I have a situation in my family which requires all my time, besides having a full time job. Until now cycling has been my escape from stress and anxiety. I always said that as long as I have my bike, I can push through anything. And now, that it’s the bike which I have to stay away from, feel like, well, a very dark situation

Dear all - I can’t tell you how much I appreciate this thread. I started off with some excessive urination issues. GP thought no big deal. I didn’t associate it with riding. Six months later, here I am - rocked to the core. I can’t even sit down for more then a few minutes!

Anyway, because of this thread I figured it out. Been to a couple urologists, gastroenterologist and no one knows anything about PN.

Starting PT on Friday and seeing a specialist doctor on Monday. Thank you all for pointing me in this direction. Without you I’d still be hopelessly and aimlessly going through the healthcare system.

Can’t wait to share my story and progress.

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Alexul - I’d like to hear an update. I’m in a very similar situation and seems like we are coming here in close proximity. I’d like to help offer some sort of support and brainstorming through this ordeal. Excessive urination and electrical sensations in the head of the penis are part of my issue too. I also got put on an antibiotic at the first urologist, and shortly thereafter I couldn’t sit down. I only had the electrical sensations prior. No guarantees it was the antibiotic, but who knows.

Hi Klev,
There isn’t much of an update. I’m currently going through some big stressful moments at home and work and that doesn’t make things easier. I didn’t have time for PT yet but I’ve see an osteopath, he tried his best, knew about the condition, however the muscle manipulation actually caused a big flare up of the symptoms.

So now, I’m pretty sure it’s all about muscle tensioning and imbalances. The reason I went to osteo was because one morning I was shocked when looking into mirror and seeing my self skewed, my right hip way above the left. The reason is that due to the stressful situation my family is going through, my little boy feels all the this and needs reassuring which means carrying him in my arms a lot of time, so I use my right hip to support him.

And so I realized that my body just got used to this leaning position, I wasn’t aware of it, plus all the muscle tension in my right side. In day to day life you may not notice, but when riding, the bike is symmetrical, so if one side has a shorter reach, the body will compensate. My supposition is that I was no longer seating square on the saddle, with more weight on the right glutes which probably crashed the nerve somewhere. An imbalanced position will also over tension other muscles in the body, because we have to walk straight: I have very tight hip flexors and a dull pain in the right glutes. Also my right sciatic nerve is irritated

If I don’t have time for PT, I will try some somatic exercices. They are very easy, slow, fluid movements in order to reset the muscular system by going through the nervous system. You could try the book from Thomas Hanna, and then there are several, paid, online courses based on his work.

But I believe the situation is resolvable. A couple of years ago I was loosing sensations in my right hand. Turned out I had a contracted muscle in the shoulder, pulling me to the left so on the bike I was compensating by contracting the right side too. All of this unconsciously. And the doctor then pointed the the “issue” with riding a bike: it is perfectly symmetrical while our bodies are usually not, either structural or functional.

Thanks for all the info. I have been to my first PT and to a doc specializing in pelvic pain. I’m in a very similar place to you. Many things that we do (how we walk, how we sit, etc) cause our muscles and skeletal system to compensate. Then we do something that just puts it over the edge - in my case cycling too hard. I was also in a high stress environment around the beginning of covid, so I’m sure that had something to do with this as well. I found a website that I’d recommend: curecpps.com

He went through many of the same issues and came up with a good routine/mindset to battle through.

I think it is so unfortunate that the medical establishment is still lumping all of these cases into prostatitis when only 5% of us actually have an infection. From what I can gather, the sooner you seek therapy/treatment the better your chances. Already six months in, my brain has rewired my pelvic muscle process and it is a challenge to reverse - I can’t imagine digging out after many years of misdiagnoses.

I feel fortunate that so many people are on these forums and on the web sharing optimism and thoughts of how to be successful. Stay positive everyone! Let’s help each other through and keep creating more success stories!

Update on my case: not doing any PT or stretches besides the occasional yoga anymore. It was helpful in the beginning but I hit a plateau pretty quickly. I’m still on 1200mg daily gabapentin. That seems to have been the number one treatment option for me. Side effects are minimal to non-existent and my pain only bothers me when it’s wearing off. Pain is extremely minimal and has been for some time. Using my infinity saddle, I’m putting in 5-7 hours a week on the bike and have been for almost 3 months now. I’m now convinced that I’ll get over this and get off the meds eventually, though the road has been long. At least I’m riding and it’s not causing any problems!

I would like to thank all of you for staying active and involved on this thread. It’s good to hear from everyone - especially that you are still making progress! While it may be slow, it is progress!

Cosgroveb - looking back on your initial posts I feel very similar. My first two PT sessions have helped my pelvic floor immensely. While I still have crazy pain while sitting and still can’t even imagine jumping back on a bike, the electrical sensations in my groin and my ability to urinate less often have gotten much better. It amazes me to think how over wound my pelvic floor was - and probably still is. Just learning how to breathe and to correctly relax my pelvic floor has been wonderful and highly educational.

Anyway, glad to hear the update, happy to hear you are riding again, and I hope everyone else is staying positive and making progress too!

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