Pudendal Neuralgia / CPPS due to injury... TMS?

Hello Everyone,

I’m a male in my early 30’s. A little over a year ago I injured myself, and I’ve been dealing with pain and other symptoms ever since. I know this will be a long post, but trying to give a good description of my situation to see if others feel TMS could be playing a role in all of this.

My primary hobby prior to injury was mountain biking. I typically would ride a couple of hours 2-3 times a week. This was great not only for my physical, but also mental health. Other than some nagging lower back / SI joint pain, I was fairly pain free. Last November, as the riding season came to a close, I got access to an indoor trainer bike. I decided I’d train on that a few times a week to maintain fitness over the winter. After a couple of weeks of riding on the trainer 3x a week, for 45 - 60 minutes at a time, I started noticing some odd sensations.

During my rides on the trainer, I was starting to get numbness / tingling in my genitals and general perineum area. I never experienced this kind of sensation when riding my mountain bike on the trails. I chalked it up to sitting much more when on the trainer than I do on the mountain bike. I started making a conscious effort to stand every 10 minutes or so during my rides. I also started wearing padded biking shorts. Unfortunately, neither change brought any relief. The numbness / tingling during rides turned to pain, and I started having some pain with urination. I also was having some slight discomfort when sitting after a ride. I decided to take a few weeks off from riding over the holidays to see if it would go away.

After a few weeks, I was feeling better. The pain when sitting and urinating had gone away, so I decided to give riding on the trainer another shot. I had a few good rides before the pain came back with a vengeance. Despite standing every 5-1o minutes, the pain / numbness started coming on almost immediately during my rides. The pain with urination was back, and sitting was very uncomfortable on my perineum / sit bones. By the end of January, I decided something was very wrong, and I needed to stop riding and see a doctor. (I now know the saddle on the trainer was very wrong for my body)

I first saw my primary care doctor, wondering if perhaps I had a UTI. My urinalysis came back clean, but he diagnosed me with Prostatitis. I was put on antibiotics and an anti-inflammatory for 2 weeks. Unfortunately, this treatment did nothing for me, and if anything my discomfort while sitting increased during this time. I was also having some sexual dysfunction (which was completely new for me)

Next, I saw a Urologist. They again checked my urine and found nothing amiss. He felt as though I had simply irritated things down there while cycling. His suggestion to solve the issue was to stop riding. It was extremely disheartening to be told that the way to get better was to give up my passion / hobby.

After a few more weeks of staying off the bike and hoping things would get better, I started to do my own research and came across Pelvic Floor PT. The PT essentially diagnosed me with overly active pelvic floor muscles and irritated pudendal nerve. Since April 2024, I've seen two different Pelvic Floor PTs (once a week). Treatment consists of internal work as well as some external stretching / strengthening. At first I saw some decent progress, but unfortunately that stalled out after the first few months.

Last fall, I started going to a pain clinic at the recommendation of one of my PTs. They diagnosed me with Pudendal Neuralgia, and recommended a bilateral pudendal nerve block with steroid. From what I understand, the goal of the procedure is to confirm the issues is due to my pudendal nerve, as well as give some temporary relief while the nerve is numbed. Unfortunately, I don't think the block worked, as I did not feel much if any relief. I also had an MRI of my pelvis done, which showed some fairly significant arthritis of the lower back, pelvis, and SI joint and L4/L5 disc degeneration. I am scheduled to receive another pudendal nerve block in a few weeks.

At this point, I have been dealing with the pain for over a year. I would say it's certainly not as bad as early 2024, but I'm still not back to normal. I get quite a bit of pain after sitting for extended periods of time and driving. I also get some burning pain after urination and intercourse, and sometimes after walking decent distances. I haven't ridden a bike since January 2024, outside of very briefly sitting on an exercise bike during physical therapy.

Through social media and some other websites, I came across the idea of TMS. I read Alan's 'The Way Out', and have been trying to implement some of the techniques listed in the book. I connect with some of the common traits of people with TMS (perfection seeker, people pleaser, history of anxiety / depression, dealing with stressful career / finances). However, I also am 99.9% sure my pain was caused by a physical injury. Even when trying to focus on the idea that my brain is the source of the pain, in the back of my head, I'm also wondering if something is physically wrong with my pelvic floor muscles or pudendal nerve from the bike saddle. On one hand, I'm trying to be mindful when in situations with minimal to moderate pain to think about the pain and remind myself that it's just a mistake by my nerves / brain. But then I wonder if I'm actually causing additional nerve damage by putting myself through that.

Again, I'm sorry for the novel. I'd love any feedback about my situation, and whether you think TMS is applicable. I'd also appreciate any feedback on next steps I can take to really apply the concepts discussed in Alan Gordon's 'The Way Out.'

Thank you!

 

You've obviously had some chronic issues for a very very long time, like myself.
My posture has been dramatically altered, including the position of my neck, shoulders and pelvis - this runs down to my feet.
I've been "treated" for a myriad of issues because of this for the last 30 or so years, but the chronic back pain for the last 15 or so. Everyone told me it was "because" of something physical. Which it is and is not.
It's because of chronic anxiety. I held myself so tense for so long that it simply altered my physiology. It happens (Dan Bugglio is a TMS coach and personality on youtube who had similar physiological changes..all of which have been resolved) and it's temporary. Erasing all these old false narratives about cause and effect are hard, but the honest truth is it simply doesn't matter. The cause and effect are anxiety. The idea that you were somehow injured is also most likely a false narrative. You had no accident, no incident to cause this pain other than perhaps anxiety.

The Way Out helps you begin to recognize and begin to build some doubt about the idea of injury and permanency. It does not delve into a lot of the more psychological side of TMS, simply because it's meant to be kind of short and concise. However Gordon himself is a psychologist (and I feel the very beginning of the book, when he describes his own case, shows much more of the psychological side and is a good place to focus on) and his TMS practice, the Pain Psychology Center does go into the psychology a bit more. To learn more, you might try reading the Divided Mind by Dr. Sarno, and see if any of it relates to you (another small book), and try any Claire Weekes book and begin to notice if perhaps anxiety and thought patterns have played a part in your life.

My own TMS coach is a cyclist and also has experienced altered posture. Hers is very much centered around her thought process of her competitive nature which is in essence "being hard on yourself" and having a hard time simply enjoying the movement and activity. This might also reflect in other areas of your life.

After reading Dr. Sarno, why not try beginning the free program available here, called the Structured Educational Program. It's just over a month long with some seemingly simple but very inquiring questions and exercises meant to aid awareness of some underlaying psychological patterns which not only contribute to, but cause TMS. It is challenging but eye opening and will help you begin to further your TMS education. You can find it at TMSwiki.org and scrolling down the page.

It's very common for people to wonder about TMS but have a hard time accepting the idea. You've simply conditioned your brain to think physically for a lifetime (as we all are, thanks to social norms). It takes some time to be able to change things up. The first step is to notice how you are feeling emotionally during the day, what is your emotional state - can you feel the physical sensations of the emotions you might be experiencing?

Please feel free to ask any questions!

 

As a fellow cyclist (road bike, mtn bike, spin bike, etc), I can relate to what you wrote and as a TMS sufferer (look for my threads about my Hip surgery as well as my Knee pain) I can offer the following observations:

- It's interesting that your pain started after you went from a fun activity like Mtn Biking to the relative "chore" of indoor spinning. I'm sure I don't have to explain how much of a drastic change that was in enjoyment? And sure, you do spend a lot more time in the saddle on the spin bike (just as you would on a road bike) compared to mtn biking - and that might be a cause for this injury to manifest - but think about it, there might be something to that disparity in enjoyment from one to the other too.

- Sometimes TMS symptoms "latch on" for one reason, and then "stick around" once they've realized they have hit a rich vein. It's possible your pelvic symptoms started as a deterrent to your spinning, and once they realized what a wonderful distraction they were for you, they stuck around for other reasons.

I'll close with what I always recommend to someone just starting out on their TMS journey:

- Keep a light spirit and light heart - it's hard I realize
- Read and re-read the Sarno books and whatever others that you like (Ozanich, etc)
- Read the success stories on this forum
- Listen to TMS podcasts - I like Eddy Lindenstein's 'mind and body fitness'
- Do some journaling, or focused talking to yourself
- Make evidence lists - pros and cons on why it might be or might NOT be TMS - be honest
- Try to get back to activity, this takes tremendous courage I know

Good luck!

 

In 2023 I had chronic pelvic pain for six months after a vasectomy. The pain was excruciating and I fell into a depression. I thought something went wrong with the procedure or I had self-inflicted the problem by resuming my running routine too quickly, even though I followed the urologist’s recommendations exactly (he, for sure, blamed the pain on me doing what he told me I could do). I then saw multiple other urologists, did pelvic PT, got a nerve block, etc., and didn’t see almost any progress. The pelvic PT helped somewhat. One urologist wanted to do a surgery to strip out all the nerves in my spermatic cord.

After six months, in January 2024, I resolved to stop acting like I was injured and slowly get back to my regular activities and the pain mostly resolved over the next few months, enough to start enjoying life again, though I was still under the belief I’d had a physical problem and that I was healing because resumed activity was promoting blood flow to my hip and pelvic muscles (a urologist told me this).

Then in July 2024 I had a major relapse and was in terrible pelvic pain again. I was sure I had pudendal neuralgia as a lot of my symptoms lined up with that scary condition. The pain got worse with sitting, etc. I thought I’d overdone it with running too much and had re-injured myself somehow. But then I started gathering evidence and realized the pain was what I now know to be TMS. It completely resolved after I became confident there was actually nothing physically wrong with me. Reading The Way Out helped a lot, as did reading and listening to other success stories.

I would recommend seeing a TMS doctor to review your imaging, etc. It can help a lot to have someone look over your case and come to an independent conclusion as to whether you have a structural problem.