Embarrassing story of my chronic pain

Hello everyone,

My story isn’t a heroic story where patients developed chronic pain after a difficult childbirth or elite athleticism. I’m a 42-year-old man who developed chronic pain following the use of a prostate massager—a single misstep that profoundly disrupted my life. It’s not easy to share, but I believe honesty is important in communities like this.

I experienced immediate electric/shooting pain in the rectum and perineum after using the device.
Lacking awareness of PN at the time, I pursued unrelated diagnoses and treatments for several months.
Eventually, after extensive research, I began to suspect pudendal nerve involvement.
I worked with three different pelvic physiotherapists. Unfortunately, none produced meaningful results.
Since then, progress has plateaued.
My current status:
Pain levels: Usually range between 1–3 on a typical day.
Pain location: shifts, but still within distribution area of pudendal nerve.
Unable to sit more than 15 minutes due to pain
Flare frequency: Despite trying to avoid known triggers, I still experience at least one flare-up per week.

I am 12 months into this horrible journey and starting to realize that even though what triggered my pain was physical action, my pain in reality is TMS:

1) Pain almost disappears when I am engaged in activity or talking to friends;
2) I have no pain when I wake up and stay in bed. Even if I stay in bed for an hour;
3) Pain is emotionally driven. When I am upset or scarred I feel burning sensation;
4) The more I read about pudendal neuralgia the more symptoms I developed:
a) initially I was able to sit, but then I learned that PN patients cannot sit and my sitting tolerance diminished to 15 minutes;
b) My pain was only in rectal area/right buttock. But then I read that it can migrate... Well and of course it migrated to my testicles;

What points to the fact that the pain has a physical component to it:
1) I feel burning after bowel movement. I am not sure if brain can control this sensitivity;
2) I feel pull/discomfort in my testicle and buttock when I urinate or have an erection
3) Sitting causes pain
4) Squats or leaning down causes discomfort/pulling sensations
5) I feel numbness in my buttock on the affected side if I sit on it for a certain period of time
6) I feel discomfort if I lay in bed on affected side

I was hoping to get some expert opinion from the community on what I am dealing with and how to overcome this nightmare. I hope that the community can help me and guide me in the right direction in my healing journey.

Thank you everyone for listening to this embarrassing story!

 

Hi Alex, welcome. PN was my first debilitating TMS symptom, mine was fairly severe 9/10 pain, had to take opioids, but thankfully lasted a month. I remember the horror of reading the PN forums thinking I was screwed. I left a terrible job as a result of the pain and the symptoms eventually subsided (i don’t think this was unrelated) I was not TMS aware at the time, and my nervous system wasn’t at a high enough threshold for the pain to become chronic (in my not so expert opinion), I wasn’t as consumed with the symptoms as I would be in my subsequent TMS adventure. Regardless I am now deep in TMS world and still dealing with chronic scrotal pain, as a result of a vasectomy, although thanks to this work my situation is much much improved. I can certainly empathize with the horror of chronic pain in an area we are already prone to guarding and being protective of.

I highly recommend Dan Buglio’s work, his YouTube channel is pain free you, I think a good starting point is changing how you approach the symptoms, sensations. Get off all support groups, and if PT has stopped helping, it isn’t wrong to discontinue.

what was your life and mental state like leading up to PN, you don’t have to reply here but it’s wise to acknowledge this reality. I think a lot of us tmsers in the early stage have the thought of if I just didn’t do x (in your case prostate massage, in mine a vasectomy) our lives would be perfect. But the reality is, that I’m almost certain you’ll realize is that there were aspects of your life before that weren’t healthy. And your body was likely giving you warning signs for a while, and eventually your nervous system threshold ‘glass’ overflowed, and then symptoms appear.

if you want more specifics or just want to chat feel free to PM, this work has saved my life, genuinely. You are in the right place.

 

Hi, @AlexH
Welcome!
What @Rabscuttle says is true. You were a powder keg ready to blow. Your brain just happened to pick that particular incident to launch your TMS. The good news is—everyone who does the work gets better. The bad news is: it IS work. And for some people, it takes time and patience. But before it’s all overwith, you will be an entirely new and amazing person in all areas of your life.

The best way to get started is to take the Structured Educational Program, here on the forum. It will walk you through. Check it out!

And …stick with the forum. It will save your life!

 

Thank you for your kind words of support. I am really curious to discover the world of TMS and hopefully recover from this awful condition.

I checked oud Dan Bulgio's youtube channel and it looks very interesting. I already left all PN support groups as those are very depressing and dissapointing.

I think that I was happy prior to when my symptoms started. I cannot think of any traumatic events. I do not know why I decided to do this sexual experiment...

 

Thank you for sharing the resource. I feel overwhelmed with the amount of information on TMS and I am glad that there is a structured program.

 

I agree that I do not have much to lose as this method doesn't cause any harm.

I think that maybe I felt a weird sensation after prostate massage, got scared, started researching and got my PN TMS. I don't know, I will have to find out through this journey of self discovery with TMS.

 

It’s also entirely possible that the initial pain/symptoms were the scare event that broke the camels back, and you obsessed over them and your brain picked up on the fear and so the vicious cycle starts, regardless of the cause this work will help. But even in your post, quite a bit of shame and regret come across. You did not do anything wrong my friend, you’re allowed to experiment and try to find joy in whatever way you want, you weren’t hurting anyone. You deserve better than this, and I promise you a brighter future is possible.

 

Hi there Alex,
A lot of us fall into some traps when we start to try to address our TMS. Everything from getting overwhelmed with new information and not being able to sort it all out & connect it to our personal situation to becoming obsessive about the work to becoming obsessive about results to sort of throwing our head into the sand...The TMS brain can jam us up when we try to deal with the TMS brain!

The important thing is that we make steady progress (slow is fine b/c we have to internalize this stuff).
Wishing you the best.