Male Chronic Pelvic Pain

Hi everyone,

I have been dealing with severe chronic pelvic pain since I was 29, I am now 32. I have tried literally everything you can imagine for my condition except anything invasive. I've never had any injections or anything because, I knew my pain wasn't stemming from any localized area because the pain became entirely systemic. I've basically been laughed out of pain clinics. When the pain began, I was enduring a very long period of time in my life with severe stress and multiple traumatic events that seemed to happen one after another.

In my journey over the past two years I have tried everything from yoga, pilates, multiple forms of stretching, pelvic floor physical therapy (extremely traumatizing for me as I am heterosexual) regular physical therapy and nothing worked for me at all whatsoever. I have swallowed every pharmaceutical in the galaxy for my pain except an opioid. Currently I am on klonopin for anxiety because the pain is so bad and also Seroquel which is an anti-psychotic but its to mainly to help me sleep, but I have disturbing dreams. I ended up in mental health clinic because I made a statement to the psychologist I was seeing that I was going to kill myself because the pain was so severe. My Father flew from my home state of NJ to Atlanta where I relocated when I was 25 for my career and I have not been back since December of 2020. I have lost everything except my job somehow.

Finally around September in 2021 I discovered a system founded in Nebraska called Postural Restoration Institute. Its a form of exercises that are very odd at first but incorporate breathing strategies. It started exposing many neurological issues with myself. They explained to me how I have been stuck in a neurological pattern of faulty movement and biomechanics for many years called the left aic right bc pattern. I started training and working out with a trainer in this form of asymmetrical corrective exercise. Through the exercises my jaw started changing its landing locations and it was discovered that due to orthodontia when I was a child they created a retruded jaw and cut off my airway and my tongue was always down never touching the roof of my mouth. Leading me to breath and move compensatorily my whole life. I believe this is one of the reasons why I suffered unexplained anxiety and a constant state of fight/flight that I never realized I was actually in, its just the way I thought I always was. The new location started making my lower mandible start kicking my teeth out to make space from the faulty, but well meaning orthodontia. I then found my way to a neuro-optometrist, which there are only a few in the country. They found through a highly specialized exam that my glasses were causing more torque through my body through movement and that my eyes were unremarkable but I have a binocularity issue and they are not working as a team, sending my brain two different images of the world, causing things like dizziness and fatigue. I am a highly specialized engineer and have worked in the financial/industrial industry for over ten years. A long time spent in front of computers with an extreme amount of stress. I found one day at work the stress was actually making that part of my body tense up when the pain began. So I realized I have been storing stress subconsciously in the pelvic floor many, many years.

I found when my jaw is in a better position the muscles from my eyes all the way down to my toe are able to fire neurologically much faster versus this aberrant location of tooth contact. I realized my issues were far beyond just pelvic pain as the pain is systemic and I basically have pain everywhere. But it is sourced there, in the worst part of your body you could ever possibly imagine. I started training in the gym with a physical therapist who approaches movement through the concepts of asymmetry. So I believe I have found what will help me at least from a physical perspective.

I found the mindbody prescription early on in my journey and I could definitely relate to its concepts however it never was talking about my issues specifically so I didn't know how it could help me. Then recently I came across an interview with Ira Rashbaum. I had gone to NYU Langone last year to see a neurologist (also called me crazy) but I had no idea anyone continued the work of Dr. Sarno

I watched All the Rage four times over two days and found myself crying hysterically through so many sections of the film. I realized that my condition had really started when I was in my very early 20s and throughout my 20s I had strange problems with my body I always ignored. But my body was talking to me for a very long time, I just had no idea how to address any of my problems because I had seen doctors for my unexplained abdominal pain leading up to full blow chronic pain but they never found anything. I was so concerned with my workload I ignored myself. I was even working two jobs to support someone I thought I was going to marry and then the onset of my condition left me. I had seen a dermatologist for unexplained itching I had in my mid 20s and they gave me creams and the itching would go away and then it would return. When my Grandmother passed away I had a full blown rash break out and I was on prednisone for a long period of time to get the swelling to go down because the cream they gave me caused an allergic reaction. I never revisited my itching issues again because I never wanted to go back to the dermatologist and just dealt with it. Then suddenly one morning I woke up at 29 in my new home and my life completely was turned upside down.

I believe I have found what will help me work on my physical body as I have seen some very interesting changes within myself. I started building muscle back and after two years of being bedridden and in constant pain my body become extremely deconditioned. But I decided to see Ira and this week I will be going back to NYU Langone pretty much about a year later since I was there, to try working on the mental aspects.
I believe TMS but I also don't believe I can just make my pain go away without doing anything physical about my problems because they are just so severe. I feel I have to take daily constant action. The thing about his interview I found was there was a page with all these other conditions mine being one of them. The books always talked about back pain. I got the divided mind and went to the index and found how my issues were in that book.

For a very long time I was so hysterical and emotional I was constantly triggered psychologically about everything. I have and still issues somewhat going into public. And literally everything would trigger me. Everything I once enjoyed before I had pain. I've been a guitar player for over 20 years and found I couldn't play anymore. I would find myself hysterically crying just looking at a guitar and also hearing the music that I love and all of my hobbies I completely lost. I stopped doing everything because everything I tried in the medical community was completely useless and created a serious financial drain. But I haven't given up, I still have my career. I've relocated back home with my parents in NJ and am in the process of selling my home I had just purchased in Atlanta right before everything began. It was my dream home. I used to wake up before pain and would praise God everyday of finally getting me to a place where I always wanted to be my whole life. I started life with horrible minimum wage jobs and was a construction worker and finally worked my way to a place where I thought I had true happiness. I lost all faith in God and my religion and couldn't imagine that he would let a man and one of his followers suffer such horrific pain. But I found my faith again. I started a small community of men in another forum with this condition and we are like a brotherhood. There are many of us out there with these conditions who are suffering in silence. It doesn't just affect women.

I'm 99% sure Ira will diagnose me with TMS to the nth degree. So I will be starting the mindbody work in addition to my exercise. I found slowly found my way back to some of my hobbies, but they still trigger me because I feel I cannot enjoy them the way I used to because of the pain. Its as if I suffered a severe stroke that never existed, nothing happened I didn't even trip off a curb. Its like I had some form of a near death experience. How I've never even passed out from this pain in two years is literally beyond me.

Thanks for reading and any advice and thank you for this safe community. I really had no idea this community is as large as it is and had no idea TMSers existed in large numbers.

 

wow~ this is quite a story~ intense and intricate. which usually spells TMS. you’ll get through this~ you’re on the right road!

 

Thank you for sharing your personal story. After all you’ve been through you sound hopeful, which is a testament to your inner strength.

I too have pelvic pain. For what it’s worth I’ve heard several times that the jaw and pelvis are very closely related. I’ve had serious dental work the last three years and perhaps that escalated my pain. I don’t know. It’s amazing how complex we are and how little is definitely known about the body. Even with some drugs that have saved people’s lives, the medical community doesn’t know exactly how they work. Just that they do.

Thank you again and best of luck.

 

Wow this is me to a T. I did Invisalign a couple years ago and there have been shifts in my body ever since.. and then I had a molar extracted a few months ago and it made my posture and the way my head sat completely messed up; I also have noticed my body has been in extreme fight or flight as well. I finally found a dentist who told me there was a connection with the development of my jaw and how my teeth touch... told me to look into DDS (Dental Distress Syndrome) and thats when it all clicked for me. I would love to chat privately to see how you're doing.