My pelvic pain is TMS?

Hello everyone,

I would like to share my story and ask for guidance from experienced members of the community:

I am a 37 year old male and my symptoms started 1 year ago. I originally felt pain in my rectum and during sigmoidoscopy they discovered a healed fissure. (I live in Canada, so by the time the diagnostic test was done everything has healed).

Unfortunately nobody warned me that I won't be able to drive after the procedure and as a result this procedure was performed without sedation. This was very stressful experience for me and I was emotionally traumatized by it. When I came home I cried in the shower as if I was raped. I know that this may sound silly, but these were my emotions. First time I cried since I was a kid!

Within a couple of days I developed pain in my pelvic floor: shooting aching pain, pain with sitting, pain with walking, pain with bowel movements. After googling the subject I suspected pudendal neuralgia and decided that my life was over. I became almost bed ridden and spent 3 months like this.

Went to pelvic floor pt and she decided to do strengthening exercises which made matters worse.

I gave up on idea of pelvic floor PT. Persuaded myself that I have pudendal neuralgia and decided that this is my life now.

Symptoms gradually improved, but not fully resolved: still chronic pain, but probably 50% of the original pain: pain with sitting but achy pain as if I am sitting on a bruise, not burning or electric shock like pain from nerve.

First aha moment happened when I went on vacation to Mexico: my flight was 6 hours and I sat during this time. It was uncomfortable, but also not catastrophic (PN patients cannot sit for 6 hours). Pain reached certain level and then just stayed the same, maybe 3 or 4. Biggest surprise was when I experienced some pain free hours during the vacation where I was questioning myself if I even have pelvic pain.

I decided to pursue pelvic floor physio with another physical therapist. I thought that this is likely a muscular issue and not my pudendal nerve. I was excited when my therapist diagnosed me with muscle spasms and trigger points. I was very fortunate and with 6 appointments my muscles became normal and trigger points resolved. At my last appointment she pocked at every muscle and I could not care less about the sensation, it felt NORMAL and HEALTHY!

But the pain is still present: pain with sitting, pain with walking and sometimes pain after bowel movement. Pain is either in my buttock, rectum, perinium or testicles, always in one place and never at two places at once.

Pain is still very limiting and frustrating and my physical therapist plans to discharge me as there is nothing wrong with my muscles. She is very knowledgeable, experienced and is considered the best expert in the province where I live. I really respect her opinion.

I am starting to suspect that my pain is actually a mind body condition. Has someone experienced something similar? It definitely had some trauma and muscular component to it, but now it is purely mind body.

Thank you everyone! I appreciate your answers.

 

Sounds 100% like TMS. I would recommend the structured educational program in this site as well as a book or two on TMS for foundation. I dealt with Pn and various pelvic pains, fully recovered from them via mind body approach

 

Thank you for your response. Which two books you would recommend?

Is there a link to a post where you share your story?

 

It definitely sounds like TMS and I thought I had PN too! Here is my story and I'm more than happy to help further if I can: https://www.tmswiki.org/forum/threa...d-chronic-back-pain-starting-at-age-21.30294/

 

My story is still ongoing because I have other symptoms but I’ve made good progress. But post vasectomy pain was what led me here and that’s completely gone, and if I can turn off that pain when there’s something anatomically off then I’m quite certain I can get over the rest of my issues.

I think anything by Sarno is a good starting point. I would just pick a program and dive in then reevaluate when you’re finished. Personally I’ve found most success with spiritual based non guided meditation, But everyone is different.

and just an fyi, most people dealing with PN are dealing with TMS, neuralgia is just a general term for nerve pain. Even if someone’s nerves are compressed that doesn’t mean it’s not TMS, you can get nerve compression from a few things, and they can easily be caused by the brain creating tension. You can have TMS and your manifesting of TMS is PN. Don’t get lost in labels or diagnosis’, especially when they’re just describing symptoms.

the PN forums are full of people who are absolutely terrified and medicalized and misled by doctors who have no idea what they’re talking about. A body that isn’t in chronic fight or flight heals. If we’re in a constant panic and subsequently treating ourselves like dogshit then the symptoms can keep going indefinitely.

 

I’ve had very similar symptoms and you’ll find that a lot of other folks have too by searching the success stories and just the forum in general.

Our mind likes to attach itself to something that scares us or you have deemed is important — so it will continue to send the signal to get your attention, away from your emotions. It can be inconsistent and play tricks on you to keep you engaged.

What you’re going through does sound like TMS — and you’ve been to doctors who have told you everything looks good now.

I think you’re golden to begin examining the MindBody connection — have you read a book by Dr. Sarno? Get yourself a copy and start there. Also this forum offers a Structured Educational Program which is fantastic and almost everyone who’s completed it has had the aha! moments and learned something deeper about themselves and their habits.

Another book that’s highly recommended is Hope and Help For Your Nerves by Dr. Claire Weekes. It’s a very slim small book but it’s saved my life many times. I keep this on my bedside table.

Welcome and good luck!

 

I have had similar symptoms and have seen a lot of progress with the TMS approach in the last two or three months that I’ve been committing to it. I too had physical trauma/injury to my pelvic area and if I am being honest with myself I am still working on letting go of the fear that something might still be damaged there, but the fear doesn’t square with days I’ve had when the pain has diminished or gone away entirely, which you’ve also experienced and which are more evidence of TMS. I too gave up on the regular physical therapy route and have had the most success working on the psychological.

Yes, read a Sarno book! I started with Healing Back Pain and then read Mindbody Prescription. I might recommend starting with Mindbody Prescription. I’m now starting the Divided Mind finally which is great so far but longer and a bit more work to get through.

 

Hi @Misterio and welcome to the forum!

I too experienced pudendal neuralgia-like pain (for a long time) as one of many tension-related symptoms — including throbbing and burning pain in my rectum.

I’m female and post-menopausal, and my PN-like pain came on after using an electrical kegel (pelvic floor muscle exercising) device on medical advice. Whether you're male or female, pelvic floor actually needs balanced tension for organ support, and overworking the muscles with kegels can disturb that balance.

My rectal pain began very suddenly one day — a sharp, searing pain during a bowel movement — followed by months of burning and throbbing, with no structural cause found.

What helped me recover was mind/body work (releasing emotional tension, which in turn releases bodily tension and discomfort) combined with the technique described in an article I once found online (unfortunately the link no longer works, so I can’t credit the author) as follows:

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DID YOU KNOW THAT YOUR TONGUE HABITS AFFECT YOUR PELVIC FLOOR?

The hypoglossal neurons that control the tongue are linked with the phrenic neurons that control the diaphragm.

In simple terms, your tongue’s position and activity can help activate the diaphragm, encouraging deeper breathing and improving pelvic floor coordination.

To breathe diaphragmatically, place your tongue on the roof of your mouth just behind your front teeth. This helps signal the diaphragm to contract properly and draw air into the lungs.

Using the diaphragm throughout the day allows the pelvic floor to move naturally through its full range of motion, keeping it supple and responsive.

Shallow breathing up in the chest and shoulders tells the nervous system to “ramp up,” which can increase muscular tension and pain.

So if you have pelvic floor issues, one of the best things you can do is keep your tongue resting gently on the roof of your mouth to support nasal and diaphragmatic breathing.

A normal resting tongue position can be found by placing the tongue against the roof of your mouth as if making a clucking or clicking sound. Ideally, the front third of the tongue rests just behind the front teeth.

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Regarding the above, I found that a simple trick is to make the “n” sound softly to yourself — that naturally puts your tongue in the right position.

I started tagging “check my tongue position” onto daily activities — after brushing my teeth, before and after using the bathroom, after finishing a call, etc. This helped me build it into routine life without much effort, and it has now become a good habit.

Bear in mind that it's unlikely that you will get instant relief — the muscles need time to rebalance — but doing this regularly over time made a profound difference for me.... Combined with mind/body work to ease general mental and physical tension, I gradually lost not only my pelvic discomfort but also many other tension-related symptoms.

This was not at all silly! Your brain's reaction makes perfect sense after such a distressing experience. I had a sigmoidoscopy to investigate my issues and my brain responded by giving me horrendous colon pain — which happened for many months afterwards, but eventually disappeared after I used mind/body approaches to calm my nervous system and release stored tension.

 

Thank you for your support Adam. I would love to have a coach in navigating this new world of TMS. I would really appreciate your guidance on my next steps.

 

Thank you very much for sharing your story. I am so glad to hear that you were able to overcome your post vasectomy pain.

Thank you. I will start with Dr. Sarno's books.

 

Thank you very much for your support. I will definitely start with the books that you suggested.

 

Thank you for sharing your story and supporting me. I now started paying attention to my tongue, but it seems to be in the recommended position all the time

 

Well, that's good, so that's half the 'battle' already won!

I was thinking that you might find Ezer's recovery story encouraging. He was diagnosed with pudendal neuralgia and had physical treatments to include surgery, all to no avail because his symptoms were mind/body in origin, here's the link: https://www.tmswiki.org/forum/threads/pelvic-pain-healed.8680/

Of note is that Ezer's posting is a very old one and the website of Monte Huefte's that Ezer refers to is no longer available, but you can read Monte's recovery story here https://www.tmswiki.org/ppd/Monte_Hueftle. (Monte didn't have pelvic pain but experienced other pains; Ezer was inspired by his story and used a similar mind/body approach.)

Wishing you well.

 

Thank you for sharing this. Yes, I spent a-lot of my days catastropisimg as I read horrors on pudendalhope where Ezer used to be a moderator. I read all of his posts there and it was very interesting to see his evolution from body to mind-body approach. He tried to save others there, but most people just wouldn’t listen because “their pain was real”.

 

This is crazy... so i had bad pelvic pain 1 hour of hitting it would hurt and then exponetially ramp up, i travelled to LA to see someone to help me with pelvic pain it was this resisted stretching course i did for like 5 years to no avail, on my flight 11 hours long... i did not having sitting pain literally at all it was bonkers. I thought i was going crazy, here am i flying across the world and it was like one big joke. I was so convinced my issue was structural/needed stretching physiotherapy which i had done for more then 5 years even then it took me a while to clock it because in the pelvic pain space theres so much belief of it being structural. No one was able to tell me why this plane occurence happened and i sweeped it under the rug for a time. It was the same on the other trips i took. Yet in my office chair i absolutely had immediate discomfort on sitting and pain coming on an hour in. Its not like i was super stressed about being in a plane im not scared of plane travel, but i was dreading the pelvic pain that i was convinced would come on and i'd need to like try and convince the staff to let me lie on the floor somewhere or walk up and down the plane for 11 hours.

My guess is being in a large metal bird in the sky for the human brain is a shock and the brain no longer prioristises sending the pain signal to the pelvis because its suddenly distracted by being thousands of feet in the sky. Someone tried telling me it was because of the plane seats but that was rubbish i had sitting pain sitting even on my bed at home. Literally a pelvic floor specialist told me that... then joked oh well maybe you should become a pilot as a career...

I personally took Dan buglio's approach to tms pelvic pain and managed to drastically improve sitting pain in 2-3 months. Prior i tried deep breathing and calming my nervous system through that and avoiding too much sitting but that did not help at all, saw a male pelvic specialist for that. I can fully do the gym without flare ups, food no longer causes me issues.

I noticed too that when im socialising among a lot of people or people i dont usually chat with, in other words im more distracted/focused on communicating well my pelvic pain was better. I have hard flaccid too not sure if you do but mine is like not there at all in similiar social situations, i only know because when i go to the toilet il have a full flaccid no issues. Urinary dribbling and Ed aren't fully gone yet, but ive just started journal speak as per advice here, i do think repressed emotions is playing a role in this and is my next step in this. Its been 3 months which is a small time frame in the 11 year effort where i made no progress, infact my sitting pain became notably worse half way through prior it was really just standing pain which the first pelvic floor physio's i saw were baffled by. I can expand on what i mean by Dan's approach if you want i'm probably almost at the word limit.

For reference ive had pelvic pain and hf issues for about 11 years.