Healed From Pudendal Neuralgia (and lots of other things)

I guess I’m going to apologize from the outset as I won’t be following up on this post, but I wanted to post it as a way of giving to others who suffer from this awful manifestation of TMS. It was a post here that started me down the path (Ezer - thank you man; your posts got me headed in the right direction, especially your confidence and conviction) and so it’s befitting that I should provide my story to give back. For a very long time I begged off of writing this...

I awoke one morning with the sensation that my legs were on fire, down to my feet. Within days it turned into excruciating pain between my perineum and scrotum, like a knife through the core of me. That was the beginning of three straight years of intense pelvic pain with lots of foot sensations and nerve pain. I went to probably 12 different dr’s. Eventually I was evaluated by an Ivy League pelvic specialist at a top tier hospital, given a 3T MRI (which supposedly shows nerve damage) and based on that diagnosed with PN. I was told it would never go away and would need to be “managed”. I went through a year of invasive physical therapy that didn’t touch it. By the third year I was exhausted and suicidal. The only reason I didn’t follow through was because I had a young child. I was able to rationalize the impact of suicide on every other family member (sufficiently independent to carry on without me) but not her. I then had an epiphany while deep in the fog of suicide: I had not actually tried every option to heal myself but was irrationally favoring a “solution” that was irreversible if wrong (i.e., I didn’t know for certain that I couldn’t heal myself). So I started looking for any hint of someone else escaping this hell. But I felt very, very alone. I no longer believed any help was coming from the medical community. In fact, I had developed a deep hatred of them that was fueling my suicidal thoughts - almost as a way of telling them how worthless they were.

I knew about TMS, but hadn’t found any indication that PN could be a manifestation of it (there’s much more on this now). I came across Ezer’s post and had some hope because of how extreme his condition was. I floundered with trying to heal with a TMS method though. There’s a whole language around TMS that made no sense to me. I didn’t know how to feel emotions. I didn’t even know wtf that practically meant. And on and on. It just seemed so mushy and my giant left lobe only science brain couldn’t get around it. I read the books, journaled, and did all the things but it really went no where. I was losing steam again. I started to believe that TMS would not work for me and fell right back into the S hole.

Epiphany number 2 was to stop trying to do this alone. I was too far down the hole to extract myself. I needed someone to just tell me what to do. I found an online program, Healing Female Pain, by Lorraine Faehndrich. I’m sorry to list this, as I don’t want it to be an ad, but this is the reality of how I started to heal, so I feel I need to put this detail in. I’m not a woman, so it was awkward, but I was let into the class and LF provided email feedback to me as I worked through the course. The course had a lot of structure and I really needed structure as this point. Before I kept making all these lists of things to do from TMS books I read and flailing all over the place. I was also very much in that TMS mindset of detailing the shit out of my condition and convincing myself that I have to have a TMS specialist with experience specifically in this condition and with an exact match on my symptoms. (Incidentally, if you come from a hard science background like I do or are just your typical TMS personality you’re going to obsess and detail the living hell out of this thing and that’s exactly how you dig this hole deeper and deeper. These physical explanations you get from the MD’s are absolutely worthless (the trapped nerve visual is simple, compelling, and absolutely wrong - but it will instantiate itself so deeply in your mind that it will make it very hard to get past it. It’s an insidious mind virus - treat it like the garbage it is).

After I started the course I had an immediate response - I had about a week with no pain for the first time in years. I got pretty ecstatic. Then it all came back. Worse. I had an existential crisis since you’re told by pelvic Dr’s in the medical community that its typical for PN to come and go (this is another mind virus that’s terribly damaging psychologically, as the brain wants linear healing but that’s not how it works. So you never know if you’re healing - could just be a flare in their world). The reality is the flaring is the best clue that it’s mind body. LF assured me this was typical, was progress, and should give me confidence that it has to be mind body. So I kept at it and it waned again. And it came back. Then I had another breakdown when it wasn’t gone by the time the course was over, even though I understood and was told not to focus on the timeline. I made the decision and felt, rather than intellectualized, that I was on the right path. That was a big moment, although I didn’t understand it as such then - I was deciding something in my life based on how I felt about it. I wasn’t a general, architecting my life strategy based completely on logic with no regard to how I felt about anything other than checking off a list of things that would be deemed successful were I to accomplish them.

I was functional now, but it took something like a year for the pain to fully go away. The final piece was very cliched as far as TMS healing goes. I sort of gave up on healing any further. I got on with my life, quit focusing on not only the pain, but on any effort to make it go away. I just tried to act like a normal person - normal people don’t read TMS feeds all day (which is why I’m not coming back to read this, I’m sorry), they don’t listen to TMS podcasts 6 hours a day, they don’t read TMS books over and over (I did all this stuff), they don’t meditate to make the pain go away, they don’t journal, they just live. Just live became my mantra, with a focus on doing things that fully engaged me. If something moved me - if I ever felt a tear come to my eye, I pursued it no matter how stupid I intellectually thought it was. I even listened to a Taylor Swift song as a middle aged man over and over again just because I liked it. I couldn’t tell you when the pain finally vanished, as I had just “moved it out” of my mind. I just sort of noticed that it wasn’t there one day. But it’s been over a year since I remember any substantial pain. I’m pain free now. Wow I never thought I’d write those words. I almost put myself in the ground and destroyed the lives of my loved ones along with mine. I also had lots of obvious muscular disfunction from it and that’s all gone. One last thing - during the year after the course I had symptoms move all over my body. It sucked. It scared me every time and I ended up w/ lots of dr’s appointments to rule stuff out. Eventually I quit those also as no one gets 15 symptoms in one year (and as a TMS’er I know you want the list of symptoms - stop it ). That’s TMS as plain as day. Those all went away too. I really truly hope this helps someone, as other people’s posts helped me (and LF - she has so much more wisdom than my Dr had). Best of luck to you if you have this. It’s 100% TMS, ugly MRI or not (mine was “ugly” as it “clearly showed PN”). Reach out for help though. Sometimes trying to “go it alone” is ... not the way. Even if you’re a loner....

 

Absolutely spot on. And a great example of thinking outside the box.

Too many people get stuck on Dr. Sarno and are not willing (for a myriad of reasons, including fear and/or rigidity) to explore beyond his theories. The fact is that we need to consider the state of neuroscience and mindbody knowledge when he wrote his books. He himself was apparently acknowledging that change and progress were continuing to happen as he neared the end of his career.

There are many, many ways to do this work, even as the core tools (facing fear, mindful awareness, self-compassion, and acceptance) remain essential for success.

 

Such an inspiring story. It's not about perfect. It's about effort. And when you bring that effort every single day, that's where transformation happens. That's how change occurs.

 

@Sparta

Amazing.

If it all came back today, what would you do? "Nothing" and commit to living life normally? Or would you take some course or do some techniques?

I ask because I got over it as well years and years ago. It came roaring back so I figured I had more "work" to do and couldn't remember what I had done to get over it the first time (maybe I also stopped?)

So I've spent the better part of a year trying to "beat this thing" and I'm as bad as I've ever been.

I'm thinking I should also stop. Stop trying and just live. That can be very hard with pain and for me thinking if I'm not doing anything about it then it'll never go away or just get worse, ya know? Thats how it feels emotionally and I get tons and anxiety when I "skip" my healing techniques

 

Hi ! Thank you for sharing your story. As a new PNer, it gives me hope.