Pelvic pain - how can I ever 100% convince myself?

J

Jason32

Peer Supporter
I've read that its good to compile an evidence sheet as to why something is TMS. There is lots of evidence (past history of what were clearly mindbody syndromes, years of extreme stress before my fall that initiated pelvic pain symptoms). The problem is, I can just as easily look at the same evidence and conclude the pelvic issues are not. I've worked out all my issues. My life has actually been great the last two years- in fact, if it weren't for this chronic pain I'd be perfectly happy. I don't have stress in my life anymore. Other symptoms came and went- so why is this so persistent and extreme?

Most of the healings seem to happen in a year or less. I've been at this for two years and have been trending worse again over the last few months, to the point where I'm basically back at the same level of pain when this all started. Believe me, I'm not insulted by a mindbody syndrome. I'm one of the people who WANTS this to be TMS- that gives me the hope of a full cure. I hate Doctors and procedures, they give me a massive anxiety attack and I have no confidence in them anyway.

Most of the pelvic pain patients here had the problem come out of nowhere. If that had happened to me, it would be easy to dismiss. Mine started after a fall on my tailbone down the stairs. Most pelvic pain patients get a clean bill of health on imaging studies. I, on the other hand, have been told so many different things. The first Doctor I ever saw said I had a broken tailbone, but the radiology report said they didn't see a tailbone fracture but I had a "mildly displaced sacrum". A nurse practitioner I saw didn't even know how to read the X-ray report. An orthopedic surgeon looking at the exact same X-rays said there was nothing wrong. An MRI showed nothing wrong. A colorectal Doctor told me I had a "serious abdominal condition" but couldn't figure out what it was. A gastroenterlogist basically told me there was nothing wrong. A pelvic floor PT said I had a crooked tailbone and pelvic floor dysfunction. I've gotten so many diagnoses (or non-diagnoses) it's ridiculous- how can I ever know who was right? Most Doctors don't even understand these conditions anyway. A TMS Doctor I E-mailed with last year told me I should "be checked out by at least two urologists" - as if I haven't seen enough Doctors!?

If I had never been given any nocebos would I have healed? I don't even know- Pudendal Nerve Entrapment is what scares me the most, and it can't even be seen on an imaging study apparantly so I can never disprove it. Researching early on was definitely a bad idea. There's a lot of evidence its nonsense diagnosis (and I've even posted about it), but I also ask myself "what if?" What if I'm walking with a dislocated tailbone pushing everything around causing pain? What if I really do have an Entrapped Pudendal nerve giving me all these symptoms?

I've tried so much- I even watched Alan Gordon's youtube video on pelvic pain. I understand it all and keep trying, yet its not working- why?
 
This is a tough one, Jason, and I'm really sorry for your pain and frustration.

I'm a tax accountant, not a health practitioner, so I tried looking up PNE, but the descriptions are way beyond my level of understanding. Let me ask you this question: What if it IS PNE? What is the prognosis, physiologically speaking, if you don't receive treatment? (whatever that might be).

Or, another way to ask the question would be: What is the worst that can happen if you have PNE?
 
Prognosis for PNE is really bad. Most people who have it are in pain forever. Some try medication, physical therapy or surgery with little success. In fact treatment seems to be risky, with many getting worse. Few Doctors even know about it or treat it. So worst case scenario is I'm in terrible pain forever.
 
Okey dokey - so doing nothing won't change the prognosis. That's the good news, Jason. If you were being pressured into taking action (some kind of invasive treatment) that would be more challenging.

So here's my next question: What is the worst thing that could happen if you stop trying for a medical diagnosis, and totally, 100%, assume that PNE is a psycho-physiological condition?

You've already listed a bunch of proof for that (PNE can't be seen, for crying out loud) and you've also listed a bunch of proof about how the source of your pain is almost undoubtedly psycho-physiological - because no two practitioners can figure out what the source of your pain is.

The thing is, Jason, these three sentences tell me a lot about where you're at:
Jason32 said:
I've worked out all my issues. My life has actually been great the last two years- in fact, if it weren't for this chronic pain I'd be perfectly happy. I don't have stress in my life anymore.
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I'm sorry, but no human being alive has ever worked out "all" their issues. I doubt that the Dalai Lama can say he's worked out all his issues - I would hope that he's more self-aware than that.

And stress? Human beings were designed to live with stress! We're wired to be looking around for danger all the time, it's a built-in survival technique that we can't avoid dealing with. Perhaps a completely cloistered monk or nun lives without stress. Hahahahaha - probably not - they still have to live and work with other human beings - it's impossible!

I don't want to be unkind, but I think you need to go back to Square One. Start by looking at your expectations. I suspect that you have put very unrealistic expectations upon yourself - and that at least some of the repression that's still taking place is your brain's unwillingness to let you acknowledge that you have failed those expectations. There may even be an unacknowledged part of your unconscious that knows that even if you didn't have this pain, that you would not, in fact, be "perfectly happy". And yes, I know that that phrase may have been offhand, and that I shouldn't take it literally - but in my mind, it goes hand-in-hand with the other two statements which are very concrete ones. So I'm using "perfectly happy" as a convenient metaphor for your basket of unrealistic expectations, if you don't mind.

Mind you, I'm only a tax accountant, not any kind of therapist or health practitioner. I'm also a TMS sufferer who's been at this more than a couple of years. This is simply my gut reaction to your post, but of course I could be totally off-base.
 
I used to have urinary frequency and pelvic pain when I was a teenager and the symptoms mostly went away when a doctor told me it was psychological. After discovering Dr. Sarno in March, 2016, this is even less of an issue for me. I don't fear my bladder and pelvic floor muscles anymore.

For me I just had to forget about my pelvic pain and once I realized it was all psychological, it was easy for me to not worry all the time about it. Sometimes I have a flair up and I remind myself that there is something stressing me out. Usually a flair up when I'm in transit so it is easy to identify the source.

My pelvic pain and urinary pain was 100% psychological.
 
Sometimes the fastest way to believe is experience - direct physical experience of the mind body connection and change in the body leading to change in the mind - I've see a lot of pelvic pain relief from TRE Trauma and Stress Release Exercises that trigger of autonomic shaking to release patterns of body tensions - this approaches the problem from the other way around somatic release to change psycho somatic pain rather than psychological insights to change body pain. Might be worth a go.
 
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