CPPS/Pudendal like pain - TMS link - My story

Hello everyone, this is my first time sharing my story so sorry about the long post.

I write this post because I was inspired by @ezer and others that cured themselves of
their pelvic pain using the mind-body approach.

I have been battling chronic pelvic pain with pudendal/levator ani symptoms for almost
half my life and I'm 31.

I always had high anxiety in my daily life with a lot of negative
and catastrophic thinking. Never been much of a positive person.

So all these states of mind preceded my onset of pain and symptoms.

My pain is in the rectal area. When I started noticing it, 14 years ago after a constipation
episode I begun to tighten up my butt, probably as a response to the pain.

Went to a pain specialist and was diagnosed with CPPS.

In 2014 I discovered the Pudendal HOPE forum and read about pudendal neuralgia.
My symptoms matched what was described there and felt worse after.

This year I tried to relax my pelvic area but I can't seem to do it.

If I let go, after all these years of clenched-tight pelvic area, the sharp and more
intense pain appears. Basically along the pudendal nerve.

I recently read Sarno's books and decided to just let go of squeezing my butt.

This put me in the biggest flare-up ever. And I even developed new symptoms

- I can't stand still without tightness in my feet above the knees, which sends
my pelvic area into spasm.

- Then my abdominal muscles started to spasm and breathing through the diaphragm
intensified it even more

- Somehow the spasm in the abdomen is connected with the one inside the
pelvis and each one makes the other even worse.

This new pain level sent my body in fight-flight mode with spasms and tightness
all over my body.

I tried to treat this psychologically rather than physically but the new level of
pain completely knocked me down into submission.

I know Sarno and the TMS approach states that you mustn't focus on pain and
just let go but it's hard when it's actually worse when you try to let go.

Did anyone else got worse before they get better when doing the TMS approach?

How did you manage focusing on emotions or psychologically while dealing
with a lot of pain?

Would like to know more about your experiences with breaking the pain cycle.

 

I think it’s quite normal to get worse in some way, before feeling well. Both my pIn and my anxiety skyrocketed. I was using a tms coach and working with a psychotherapist. When I added on trying the Presence Process, my brain went bonkers.
The brain is simply protecting you more, because it has been trying to protect you from the things you are now doing -things perceived as threats. More pain is created to heighten fear in an attempt to keep you “distracted”. I found it really helpful to take a step back from myself, at these times (sometimes called an extinction burst) and simply work on skill building. What can I do to keep calm, how can I find things to distract my mind at times, how can I both feel my emotions about this situation but keep myself “real” -not go down a path of worry, rumination, panic, worst case scenarios. Basically it’s a chance to learn lifelong habits.

 

Did your emotional work pay off? I saw @ezer cured himself with that method. I find it really hard to do it while my body is in full flight and fight mode due to the pain escalation. How can you do it?

 

I did a lot of psychotherapy of course and discovered that I used to bury my emotions. Using Sarno's patterns I am do-goodist. Developed low self esteem since a very early age. And anxiety also.

When I was in primary/gymnasium I would obsess and fear about getting a low grade, fail a test etc. I have this type of thinking since I can remember.

So there is a strong emotional process that preceded my pain.

But there is still a memory about a physical symptom that keeps nagging me and blocks me from more TMS work. I remember that as a child when I was in a swing and thrusted forward, I would have like a small electrical shock where I now have the pudendal like pain. I have that same feeling in danger situations for like a second. It's like an instant zap when my brain senses immediate danger. But I had no pudendal pain back then. Just this sensation. It developed once I started tensing my pelvic floor.

The thought that destroys me is that I think I might have something congenital about the pudendal/pelvic area. Hope @ezer might reply if he sees this post since he has a lot of experience with this pain.

I read Dr. Sarno's books and started to think psychologically but didn't work due to pain escalation. I am now looking at Alan Gordon's program and also to read Unlearn your pain.

 

Yes, I know. They always expected the best from me. And I never wanted to fail them. Not having good grades or behaving in a certain way to be good in their eyes always was a driver for me.

But I love them and they are my rock since I can't do much because of this pain.

During childhood whenever they would shout at me or scold me for certain things I would feel deep emotions that I never expressed. I used to go and lie in my bed and cry and think
catastrophically. My psychiatrist and also the pain medics that I've been at believe that my pain has a very important psychosomatic component.

And I do believe that also but I can't make progress because I got stuck trying to relax my muscles. And they tensed up even more. I can't fully explain that.

 

Thanks for your input Jan, and yes you are correct. Since starting the mind-body route and letting go of the tension in my pelvic area through breathing exercises my symptoms and pain flared up big time. I never felt so bad as I feel right now. And that's what got me back into thinking about physical symptoms again. Like, what if I got pudendal nerve entrapment as a baby when I had a hydrocele removed or this or that. Now my right pelvic area hurts even when I take deep breaths, so this put me into a shallow breathing mode which in turn ramps up the anxiety and fear and more pain.

That's where I'm stuck. Because I can consciously remember being anxious and fearful since I can remember as a child. But I'm stuck in the chicken or egg situation. Was this because my mind sensed that something was wrong in my pelvis, even though I didn't have any pain. Or was the pain generated later on due to high levels of emotional repression, tension, anxiety fear and others.

I did start to actually focus on emotions and I had pretty powerful responses in my body. I think and feel unwanted emotions regarding events that happened in the past. And my body immediately tenses up. I am now looking into how to use these emotions and feel them and also started the Alan Gordon's program.