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CPPS/Pudendal like pain - TMS link - My story

Discussion in 'Support Subforum' started by RafaelGD, Dec 5, 2022.

  1. RafaelGD

    RafaelGD Newcomer

    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.
  2. Cactusflower

    Cactusflower Beloved Grand Eagle

    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.
    Ellen likes this.
  3. RafaelGD

    RafaelGD Newcomer

    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?
  4. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    How did you get this way? The question is about your childhood and your family dynamics. Not in detail, just a short synopsis. I ask because mindbody symptoms that are this intense, starting at such an early age, are a symptom of serious emotional distress.
    By doing anything specific? One book is not enough. How about a guided program, and, probably, therapy?
  5. RafaelGD

    RafaelGD Newcomer

    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.
  6. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    This is significant. It also generally comes from parents.
  7. RafaelGD

    RafaelGD Newcomer

    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.
  8. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Apparently I wrote most of this a week ago but failed to finish and post it. Since no one else has, either, here goes...
    Just so you know, I am not a therapist, I am only a retired tax accountant, but I've been doing this work for quite a while, and I've picked up a few things that seem pretty universal. My experience tells me that your psychiatrist and medics are correct.

    But you're not ready to agree with them. You have stated clearly that you are completely focused on the possibility that there is a physical or congenital component, which is not something that anyone here, including @ezer, can help you to confirm. Everything you need to know about Ezer's recovery is already in his many excellent posts. Everyone here who has achieved recovery will say the same thing, which is that symptom details don't matter once you've been medically cleared. I can guarantee you that if Ezer were to respond and assure you that it's all psychological, your brain would manage to convince you that his experience is not relevant to you, and you will have achieved nothing. That's what unconscious TMS brains do, unless YOU start behaving rationally and take control of the conversation inside your head. And you're not nearly ready to do that yet.

    I am going to go WAY out on a limb and suggest that your pain is sourced from your experience as a child. Whether you as an adult think this is rational or not, you nonetheless seem to have suffered some kind of emotional abuse from your parents. Whether or not you love them, or they love you, is not the issue. Love and emotional abuse can exist together.

    Your rational adult mind might violently reject any thought that your parents were abusive, but the emotions of the small child are not rational. And, as Dr. Sarno has explained (by reinterpreting Sigmund Freud for modern sensibilities), the negative emotions experienced by children are typically repressed - only to resurface as pain and mental symptoms later on. In your case, "later on" was not very long at all.

    I'm sorry to have to point this out, but in my opinion, shouting and scolding that was so intense and so frequent that you still clearly recall crying in your bed and thinking catastrophically sounds emotionally abusive. Sadly, this is far too common. Often it's the result of parents who were themselves raised by abusive parents and suffered similarly.

    Dr. Sarno himself explains this using two different concepts: one is "symptom imperative", the other is "extinction burst". Both concepts describe the same thing, which is that your fearful brain is fighting like crazy to keep your dangerous negative emotions fully and completely repressed so you don't have to face them. In this case, what is being repressed is the truth about how you were raised.

    As long as those emotions are repressed, you will continue to have symptoms. That's all there is to it.

    You have mentioned self-esteem, and indeed, in order to recover from symptoms caused by lifelong emotional distress, you must be able to love yourself enough that you know, in your heart, that you deserve to heal. You could try doing Alan Gordon's Pain Recovery program on your own, but I have to warn you that your brain might be resistant to doing it with the brutal self-honesty you probably need. If you're not currently in therapy, perhaps you should be, but with a new goal, which is to fully examine how you got here due to your childhood experiences.

    I wish you luck, I really do.
    Ellen likes this.
  9. RafaelGD

    RafaelGD Newcomer

    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.
  10. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    I would say that your brain certainly sensed something wrong - which is that you were being emotionally abused instead of being properly nurtured and cherished. And it totally shut that shit down as too dangerous for you to acknowledge. The problem is that repression without consequences is not sustainable. It will eventually be expressed one way or another.

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