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CPPS, Pudendal neuralgia

Discussion in 'Support Subforum' started by Tobiano, Jun 18, 2023.

  1. Tobiano

    Tobiano Newcomer

    Hi Tms wiki! I am new to the forum and I would like to share my story of chronic pelvic pain/symptoms with y’all and also would love to have some feedback. But beforehand, I'd like to mention that english isn't my first language and that I'm currently in an elevated symptoms period so I'm having a bit of a hard time to be clear minded.

    It begins in 2016 when I went to the doctor, 6 months after a penile frenulum tear ( just a minor injury but I had to consult because it was preventing me from having intercourse) . My doctor decided to send me to the urologist and when she gave me the prescription paper, I read something on it that led me to google a specific term that was written on it. I forgot the term but basically it meant : Precancerous sign. Obviously it was not the case at all, I don’t know why she’s used that term but for a whole month I was spending a lot of time on google catastrophising and obsessing over bodily sensations trying to find anything that would ‘’ confirm ‘’ the cancer diagnosis. Eventually I developed PGAD, better known as persistent genital arousal disorder. After a couple of days experiencing the symptom I decided to google it ( of course ) and then I learned about pudendal neuralgia. The articles and testimonies terrified me so much that it led me to experience the most traumatic experience that I can remember in my life and guess what, couple days after I started developing pain/uncomfortable sensations in the testicles, perineum, rectum. For a week the pain/ sensations would be in the scrotum/perineum, then the week after to the rectum and would alternate like that for a long period of time, I would have some good days here and there. I went to pelvic floor physiotherapy and the therapist didn’t find significant tension or trigger point in the pelvic floor so we decided to stop after a couple of sessions.

    I then decided to make some drastic changes to my life and decided to go on a whole body approach ( minimalist shoes, lots of stretches, long walks, started running 30 minutes a day, decided to reengage a bit more in life and started dating. At that point only Golf and playing the drums were triggering the pain and then one day the pain almost entirely vanished. I only had a little bit of loss sensation left in the genitals but other than that I was symptom free and was able to play golf and play drums for hours without pain.

    I was doing very well for a couple of months and then just some badluck happened, I fell badly on my head and got concussed. I was bedridden for 2-3 weeks and then the pelvic symptoms came back. I tried to keep playing golf and drums but symptoms would get worse so I decided to stop. Pain has been very very mild for the last 3 years but urination frequency appeared as a new symptom and 3 months ago, pain came back, a bit harsher than before. I have to mention that since the concussion incident, I had stopped most rehab exercices because I lost the motivation and got a bit depressed.

    I am torn because some evidence point towards mind body syndrome and some other suggest that there could be a physical component.
    Here are some exemples;

    -Flare up starts about a day or 2 before I leave on a trip and lasts until I feel at almost a 100% in control of my environment. Sitting for a long period has nothing to do with it since the pain doesn’t flare up when I’m driving back.

    -Huge testicular pain when I had vertigo on top of the CN tower.

    -Flare up when I get excited for something I was looking forward doing.

    -Flare up for Christmas many times.

    -Considerable reducing of symptoms when feeling highly emotional

    - Most of the time I feel disconnected from emotions, empty.

    -Nothing has been found on medical testings, MRIs etc...

    But also - I am hyper lax, have si joint instability, genu valgum, I feel constant numbness in pelvic area, and sometimes numbness will increase to a new level and won’t really improve, right after doing exercises like golf or intense psoas stretches., abs exercises ( I only have trigger points in my belly ) .

    The beginning of the story is so absurd that it seems obvious that it’s tms, but the constant numbness
    and other predispositions such as si joint dysfunction and hyper laxity makes me wonder.. Can tms cause years long of numbness?

    Also, I wanna give a special mention to Ezer whose success story on pudendal hope forum sent me here and gave me hope for a better future!

    Anyway, sorry for the long read. I’d love to have your feedback and thoughts.

    - Tobiano
  2. Cactusflower

    Cactusflower Beloved Grand Eagle

  3. Tobiano

    Tobiano Newcomer

    Thank you for the response @Cactusflower I already read Sarno's books and also Steve Ozanich's The great pain deception.
    I ve been familiar with the TMS concept for a couple years and many experiences had me thinking that this could be the answer to my problems. I just have a really hard time
    convincing myself that this is it considering the factors I mentioned in my initial post.

    I also have another question. A couple months before my symptoms started I went to see a massage therapist. The moment he touched my obliques muscle on the right side,
    they all went into a massive cramp and since that day, everytime somebody touches me in that area, either on the right or left side I'm having these huge muscle cramps, I just cannot control it.
    If I do it myself I can't recreate the cramps. Has anyone ever heard or experienced a symptom like that? I can't find anything that explains it on the internet and when I mentioned it to my Pelvic floor PT, she said that
    she's never seen it in anyone before me and then asked me about previous physical or emotional trauma for which I had no answer.. She only mentioned something about
    my nervous system being overly reactive.
  4. Cactusflower

    Cactusflower Beloved Grand Eagle

    The more bizarre the symptom, the more likely it is tms…
    And the more you google and research your symptoms, the more confused and frightened you are probably going to be. Doing so is a sign you don’t quite believe you have TMS.
    After reading Sarno and Ozanich, doesn’t what your pt said make perfect sense? If not, I urge you to read them again.
    Ozanich’s book is a difficult read, so much packed in there. What you will read is some of his weird symptoms and how he healed from them all. He did not try to recreate or control symptoms because they are not your problem. The mental, emotional and personality parts of this equation are what you really need to heal, then you won’t need the symptoms. This is why Sarno says “think psychological”.
    If you need a guide of how to do this work, the tmswiki.org page has two free programs at the bottom. Choose one and begin a little every day..

    Good luck!
    JanAtheCPA likes this.
  5. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Absolutely it can, yes. This is a classic example of TMS.

    What Dr Sarno called TMS, which is also being called MBS and PPD in the wider medical community, is defined by two components:
    1) The symptoms are chronic (often lasting for years),
    2) the symptoms can not be explained by a physiological process.

    If you don't think that the brain alone can create intense symptoms without a cause, I would recommend learning about phantom limb pain. It is real pain, yet it exists where there is no body part. PLP is 100% generated by the brain as a result of trauma. In other words, it is just one of many variations of mindbody conditions, as is TMS.

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