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Day 1 My healing journey from chronic pelvic pain

Discussion in 'Structured Educational Program' started by Karolien, Jun 25, 2021.

  1. Karolien

    Karolien Newcomer

    My name is Karolien. I was just looking at a picture of me, taken on February 26, 2018. The first day of a trip to Bulgaria with my boyfriend, whom I had known for about a year back then. I am smiling in this picture, but in reality I was crying deep inside. Two weeks before this picture was taken I unfortunately got infected with herpes (HSV1) via my boyfriend. He had no symptoms at the time of my infection. The symptoms I got were horrible. I've never been in so much (physical) pain in my whole life. After the herpes outbreak had visibly disappeared, the painful sensations in my vulva remained. To this day I am plagued and limited almost daily by burning, stinging, tingling pains in my vulva, buttocks, and sometimes even my legs.

    In 2018 I was diagnosed with post herpetic neuralgia and generalized vulvodynia. Last year I was referred by my GP to a specialist in the field of pudendal neuralgia. This gynecologist does not rule pudendal neuralgia out, but also thinks of an overactive pelvic floor. She was able to determine this via an internal examination. This could explain the pain that I am experiencing. The fear and anger caused by the herpes infection (and trauma build up earlier during my life) may have caused my pelvis to spasm to the extent that an overactive pelvic floor has slowly developed.

    I've tried several things to heal. Amitriptyline, gabanpentine, pain education, but none of this really helped. Unfortunately I had to stop with acupuncture due to Corona and the traveling distance. What gives me relative peace is yoga. The gynecologist who diagnosed my overactive pelvic floor referred me to a pelvic floor physical therapist. She recommended some easy exercises but it didn’t bring me any relief.

    A few months ago I got interested in TMS, but I didn’t really dive into it. My symptoms were actually almost gone for a month, until two weeks ago they came back big time. Even symptoms that I’ve hadn’t experienced for more than a year.. Just when I got a little hope that this hell was slowly coming to an end it hit me as a boomerang. I don’t have a clue why this happened. I am tired and frustrated, but more and more convinced that TMS is key for healing.
  2. Jane G

    Jane G New Member

    Karolien, I'm replying because I just submitted my day one story today too and as a sister newcomer, also tired and frustrated, sick of feeling unique and alone, I have hope and I am rooting for us. Hug.
    Karolien likes this.
  3. Karolien

    Karolien Newcomer

    Thank you Jane. We are in this together ❤️. We can do this!
  4. angeloflove

    angeloflove Newcomer

    I'm sorry for what you've been dealing with. I'm also at my rope's end with ongoing back/groin pain. My lovely dog died last week and that just made it all worse. I didn't realize how much sadness I've been holding in for so many years due to past traumas, losses. The dog going opened up the floodgates which feels good.

    I'm realizing too that I am scared of the pain. I will need to really work on changing this.
    Karolien likes this.
  5. Karolien

    Karolien Newcomer

    Hey Angel,

    so sorry for the loss of your dog. I can’t even imagine what that must be like next to all you have to deal with because of your pain already. But I am pretty sure that we will heal eventually. We will. ❤️
  6. angeloflove

    angeloflove Newcomer

    Thank you. His death is so painful that it's actually opened up the floodgates for me to grief many things from my life that I hadn't really remembered or dealt with so that, in a way, is a good thing. I must say, I'm so tired from crying. :)
    Karolien likes this.

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