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Tailbone Pain, PN, Vulvodynia

Discussion in 'General Discussion Subforum' started by GhostlyMarie, Sep 17, 2023.

  1. GhostlyMarie

    GhostlyMarie Newcomer

    Hello everyone! I’m new here but not new to the concept of TMS/MBS! I discovered TMS about three months ago and have been implementing the things I’ve learned since that point.

    However I am struggling with doubt still and thought I’d ask for your thoughts if that’s okay!

    I’m sorry for how long this might be: So last September of 2022 I contracted an acute UTI, took antibiotics for it and I always get a yeast infection from those and prepared myself by buying monistat. My third day into using the three day monistat, I developed intense burning around my vestibule (opening to the vagina) that lasted for a month. I went to Planned Parenthood because the burning was so uncomfortable and the NP diagnosed me with gonorrhoea without testing me first and scared me by saying “if you don’t treat this asap you will become infertile”. So, terrified and confused by what was going on with me, I took the second round of strong antibiotics although knew there was absolutely zero chance that I had that (fear and pain doesn’t make for rational thinking) just for them to make me extremely ill and later that week my STD Panel came out all clear for everything. I repeatedly went back to planned parenthood just to have them keep diagnosing me with yeast infections which looking back now, I don’t think I ever had. Once they made my situation a lot worse, they finally told me they couldn’t help me and sent me on my way to a gynecologist.

    The gynecologist was no help either. So I have a history of trauma with SA and I told this male gyn this and that my vulva was very painful and sensitive. This did not stop him from shoving a metal speculum into me without warning. So having a male doctor shove an object into my pelvic area re-traumatized me and I left the building in more pain, with no answers and again, terrified. I took to google and Reddit when researching my symptoms and I’m sure you can guess how that went. Complete and utter devastation thinking my life was over and catastrophic thinking like no other. Words to remember: never take to Reddit for anything medical related.

    The pain started to die down in October and my dumb self decided to put this all natural aloe Vera lubricant down there because my area felt really dry. BIG MISTAKE. It burned worse then the monistat did and was so severe I couldn’t walk or move much at all. However this is where my story gets weird. I went to the ER for this burning and the doctor couldn’t find anything wrong. No infections, no chemical burns, no swelling, nothing. After three months of bed rest, the pain began to subside when I decided to go stay with my parents for a few weeks. I remember feeling safe at home with them and I began to recover and the burning pain went away but the tailbone pain began and has lasted to this day.

    In February of this year, I was feeling a lot better than I had in the past and I got way to brave and decided I was going to sit in my car and go for a drive after 4 months of not sitting. Again, big mistake. After the drive, I felt fine. I didn’t really have any odd sensations other than an aching tailbone and then a couple hours later I went pee… and omg, it felt like I was being cut by a knife in my urethra. I’ve been dealing with on and off urethral pain with urination ever since.

    My symptoms had changed over time from vulvar burning to vulvar burning with rectal burning to no more vulvar burning then tailbone pain and finally to pain with urination. But never at the same time. The burning with urination only happens once or twice a day and the rest of the time it will feel normal. I get what I’m guessing are nerve symptoms but also muscle aches as well. I don’t feel my tailbone unless I try to sit and I can walk and lie down fine and as much as I’d like. My pelvic floor physical therapist believes I might have micro inflammation somewhere or a mild case of pudendal neuralgia even though she palpated all of my nerve branches and the test came out negative. Sometimes my pain will move around like I can feel the burning moving up my urethra sometimes or spreading out around the urethral meatus from time to time but not always. Sometimes I’ll have pain with bowel movements or after. My symptoms really ebb and flow depending on if I’m preoccupied by them, or if I’m anxious, sad, scared, and so on. If I’m having a good day, they’re almost non existent or very low.

    I’ve seen GPs, a vulvar dermatologist, gynecologists, physical therapists and their treatments would bring temporary relief but nothing long lasting. They’d all say the same thing “You look fine, there’s nothing wrong.” I also had a doctor get cheeky with me and say “I can biopsy you but I don’t see anything worth biopsying.” So basically we can cut into you and see what happens. I was dismissed multiple times and diagnosed with vulvodynia, coccydynia, pudendal neuralgia and hypochondria (which was extremely upsetting). I refused to take antidepressants for my pain or any pharmaceuticals really as I always get side effects and they just didn’t seem worth it to me. My pelvic floor therapist said I’m her more complicated case because I should have seen more improvement after six months of PT. I have had soooo many tests done and everything comes back normal. No inflammation anywhere, no bacteria, no autoimmune disorders, no hormone imbalances; I had a mildly tight pelvic floor but I’m skeptical that it’s the cause of my pain.

    looking back this isn’t my first rodeo with TMS: I’ve had IBS like symptoms that are triggered by stress, had knee pain and chronic headaches in college, things like that.

    However I had a break through moment when I learned about mind body syndrome and read The Way Out by Alan Gordon and I was pain free for 9 days after. Then doubt started to creep in and the symptoms came back and I’ve been trying to unlearn the pain since. That was in the beginning of July this year. I guess I just wanted to get my story out there and see if anyone may have some insight for me or some advice or a similar story!

    Seven months before I got “injured” last year, I had lost my grandfather who was my father figure, suddenly and it has been extremely painful, I also quit my stressful job and was struggling to get my career started and then all of this happened. I was completely healthy and active before I began going through all of this. I also have childhood trauma, perfectionist, issues with people pleasing and goodism, a history of anxiety and depression, and just overall have a difficult time prioritizing myself. I am the walking poster child for TMS haha I was EXTREMELY stressed out throughout the first 6 months of this scenario. I was anxious all of the time, crying all of the time, yeah… I’m in a better place now but it was really rough in the beginning.
    Last edited: Sep 17, 2023
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hi, @GhostlyMarie and welcome. It's quite apparent to me, as it will probably be to my fellow forum users, that you are, perhaps finally, in the right place! So hooray and lots of self congratulations for that!

    The Way Out is the very latest resource about psycho-physiological conditions, and the fact that you experienced immediate relief is proof of what we still call the TMS mechanism (in honor of Dr Sarno) but which can be referred to in a number of different ways, including MBS , and PPD.

    So you experienced a short-lived "book cure" which means that you now need to do the deeper emotional work. We have a less-than-up-to-date-resource, which is the Structured Educational Program, which you can find on the main tmswiki.org website. You will come across a few outdated links, but the information and the exercises are still very valuable, and the program is free and doesn't require any kind of registration. All you need to do is make a commitment to do the work with self- honesty and self-compassion, and don't let your fearful brain talk you into trying to do it too fast or convincing you that you can skip things!

    Good luck, and keep us posted!


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