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Pelvic Pain and other symptoms - TMS? Advice appreciated!

Discussion in 'General Discussion Subforum' started by ARCUser831, Oct 15, 2023.

  1. ARCUser831

    ARCUser831 Peer Supporter

    I have been experiencing pelvic pain and other uncomfortable sensations for almost 10 months. Those symptoms have included the following:

    Urge incontinence - frequently feeling the need to pee
    Lower abdominal pain
    Rectal pain
    Intense tingling in inner and back thighs
    Hip, thigh, calf, and foot pain
    Shooting vulval pain
    Vulval twitching/spasming

    And the most aggravating - an uncomfortable clitoral sensation. Sometimes I can refer to it as painful but more often it is a form of arousal or constant sensation/awareness that will not subside for hours or days.

    Unrelated to the pelvic pain, I also have chronic tinnitus, rosacea, mild TMJ, and year round allergies that come and go with no specific cause.

    Some of my symptoms are painful, others are merely sensations like tingling, etc. All of these symptoms come and go and they may or may not occur at the same time.

    I have gone through what is likely considered the typical path when I started to feel have these symptoms. I went to the doctor three times, ruling out infections, and receiving a full pelvic exam and was told I am very healthy with no issues found. After that, I tried to problem solve on my own. I tracked my behaviors, hygiene, foods, everything for multiple months and found no correlations AT ALL. The only correlation that existed on any level was that the pain appeared cyclical, always worsening around my period, particularly right after it. I went through phases where I was convinced there were other triggers like exercise, shaving, alcohol, coffee. But even when I abstained, the flares still came. Currently the only trends I can identify are that I am at the highest risk on weekdays when I start working in the morning, after my period, and when I return from vacations or work travel of any sort.

    Eventually I found the book A Headache in the Pelvis and it was the first time I felt like there was a community that understood what I was experiencing and that had a solution. I felt hopeful. And my symptoms lessened for a period of time while I read that book. Some of the protocol in that book aligns with TMS methods to recover - like the relaxation techniques. I incorporated that, albeit inconsistently, along with trigger point therapy (internal and external), and stretching every day. Over the course of these months, part of me cannot tell if I have improved moderately or if I’ve just grown used to it. There are a handful of symptoms I hardly even experience now, but the two worst continue to come and go - bladder issues and genital pain/discomfort. The one saving grace is that I no longer have spontaneous and intense flare ups, they come on slow and can linger for anywhere from a few hours to a few days, but they don’t hit me like a ton of bricks anymore.

    By the time I found TMS, I felt like I had already been trying to incorporate some of the principles into my life, and do credit those things for the minor improvements I’ve seen. By that time I was trying to meditate more, practice diaphragmatic breathing, NOT google or allow myself to fixate, and just started to live my life without fear of the pain or trying my hardest not to let it ruin my mood. I’ve slowly returned to a normal sex life by no longer fearing stimulation, I’ve started to wear tight clothing again, I’ve stopped trigger point therapy (I do still stretch because I like the routine, it relaxes me). I try to think positively and tell myself the flare will pass. I truly do believe that my efforts to stay calm in flares help them pass faster than they used to. I do believe I have TMS. But, like many people I’m sure, in the middle of a flare, I doubt it and I worry I am different and that I really do have a structural issue. Or I simply worry I won’t be able to overcome this. I do feel the pain and sensations move around, but how do I fight the fear that the next symptom is “real”? Or that I’m neglecting to find a true physical problem? Or - what always gets to me - going down the path of worry that this will get worse and worse and my quality of life will diminish.

    Here is why I believe my pelvic symptoms are TMS:

    - it all started with a thought - no joke! I thought to myself one night as I was going to bed, that it would be terrible to get a UTI. I’d only gotten one once and was randomly remembering the discomfort. Truly random. That next day, I was convinced I had a UTI (I didn’t)

    - the pain comes and goes and the symptoms move around

    - the flares correlate with stress, and particularly when I anticipate a flare, like around my period, when I’m worried I’ve done something to trigger pain, etc.

    - doctors have ruled out structural or infectious causes

    - at times that I have felt hopeful that I’ve found a treatment path, the symptoms subside temporarily

    - when I am busy or out and about, the pain tends to lessen even on a bad flare day

    - the pain or bladder urges never wake me up, telling me it is psychological

    - the symptoms worsen when I fixate on them and reduce, even if still present, when I do not allow myself to focus or fixate

    - last and probably most importantly, I believe the triggering event to be a very stressful experience that left me “traumatized by my own anxiety” … to make a long story short, I experienced a very anxiety inducing environment about 6 months prior to symptom onset. It was a situation where I had no control, I felt weak and ashamed, and I experienced anxiety that escalated into a panic. A level I had never known. The symptoms of the anxiety were so physical - loud constant heart beating, legs like jelly, and two full blown panic attacks. And this lasted for weeks. It caused me to be unable to sleep for over a month because I could not calm my nervous system enough to fade off. I did not turn to medications…instead, I told myself I simply had to live with the anxiety and it would go away eventually, I told myself it was ok if I didn’t sleep, I would eventually, every night. Over the course of months and months I slowly recovered. But I never felt calm. I was sleeping again, but the hyper vigilance had been awakened in me. I had taught my nervous system that the only way to be safe was to not allow myself to FEEL safe. As I finally started to begin to feel normal again, the symptoms came on strong. And the journey I just laid about above has brought me to writing this post.

    I am really just starting this TMS endeavor. I just downloaded Alan Gordon’s book The Way Out. Between the 4 “pioneers” in this field, his thinking and methodology seems like it will speak to me most. That said, I’m interested to learn more about what worked for others, especially those who have had similar symptoms or stories as my own. Any advice or validations that what I have is in fact TMS would be greatly appreciated!
  2. Cactusflower

    Cactusflower Beloved Grand Eagle

    You’ve done an excellent job outlining why you may have had an onset of symptoms. A traumatic event can really throw the nervous system off.
    I urge you lo look back and see if you frequently experienced similar bit less intense types of reactions in your past. It will help you see if you have regularly carried more within your in and body without processing things.
    There is a new men’s oriented pelvic health tms channel which is excellent, and will absolutely help women too.
    The Way Out addresses fear, mainly of symptoms but does not address traumas and emotional work that may be needed. I’d start with it as a firm foundation and see where it takes you. Go slow, with great care for the sometimes challenging work. You are challenging some deeply ingrained stuff, sometimes it stirs things up for a bit but reminding yourself you are ok, all of this is bending and will pass, helps. good luck!!
    ARCUser831 and JanAtheCPA like this.
  3. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Worth repeating!
  4. ARCUser831

    ARCUser831 Peer Supporter

    Thank you! I will give the TMS channel a look/listen! I am conflicted on the emotional aspect and trying to determine effective ways for working through that. I have been trying to journal and am not feeling it very useful or revelatory.

    The idea about analyzing other times in my past that I've felt similar provides me with a great place to start, as that has always been the most uncomfortable feeling for me to sit with - once the anxiety passes a certain threshold, it feels unbearable.

    Appreciate your insight!

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