tl;dr summary: I suffered with chronic sitbone/buttock pain for four years, becoming suicidal, until I finally learned about TMS (Tension Myofascial Syndrome). Through TMS treatment, my pain resolved but in breaking the pain cycle I realized that I had C-PTSD and a poor relationship with my body from childhood trauma. I am continuing my TMS journey in attempting to heal my trauma and calm my hyper-vigilant nervous system. Slowly, my body is unclenching.
Now the long version:
I was raised in a household with a physically and emotionally abusive mother and a father who worked all the time and was not very present. I have several younger siblings I had to protect from this violence. We were all raised with an extremely high expectations in a religion with a tremendous emphasis on perfectionism.
As adults, the impact this upbringing had on us as children is quite clear. There are major psychological problems in all of the kids, but they range in severity and manifestation from eating disorders to borderline personality disorder to major depressive and anxiety disorders.
I thought I had emerged somewhat unscathed from these psychological problems. Other than some mild social anxiety, I thought through some miracle of resiliency, I was completely functional and fine.
Boy was I was wrong.
In 2011, my husband and I decided to try to start a family. After a year of no success, we were referred to an infertility clinic. I suffered through several painful, stressful tests to try to pinpoint a cause. There was none, but it was suggested we proceed with infertility treatments anyhow. We started a treatment called IUI, a type of artificial insemination.
During my IUI treatments, I started feeling a strange sensation. It was a strong pain that I was getting in my left rear buttock when I sat. It felt like there was a golf ball in my ass. I could not sit comfortably ever and I was never without pain when sitting. The pain got worse and was not resolve. So I sought medical help. I was diagnosed with hamstring tendonitis and sent to physical therapy. It did not help. My pain grew worse. All the while we continued IUI treatments without success.
After four treatments, my pain was so intense, we decided to put off infertility work while I tried to get it under control. I saw several doctors, PTs and chiropractors over this period and was “diagnosed” with:
- hamstring tendonitis
- piriformis syndrome
- bursitis of the ischial tuberosity
- SI dysfunction
- Pudendal Neuralgia
- Hypermobility/Ehlers Danos Type II
I pursued treatments for all of them and my pain did not resolve with any particular treatment. I had lower back and pelvic MRIs that revealed nothing. The pain did sort of eventually fade off on its own, however, so we decided to continue infertility treatments, moving into IVF.
When I started IVF, the pain began again. It always got worst towards the back half of my cycle when I was taking progesterone, so we theorized that the pain had something to do with the progesterone hormone. I tried to push through it and we harvested 26 eggs, eventually making five healthy embryos.
When we started doing embryo transfers, the pain began again. It was unrelenting. Not being able to sit without pain was extraordinarily debilitating. I could not go out to dinner. I could not drive. I could not sit in a movie theater. I could not enjoy television at home and relax. I could not be seated to do my work and had to use a standing desk all day which was exhausting. The pain and the frustration of having now answers was taking a extraordinary toll, and over time I became suicidal. We put fertility treatments on hold again.
We sought answers again. I pursued ultrasound-guided cortisone injections, chiropractic adjustments, physical therapy, massage, yoga and stretching, dry needling, pilates, all kinds of bodywork, vaginal biofeedback, opiates, nerve medication, steroids, etc. I contemplated exploratory surgery.
While some treatments seem to have limited short-term impact, the pain always came back. At this point I had been in intense pain for nearly four years. I never traveled anywhere without a donut pillow. I almost never exercised. I was in my mid-30s. I spent all of my time scouring google, desperate to find answers for what was plaguing me.
In one of my furious google rampages, I stumbled onto Tim Parks’ book: Learn to Sit Still. He was an author I already enjoyed, and the book was about his experience with a chronic pelvic pain (more male-oriented, but hey, I was desperate) that he was able to resolve through learning how to meditate. In desperation, I purchased and read the book.
It was interesting. In it, Tim describes his personality which was nearly identical to mine. Constantly rushing places, perfectionist, impatient, never aware of his body, never at ease. He stumbled into meditation and learned that through meditation that he could influence the pain in his pelvis. Eventually through consistent practice, he was able to resolve it entirely and became more relaxed as a human.
I decided to start experimenting. And on my second session, I realized that when I meditated, I could actually change or influence the experience of pain in my pelvis. Sometimes I could make it go away. Sometimes I could make it switch sides. Sometimes I could change the quality or intensity of the pain.
This got me thinking — what if the pain wasn’t in my body at all? What if it was in my mind? And my mind was the key to getting it to stop?
It was painful to acknowledge that my pain might be some sort of psychological condition. After all, it felt REAL. It was real pain, in a specific area, brought on by specific things, that I could FEEL. It hurt! It tortured me! It wasn’t some phantom thing.
I went back onto Amazon one day and happened to look at the “People who purchased this book also purchased…” section for Tim Park’s book. The first one in that section was by John Sarno called “The Mindbody Prescription: Healing the Body, Healing the Pain”. It cost $4. I shrugged and downloaded it onto my Kindle.
Four months later, my pain was completely gone. John Sarno’s work saved my life.
Dr. Sarno popularized a condition called TMS, or Tension Myofascial Syndrome. Others have called it Mind Body Syndrome, but it’s the same thing. Essentially, when you are doing something you strongly don’t want to be doing, or when you are strongly suppressing an emotion you don’t want to be feeling, TMS pain emerges as a way to give you an ‘out’ from those situations. It provides a distraction which allows you to not deal with the thing you don’t want to deal with. This all happens at an unconscious level so you don’t even realize it’s going on.
Then over time, neural nets reinforce this pain, so when you start thinking a certain way, it automatically crops up.
A lot of his patients had back pain spring up when they were stressed about work or angry with a family member. There was nothing structurally wrong with these people and yet the pain was real.
The key to TMS is to believe that it is the source of your pain and believe it beyond a shadow of a doubt. I had reviewed all of the literature, read several books on the subject, and concluded that this was definitely what was going on with me. But still the pain persisted.
The nail in my pain’s coffin was seeing Dr. David Schecter, another physician who specializes in TMS work. He very thoughtfully and thoroughly reviewed my case and concluded that what I was going through probably started as hamstring tendinitis and had absolutely evolved into TMS. He expressed curiosity about how it had occurred during infertility treatments.
“Is there something that happened in your childhood that made you conflicted about becoming a mother?” he asked.
I swallowed. Nobody had ever asked me that question before, and I suddenly realized: I had doubts about being a mother. I had spent my whole childhood with an abusive mother, struggling to protect my younger siblings from her. I was parentified and had to care for them from a very young age. And going through so much pain and agony in infertility treatments to try to get back to a state where I putting myself aside to care for others again was a terrifying notion.
And none of it sank in until that moment. I spilled it all to Dr. Schecter and he nodded and said “Certainly, your ambivalence about becoming a parent mixed with the stress and pain of infertility treatments would cause TMS.”
The next day, my pain was gone.
The pain that had crippled my life for the last four years vanished overnight.
Now, recovery wasn’t quite that simple. The pain existed in well-worn neural nets and it resurfaced (and still does) from time to time. I’ve had to work to identify triggers and try to avoid them. But because I know it’s in my brain now, it always goes away.
Dr. Schecter pointed out that TMS, in cases of childhood trauma, can be much a tougher nut to crack. He recommended that I see a therapist who works with trauma and EMDR. My therapist has helped me realize that TMS was just a symptom of a much larger problem: that of PTSD and dealing with the stored-up trauma from my childhood.
This blog began with TMS but it is chronicling my journey to conquer my PTSD and return my body to a relaxed, normal state.