My Story of Chronic Tailbone Pain and Endometriosis

My Story of Chronic Tailbone Pain and Endometriosis

Ever since my childhood, pain has been a constant companion that few seemed to be able to explain.

When I was 6, I suffered from stomach cramps. My pediatrician reckoned they were probably due to me being an over-emotional kid. Then, after my first period, I spent my teens in excruciating pain. Told they were “just bad periods,” I began taking strong doses of ibuprofen just to cope. 

By my late 20s, I thought I knew pain. Suffering? I basically had a postgraduate degree in it. Discomfort? I could write essays on the subject. However, the universe set out to prove me wrong, and a new kind of pain decided to join the party, originating from my tailbone. 

I was working in fashion when my tailbone decided to stage a coup.

I styled people, doing the same with the shop floor, as well as carrying mannequins and deciding what merchandise to dress the windows with. It was a physically demanding job, and I loved it dearly. But the pain, which started intermittently, began to get in the way. 

My tailbone had found its voice, and it did so by screaming at me. The rear end of my spine made its presence known each day with a sharp, pulsating pain. Eventually, I began to take time off work to have myriad tests done, including scans, ultrasounds, and countless X-rays. 

One doctor was certain the pain was in my head. Another thought it was scoliosis, pairing his diagnosis with the puzzling advice that I should eat more bacon. What felt like a world of professionals looked at images of me as I was literally stripped to the bone, yet they failed to offer a clear answer. A back specialist suggested spinal surgery to fix “whatever was wrong.”

Between each medical appointment, I went back to my job, feeling the pressure from my superiors on the back of my neck, and wanting desperately to do the job I so loved. Over time, my pain worsened, expanding to my hips and giving me what I jokingly called my “sexy limp.” 

I couldn’t sit. I walked with difficulty. Heartbreakingly, I gave up my job.

Finally, one of the scans showed a glimmer of hope in the shape of swelling around the sacrum. But all I got from having radioactive dye injected in me were more shrugged shoulders. My general practitioner was convinced I had fallen on my backside and possibly forgotten. Not only did no one seem to take my pain seriously, but also I felt mocked.

Two years later while living in Barcelona, and after losing yet another job, a massage therapist shed some light. He felt that doctors had wasted time fussing over my bones. He believed the root of my issues was somewhere within my deep tissue. I remembered him looking at me, a puzzle he desperately wanted to solve. The fact that he believed the severity of my pain and tried his best meant the world. 

Jarvis, the visual definition of “sitting uncomfortably.” (Photo by Jessie Madrigal)

Cut to five years later, and during a post-surgery appointment with my specialist, a plot twist: My sacrum was covered in adhesions.

I contacted my massage therapist in Spain. He told me that since he had last seen me, he had treated more women with similar complaints. He had read up on endometriosis and wondered whether that could have been the root of my pain.

In fact, a rare form of endometriosis called deeply infiltrating endometriosis affects the uterosacral ligaments. And where are these ligaments located? You guessed it — around the tailbone. 

While surgery helped with some symptoms, my tailbone pain never went away.

The pain flares up if I sit in the same position for a few hours, which makes long distant traveling a form of torture. Sometimes I can’t even explain why it awakes, and all I can do is lie down until my tailbone stops yelling at me. 

Yoga and Pilates have been lifesaving in terms of improving the mobility of my hips, but I am aware that my tailbone is a very expressive one, and will probably remain so for a very long time.


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