- For 11 years, I dealt with pain that got worse and worse.
- At one point, I became bedridden and my husband had to take care of our twins.
- In 2022, a pelvic-pain specialist found that I had a compressed nerve.
For 11 years, I sought answers for strange pains. Over and over, I explained the problem to doctors: persistent pain in the right groin, pain that spiked when I sat for more than a few minutes or walked more than a block or two. I was sent for multiple imaging tests, which came back negative.
At first, my symptoms were mild, but as the years passed, the condition worsened. It became difficult to care for my twin daughters, who were born when my symptoms were in semiremission. After a particularly bad flare, I became essentially bedridden. The bulk of childcare duties fell upon my husband.
I was told the nerve pain was all in my brain
As tests came back negative, my providers told me the pain stemmed from "faulty cognitions" or a "dysregulated brain." A pain psychologist at a major university hospital wrote in her notes: "Ms. Cutchin has symptoms and behaviors known to be unhelpful for pain including fear avoidant behavior, pain anxiety." Another provider referred me to a pain-management app, saying it could "remodel" my brain through pain-education lectures.
I'm one of thousands of patients who've been referred to psychological or "brain-retraining" tools. In the face of a chronic-pain epidemic, researchers and clinicians are embracing these tools, in some cases as first-line interventions. The idea behind mind/brain treatments is to teach patients that chronic pain is a "disease of aberrant connectivity and dysregulated learning"— an illness in which patients' thoughts and beliefs about their pain trap the mind/brain in a cycle from which it's hard to break free.
I tried both the app and cognitive-behavioral therapy, the gold-standard psychotherapy for chronic pain. Neither improved my symptoms. Deep down, I knew the problem was in my body, not my mind.
I was diagnosed with a compressed pelvic nerve
Finally, in 2022, a pelvic-pain specialist uncovered the root source of my pain: compression of a key pelvic nerve. The theory is that the nerve became entrapped in scar tissue because of repeated stress on the pelvis during my years of long-distance cycling. Entrapment typically doesn't show up on imaging; it can be confirmed only through surgery.
I fell victim to the so-called black-box problem: If you can't see it, it's not there.
The decompression surgery worked. A year out from the surgery, I'm no longer confined to my bedroom. I'm able to walk without pain and care for our young daughters.
I'm angry that doctors didn't believe my pain was real
Even as my health improves, I feel a lingering sense of anger: Why did my practitioners blame my pain on "faulty thoughts"?
The "chronic pain is all in the mind" approach harms many, like me, who suffer from complex or hard-to-diagnose conditions. Women with endometriosis wait, on average, 10 years for a diagnosis; the average time to diagnosis for fibromyalgia, which predominantly affects women, is five years. Telling such patients their pain is generated by the brain enables practitioners to skirt time-consuming diagnostic processes.
There's a simple way to help patients like me: Listen to us. Few people will experience the kind of intimate bodily knowledge that comes with enduring years of discomfort.
We've learned to listen to our bodies; it's time to listen to us.