My son and I like to joke that his big old cranium broke my pelvis. Turns out, he’s not that far from the truth.

Like many women, my SI joint pain started during pregnancy and only got worse from there. After delivery, I reached a point where I was using wheelchairs and electric scooters and could barely make it through a grocery store.

I tried just about everything. Chiropractic care, SI belts, medications, physical therapy, injections, ablations, and plenty of things in between.

Meanwhile, I kept being told I was tired. That I had anxiety. That maybe I needed an antidepressant. I was living with severe pain, but because my scans looked normal, I was repeatedly told there was nothing physically wrong with me.

It wasn’t until I found Facebook groups filled with other SI Joint Dysfunction patients that I finally started finding answers.

For the first time, I was hearing from people describing experiences that sounded like mine. I learned what questions to ask, what treatments existed, which providers actually understood the SI joint, and something that still surprises many patients today: some medical providers don’t even recognize SI Joint Dysfunction as a legitimate pain generator.

Eventually, my search for answers took me from Tampa, Florida, all the way to Montana, where I underwent an experimental SI joint surgery in 2017.

It changed my life.

I went from relying on wheelchairs and electric scooters to training for my first 5K seven months after surgery. I eventually went on to run half marathons and became one of the first runners using the SI joint hardware I had received.

But my involvement with SI Joint Dysfunction didn’t end with my recovery.

Over the years, I became deeply involved in the patient community, helping lead and administer Facebook groups that have grown to nearly 17,000 patients. I also served for several years as a volunteer patient ambassador for Medtronic, spoke to hundreds of Medtronic employees and members of its sales organization about the patient experience, and spoke at an international SI joint summit alongside leading surgeons in the field.

I became deeply involved in the research, too. During my own insurance battle, I compiled clinical research supporting my treatment and ultimately won my post-operative appeal against Cigna nine months after surgery. My surgeon later used research I had compiled to help support insurance appeals for other patients who came after me.

Through all of it, I kept seeing the same problem.

The information exists. But finding it is incredibly difficult.

Research is scattered across medical journals. Provider information is passed between patients. Treatment options can be confusing. Patient experiences live across years of Facebook posts and conversations. And because SI Joint Dysfunction can be so difficult to identify, it can take years for the average patient to finally receive an accurate diagnosis, much less find a treatment that works for them.

That’s why I created SIJD Hub.

I wanted to take what I’ve learned from nearly a decade in this community and help bridge the gap between patients and the information they need. If SIJD Hub can help someone find an answer sooner, discover a knowledgeable provider, learn about a treatment option to discuss with their medical team, or simply know what question to ask next, then it’s doing exactly what I built it to do.

Because SI Joint Dysfunction is complicated.

Finding answers shouldn’t be.

-Trish Powers, Founder of SIJD Hub