MaryO’s Story

On the 38th anniversary of my pituitary surgery…

How I Became a Reluctant Medical Detective—and an Empowered Advocate

For most of my early life, I was the model patient: quiet, compliant, and full of trust. If a doctor prescribed it, I took it. If a test was ordered, I got it done. After all, these were trained professionals—they must know better, right?

But in 1983, everything changed.

It began with a missed period. Naturally, I assumed pregnancy—but my gynecologist found nothing unusual. Then came exhaustion so intense I’d nap in the car during my son’s 30-minute choir rehearsals.

And that was just the beginning.

I started growing facial hair. My face rounded out into what’s known as a “moon face,” and I developed a “buffalo hump” on my back. I gained weight rapidly, despite dieting and daily workouts. I bruised easily, hurt constantly, and couldn’t shake the feeling that something was deeply wrong.

Yet every doctor I saw dismissed me. “It’s rare.” “It’s in your head.” “Try Xanax.” I even heard, “You’re just stressed. Think happy thoughts.”

I wasn’t just sick—I was invisible.

Then, a spark: a tiny article in Ladies’ Home Journal listing symptoms that matched mine. The word “Cushing’s” leapt off the page. That moment changed my life.

Armed with library books, photocopied medical texts I barely understood, and sheer determination, I started asking doctors about Cushing’s. Most told me it was too rare. Some outright laughed. But I kept pushing.

For three years, I battled skepticism. My own husband doubted me. A neurologist dismissed the idea because his MRI showed nothing. Still, I persisted.

Then in 1987, things got dangerous. I started bleeding under my skin—bruises spreading by the hour. My internist was finally alarmed enough to send me to a hematologist. That doctor did something miraculous: he looked at me. Really looked.

He ran a 24-hour urine test and finally—finally—recognized the signs of Cushing’s. A referral to an endocrinologist confirmed it. The problem wasn’t adrenal, but likely pituitary.

That led me to the National Institutes of Health. NIH was conducting a clinical trial on Cushing’s, and I was accepted. I spent six weeks as an inpatient. Tests. More tests. Blood draws. Catheters. A terrifying Petrosal Sinus Sampling to locate the tumor. I gained a pound a day. One woman died during surgery while I was there.

On November 3, 1987, I had transsphenoidal surgery to remove a pituitary tumor. I was ready to die on that table. Instead, I lived—and something awakened in me.

That was the beginning of my second life.

The Birth of a Movement

Back then, there was no internet to connect us “Cushies.” I felt alone, like I’d fallen through the cracks of modern medicine.

In 2000, I decided to change that.

With the help of my friend Alice, I launched a website—Cushings-Help.com—a tiny online home for the misunderstood and undiagnosed. What started as a single page became a thriving network. Forums. Podcasts. Live chats. Conferences. Phone support. Social media communities. Today, thousands of patients from around the world come together to share, learn, and be seen.

I’ve met over 100 Cushing’s patients in person—more than most endocrinologists see in their entire careers.

I never set out to be an advocate. But once you’ve lived through what I did, you can’t not speak up. I wanted to be the person I so desperately needed back in 1983.

Life After Diagnosis

I thought surgery would fix everything. It didn’t.

I still live with the aftermath of Cushing’s. Years later, I was diagnosed with adrenal insufficiency. Then, in 2006, a CT scan revealed kidney cancer—a 10-pound tumor I didn’t even know was there. Surgery saved me again.

The journey has been long. I’ve faced growth hormone deficiency, painful insurance battles, dismissive doctors, and more setbacks than I can count. But I’ve also experienced grace, community, and the extraordinary resilience of patients who refuse to be silenced.

Why I Keep Going

I keep telling my story so that no one else has to wait three years—or longer—for a diagnosis. So that no one else has to question their sanity because their doctor won’t question their assumptions.

I keep telling my story because patient empowerment isn’t just a buzzword—it’s a lifeline.

Today, empowered patients are changing the face of medicine. They’re reading, asking questions, connecting online. They’re refusing to accept “It’s just stress” as an answer. They’re finding their voices—just like I did.

And maybe, just maybe, we’re not so rare after all.