You Don’t Have to Do It Alone (Part 2)

Second in a series. Read part one.

The day I met my endocrinologist, in June 2016, I showed up prepared with all of my research about polycystic ovary syndrome (PCOS). I was ready to do whatever it took to get better. Within two minutes of our appointment, he asked, “Have you ever considered that you have Cushing’s disease?” That’s the moment I knew it was exactly that. My gut was screaming at me.

He proceeded to explain how PCOS and Cushing’s link, and where they differ. He did tests to rule out either one of my two options, but of course, everything came back in my blood work pointing to Cushing’s.

We then did a 24-hour urine test, and my cortisol came back three times higher than it should be. So, we followed this with a dexamethasone suppression test, which helps indicate whether the harm is coming from the pituitary or adrenal glands. We did that test in two separate weeks with two different doses that pointed to a pituitary tumor. My final step to diagnosis was my magnetic resonance imaging (MRI). I had my MRI sometime in early August, and within a week and a half, I had my results.

Aug. 15. I’ll never forget it. My endocrinologist called me just before I headed to work to tell me I had a 4 mm pituitary microadenoma causing all of my problems. I cried hysterically with happiness in the kitchen. There was finally a concrete reason for all of my health issues. The weight gain, the moon face, why I didn’t look or act like my “normal” self. I no longer fully felt like a lazy, inflated, hideous human being anymore. I still felt horrible about myself, but now I had an answer to give to people: Cushing’s disease.

From the day I got my diagnosis until the day I met my neurosurgeon, I had to wait two months. I redid all of the same tests and an MRI to ensure she had an understanding of my body. Nov. 7 was the next time I saw the neurosurgeon, and she had bad news. My tumor was suddenly “gone.” I lost it. I remembered, though, that they didn’t give me contrast — the liquid injected into your veins that allows you to see little tumors. Without it, it’s like looking for your keys in the dark. I told her this, and she had me redo every single test a third time, plus an additional CT scan to ensure it wasn’t in my lungs or adrenals either. It was an absolute nightmare.

On Dec. 12, I went back to see her, and somehow my 4 mm tumor had turned into a 2 mm tumor. From there, she let me decide if I wanted her to attempt surgery on me, and of course, I gave her the go-ahead. I was so sick, there was no harm in trying. By Jan. 12, 2017, I got the date for my surgery, and the next two weeks flew. Before I knew it, it was Jan. 27 and surgery was done.

They removed the entire tumor, and I immediately felt better, even as I floated in and out of consciousness in the recovery room. Recovery from the surgery itself is pretty rapid (should you have no complications with infections) but remission from this disease is an absolute rollercoaster — it isn’t easy.

If you’re reading this because you’re suffering from Cushing’s, I understand you. I understand your pain. I understand your frustration. Anything you’re worried about, trust me, I have gone through it and believe it or not, still do. I wish my body felt as good as I look.

I hope that I can connect with even more Cushing’s sufferers with this column. No one has to go through this alone. It truly is a disease you have to personally experience to understand how someone else with Cushing’s is feeling. You’re not crazy, you’re not lazy, and you’re not alone. I can’t wait to continue writing about my experiences and hopefully bring some light into people’s lives.

You can learn more about me, and contact me, at my website or on Instagram (@crushcushings).

XO, Catarina

One day post-operation in January 2017, left, vs. one year post-operation in January 2018, right. (Courtesy of Catarina Louro-Matos)

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