Cushing’s Disease and Me

I have had a hard journey with my body, and my journey is not even close to being over. I am not afraid, but I want this opportunity to tell women about this disease, and how important it is to not give up on your body, to not give up on yourself.

In November of 2017, I posted PCOS and Me, a post on how I had been diagnosed with PCOS (Polycystic Ovarian Syndrome). This may still be an accurate diagnosis, but I do not know for sure; however, what I do know is that there is a benign – or non-cancerous – tumor on my pituitary gland. This tumor has lead me to be diagnosed with Cushing’s Disease.

What’s terrifying to me is that the symptoms for both PCOS and Cushing’s Disease are horribly similar. Going further, how many women have been diagnosed with PCOS and never delve further? What if it’s not just PCOS?

Symptoms

Cushing’s Disease	PCOS

If I hadn’t been put into contact with an endocrinologist who wanted to treat the root of my problems rather than my symptoms, I may never have known what was truly wrong with me.

Looking back, it’s awful for me to see when it began in 2010. That was when I started having breakouts – an affliction I had never endured in high school – as well as horrible bouts of depression and anxiety and weird weight-gain. The doctor at the time said my hormones weren’t balanced, so they put me on birth control and anti-depressants.

When that didn’t remove the acne, I went to a dermatologist. But the dermatologist told me that I was overweight and should just exercise more and the weight loss would make my acne go away. So I exercised, but in a dangerous way.

I created a daily routine that consisted of running 3 miles a day, hardcore cardio, and weight training. Unfortunately, I also stopped eating enough food to handle the workout.  I became the smallest I’d ever been in my young-adult life (size 8 jeans at 5′ 9″ tall with wide hips/shoulders), but the acne persisted and the tummy fat wouldn’t go away no matter what I did.

That routine ended abruptly when my knees locked mid-run and I couldn’t move.

As time went on, I gave up and resigned myself to the fact that my acne, depression, weight-gain, and facial hair was a state of being that I couldn’t fix. I accepted that I would always feel like this and would never again feel “good.”

Then, in 2016, I stopped taking birth control and my symptoms increased. Still, I did nothing because I felt it was pointless. It wasn’t until I was running every day for 3 miles and losing no weight that I realized something really was wrong. In addition, my blood pressure had sky-rocketed. I went back on birth control, and they added a low dose of blood-pressure medication.

I then decided to revisit the dermatologist. When they saw my naked body, they looked at me with pity. They asked me how I had gone on this long without treatment. My response? I cried. The initial diagnosis was that I had PCOS, but they sent me to see a gynecologist who confirmed the diagnosis with one look at my body. The birth control I was on was changed to something with higher estrogen, and he added Spironolactone – to my regret.

After 3 months with no improvement, I chose to stop taking the Spironolactone and soon discovered that in doing so, I quadrupled my breakouts, gained an obscene amount of water-weight, and my blood-pressure increased. Immediately, I made an appointment with the dermatologist who told me to stay on it for now, and go see an endocrinologist.

Dr. Lisa Abbott is my savior. She was the first doctor to actively look at my symptoms and question my current treatment and diagnosis. After many blood tests, she decided that an MRI would offer the most clarity as to the situation. Thus, I paid over $1,000 to get it done. It was worth the cost because I finally had an answer: a benign tumor.

Armed with this information, I am going to work with Stanford to surgically remove this unwanted growth.

I pray that I will return to some semblance of who I used to be.

If there is any advice I can give to women who are struggling from the above symptoms, it is that they should talk to their doctor about looking at all possible reasons for their suffering. If it is PCOS, then the usual treatment should work after the suggested time has passed (usually 3-6 months). If it isn’t, KEEP LOOKING. You cannot give up just because someone says there’s nothing else that can be done to help you.

No one should have to go through life being in pain and miserable.

Stand up for yourself.

Don’t give up on you… because you’re worth it.