I was a 27-year-old working as a freelance photographer and writer in Phoenix, Arizona, when I started having irregular periods. It was the spring of 2018, and I began to have spotting outside of my normal menstrual cycle, unbearable cramping before and after my period, cystic acne, and extreme fatigue. For months, even routine activities like taking a shower left me totally exhausted.
At the time, I thought that maybe my health issues were brought on by my diet or stress, and they’d pass if I just changed up some things. For instance, I tried eliminating dairy and gluten, but nothing changed.
Four months into my strange symptoms, I started to seriously question what was going on. After a lot of Google searches, I was convinced that I had polycystic ovary syndrome (PCOS), a hormonal disorder that causes irregular periods. I wanted to see a doctor ASAP.
That June, I visited my ob/gyn’s office, where they ran through tests, including blood work.
After my results came in, the nurse practitioner told me that my blood contained high levels of prolactin, a hormone that typically triggers your body to produce breast milk when you’re pregnant (though I wasn’t pregnant or producing any breast milk). Then my heart skipped a beat: She told me she suspected I had a brain tumor and we should do further testing. My mind went to the worst possible place. A brain tumor, really?
Leaving the office, I was flooded with questions and anxiety. I knew that I needed to act fast to get a diagnosis and proper treatment. A week and a half after my initial appointment, I returned to my ob/gyn’s office for additional blood work. Again, my prolactin levels were higher than normal.
The next step was an MRI, which revealed that I did indeed have a brain tumor.
I had a prolactinoma: a small, benign tumor that grows in the pituitary gland of the brain.
Thankfully prolactinomas are not cancerous. And it’s not totally clear why they develop in some people. But if left untreated, it could wreak havoc on my hormones, driving up prolactin levels and causing a decrease in sex hormones like estrogen, as my doctor explained. And I already knew all too well the hormone impact this tumor could have, given the out-of-whack periods and other body problems I was experiencing. Over time, the tumor could even grow large enough to impact my vision (a scary thought, to say the least).
Because this wasn’t something my ob/gyn’s office could treat, I had to find an endocrinology specialist to figure out next steps. In late July 2018, I connected with an endocrinologist but wasn’t satisfied with the level of care she offered. She didn’t explain anything about what having a prolactinoma actually meant. It felt as if she just wanted to treat me hastily and move on. I didn’t feel comfortable, so I kept looking for a better fit.
A week or so later, I was talking with a friend and told her that I was unhappy with my treatment plan so far. She recommended the Mayo Clinic, as she had a family member who had been treated there for cancer, and he was happy with his experience and care. Down to give it a try, I submitted an application to be a patient at the Mayo Clinic in mid-August 2018. By the end of the month, my case had been reviewed, and I went in for my first consultation.
My new medical experience was like night and day compared to my first one.
Over the course of a month, I met with doctors from three medical departments (neurological surgery, neurology, and endocrinology). Each of them explained what was going on in detail, and I was able to examine the imaging scan of my brain and tumor alongside them.
Because my tumor was too small to be surgically removed, my doctors decided that the best course of treatment for me was to take a medication that helps lower your body’s prolactin levels and may stop the tumor from growing or even shrink it.
Chances are, I’ll have to take this medication for the rest of my life to keep my tumor in check. I may also have to switch up meds (or stop taking meds for a while) if my husband and I try to have kids, though my doctor says we can discuss this more in-depth when the time comes. I also visit my endocrinologist every six months for blood work, and I get a routine MRI every year or two to monitor my tumor.
These days, my cycle isn’t 100 percent back to normal, but it’s pretty close. Instead of constant spotting and bleeding, I just have light spotting in the days leading up to my period. My acne faded within a couple of months, too. While my medication does come with some side effects, like headaches and drowsiness, the extreme fatigue has waned as well.
As helpful as my doctors were, I still found myself hunting for more information and other people going through the same struggles.
When I was first diagnosed with a prolactinoma, I didn’t know anyone who was going through this. As I began to seek out resources on prolactinomas, I had a hard time finding any. This inspired me to create my own.
Today, I use my Instagram and a podcast called Fit Me Daily to connect with other women who have prolactinomas and to share the resources I wish were out there when I was first diagnosed with mine. Putting these platforms together has been therapeutic for me, and I hope that other women might find them helpful as they navigate their own health journeys.
My takeaway: If something doesn’t seem quite right, it’s probably not. Trust your gut, advocate for yourself, and seek out treatment options that you’re comfortable with. I’m so glad that I did.
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