'After Months Of Having Irregular Periods, I Found Out They Were Caused By A Small Brain Tumor'

Photo credit: Lauren Topor
From women's health
I was 27 years old and was working as a freelance photographer and writer in Phoenix, Arizona when I started having irregular periods. It was spring 2018 and I got spots outside my normal menstrual cycle, unbearable cramps before and after my period, cystic acne and extreme fatigue. Even routine activities like showering have totally exhausted me for months.
At the time, I thought that my health problems might be caused by my diet or stress, and they would go away if I only changed a few things. For example, I tried to eliminate dairy products and gluten, but nothing has changed.
Four months after my strange symptoms, I started to seriously question what was going on. After doing a lot of Google searches, I was convinced that I had polycystic ovarian syndrome (PCOS), a hormonal disorder that causes irregular periods. I wanted to see a doctor as soon as possible.
In June I visited my gynecologist's office where tests, including blood tests, were done.
After my results were received, the nurse informed me that my blood contained high levels of prolactin, a hormone that normally causes your body to produce breast milk when you are pregnant (although I was not pregnant or did not produce breast milk). Then my heart skipped a beat: she told me she suspected I had a brain tumor and we should do more tests. My thoughts went to the worst place. A brain tumor, really?
When I left the office, I was full of questions and fears. I knew I had to act quickly to get a diagnosis and proper treatment. One and a half weeks after my first appointment, I returned to my gynecologist's office for additional blood tests. Again my prolactin levels were higher than normal.
The next step was an MRI, which showed that I actually had a brain tumor.
I had a prolactinoma: a small, benign tumor that grows in the pituitary gland of the brain.
Fortunately, prolactinomas are not cancerous. And it is not entirely clear why they develop in some people. But if it is not treated, it can destroy my hormones, increase prolactin levels, and lower sex hormones like estrogen, as my doctor explained. And I already knew all too well what hormonal effects this tumor could have, given the unbalanced periods and other body problems I had. Over time, the tumor could even become large enough to interfere with my vision (to say the least, a scary thought).
Since this could not be treated in my gynecologist's practice, I had to find an endocrinologist to figure out the next steps. At the end of July 2018, I contacted an endocrinologist, but I was not satisfied with the care they offered. She didn't explain what prolactinoma actually meant. It felt like she just wanted to hurry me up and keep going. I didn't feel comfortable and was always looking for a better fit.
Photo credits: Courtesy
About a week later, I spoke to a friend and told her that I was unsatisfied with my previous treatment plan. She recommended the Mayo Clinic because she had a family member who had been treated for cancer there, and he was satisfied with his experience and care. To try it, I submitted an application for patients to the Mayo Clinic in mid-August 2018. My case was reviewed at the end of the month and I participated in my first consultation.
My new medical experience was like day and night 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 in detail what was going on, and I was able to examine the imaging scan of my brain and tumor next to them.
Because my tumor was too small to be surgically removed, my doctors decided that the best treatment for me was to take a medication that would lower your body's prolactin levels and possibly prevent the tumor from growing or even shrinking.
I probably need to take this medication for the rest of my life to keep my tumor at bay. I may also need to change medication (or stop taking medication for a while) if my husband and I try to have children, although my doctor says we can discuss this in more detail when the time comes. I also visit my endocrinologist for a blood test every six months and get a routine MRI every two or two years to monitor my tumor.
Photo credits: Courtesy
Nowadays my cycle is not 100 percent normal again, but it is quite tight. Instead of constant spots and bleeding, I only have slight spots in the days before my period. My acne also faded within a few months. While my medication has some side effects like headache and drowsiness, extreme fatigue has also subsided.
As helpful as my doctors were, I was still looking for more information and other people who were going through the same struggles.
When I was diagnosed with prolactinoma for the first time, I didn't know anyone who went through this. When I started looking for resources for prolactinomas, I had a hard time finding them. This inspired me to create my own.
Today, I use my Instagram and a podcast called Fit Me Daily to connect with other women with prolactinomas and share the resources I wanted when I was first diagnosed with mine. Putting these platforms together has been therapeutic for me and I hope that other women will find them helpful in managing their own health trips.
My tip: If something doesn't seem right, it's probably not right. Trust your belly, stand up for yourself and look for treatment options that make you feel good. I'm so glad I did it.
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