From a Tiara to a Tumor: Miss Nevada’s Struggle with a Pituitary Adenoma

From our friend Christina Bourne O’Neil –

I was diagnosed with a prolactinoma in 2005. Prior to my diagnosis and before my symptoms began I had very few health problems. When my symptoms initially began, I assumed they were typical problems that every young woman experienced. I had headaches, fatigue and irregular menses. However, when I began having severe heart palpitations I knew I needed to see a doctor. I was referred to a cardiologist and was put on a beta-blocker to stop the palpitations.

In 2003 I was crowned Miss Nevada and had the honor of competing for the title of Miss America 2004. During my year as Miss Nevada, my symptoms became worse. I began having trouble maintaining my body temperature, my periods became irregular and unpredictable, and I was becoming more and more fatigued. I was told that it was likely because of the stress that I was under. I was prescribed a higher dosage of birth control to regulate my menses and did my best to reduce stress.

In 2005, I suddenly began to gain weight and lactate from one breast. I called my doctor and was instructed to take a pregnancy test. I took the test first thing the next morning, and much to my surprise it was false. The doctor told me to wait a couple of weeks and try again. Then the time came to take the next test and it too was negative.

My doctor ordered tests to check my prolactin levels. The results were that my prolactin was elevated, and she then ordered an MRI which showed a 6mm tumor on my pituitary gland.

I was started on Dostinex and told that this medication would fix the tumor and as soon as I wanted to get pregnant to go ahead and go off of my birth control pills. Not long after, I went off of the pill and much to my surprise my periods became almost non-existent immediately. I was not having any luck getting pregnant, and I was getting sicker by the day. I was suffering from rapid weight gain, vertigo, diarrhea, fatigue, and many more symptoms.

After nearly two years of seeing one doctor after another and my tumor not responding to the medication, I was referred to Stanford. Once at Stanford, I was reassured that my symptoms were not uncommon and that I was a perfect candidate for surgery. February 22, 2007 I underwent brain surgery for the removal of my tumor.I felt better very quickly and spent the next six and a half years enjoying my tumor free life!

Sadly, last year my symptoms began to reappear and my prolactin levels began to rise. I once again began taking Dostinex to control the prolactin levels, and I am happy to report this time the medication is controlling the prolactin. I am however having new symptoms, and I am currently undergoing more testing to pinpoint the cause of the new symptoms. Despite my struggles with pituitary disease, I am grateful for my incredible team of doctors who continue to work with me in an effort to regain my health.

I invite you to join me in raising awareness of pituitary disease by speaking openly about it and sharing your story.

Helen Keller once said, “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.” We may feel alone, but we are not. Together we can make a difference!

 

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