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When I was 24 (2017), I noticed my a small amount of liquid coming from my nipples. I know I wasn’t pregnant, so after googling a bit, I shrugged it of as overstimulation. Because I also had irregular periods, my partner encouraged me to get it checked out just in case. I didn’t have a PCP in New York, so I booked with a new doctor who was near my office.
After an examination, the doctor said “have you googled this at all.” I thought what a strange question, but I realized she didn’t want to me be surprised by what she said next. She said “you likely have a benign tumor on your pituitary gland. Let’s run some labs and get an MRI to be sure.” My heart sank, and I felt too shocked to ask any important questions. I didn’t even feel confident about where exactly the pituitary gland was located (now I know it’s in your head but not your brain). I left the office with a paperwork for an mri, transvaginal ultrasound, bilateral breast ultrasound, and lots of bloodwork.
The test results came rolling in:
Prolactin, serum : 44 (normal range 3-18.6 pg/ML)
Breast ultrasound: “No US evidence of malignancy.”
Transvaginal: “Unremarkable ovaries”
MRI: “Unremarkable contrast-enhanced MRI examination of the brain and pituitary gland.”
My doctor was a little thrown off by my MRI coming back normal and decided to go through every endocrinological test in the book (she literally brought a book in the examination room). The next two months were endless blood tests with no conclusive results. One morning, they scheduled me before the phlebotomist came in by mistake. I got poked over 10 times in my arms, wrists, and hands while various doctors tried to draw my blood since she wasn’t in. I felt like a test rat. After more inconclusive results, I decided I was done. None of my symptoms bothered me enough to be worth the stress of more tests.
A year later, I scheduled my annual gynecologist visit. She listened closely while I told her about my health journey. She said, “I understand your frustration. I’m going to refer you to an endocrinologist. You should really be seeing an expert in this field.”
I did a lot of the same tests over again, prolactin still high, but this time my MRI showed different results. “Approximately 4 mm right-sided microadenoma.” There is was. The little tumor causing my issues. I was prescribed prolactin and scheduled a 3 month follow up. Although cabergoline is known to have intense side effects, I luckily didn’t experience any. The lactation stopped but my periods were still irregular. (I was put on birth control in 2019 to give my fertility it’s best shot in the future) For the next two years I saw my prolactin decrease quickly and my MRI results improve. The 4mm adenoma went to 2.5 mm in 2019 to 1-2mm in 2020. With this news, I was able to stop the cabergoline. After 3 months, my prolactin levels were still in normal range. Moving forward, I have to continue follow ups every 4 months and yearly MRIs.
While the testing felt like a pain in the beginning, I’m grateful my gyno didn’t let me push my health to the side. Untreated pituitary adenomas and hyperprolactinemia can cause more severe issues than a little leaking like infertility and vision loss.