Before I was diagnosed with adenomyosis I was almost certain that I had polycystic ovary syndrome or #PCOS. I came to this conclusion through a series of frantic Google searches and loosely connected dots ranging from my previous medical history and symptoms I was experiencing, and still experience today, like painful cystic acne. I never had acne. Maybe an occasional zit here and there in high school but overall I’ve always had clear skin. These swollen and red flare ups congregate along my jawline and are deep under my skin. I tried all sorts of different products to remedy my skin issues — scrubs, salicylic acid products like wipes and pads, masks, cleansers, you name it. Because I thought it was just that for the longest time — a skin issue and a skin issue only. My skin isn’t oily or dirty. I’m not breaking out because of a poor diet. I drink so much water. I do all of the things beauty bloggers swear by for clear, beautiful skin. I was searching for an answer so of course I did what anyone would do. I turned to Google and typed in painful acne. This led to cystic acne, which pointed me in the direction of PCOS.
In addition to the random acne, I couldn’t explain why my periods were so painful and irregular. Something must be wrong, I thought. It must be PCOS then. That’s it! Truthfully, things have never really felt all that right. Even in college I remember having a lot of questions about my fertility, reproductive health, and lady parts. (If you're wondering what a healthy period is like, read this.) Unfortunately, my questions went unanswered despite my visits to the campus health services building. My symptoms were shrugged off as normal over and over again. Birth control was prescribed. My abnormal pap and hysteroscopy test results were met with statements like “A lot of women your age have abnormal results. Come back next year for another assessment.” And, “You have HPV, but don’t worry about it. It’s normal.”
Which is a surprisingly similar story shared by many women. I recently learned that women see an average of eight different doctors for 10 years before getting an #Endometriosis diagnosis (Endo is the "sister disease" of Adenomyosis).
It wasn’t until last year until I finally found a doctor that gave me some answers. My impression of her was that she was determined to get to the bottom of what was causing my symptoms. She went through a series of different tests and assessments. Still not satisfied with her conclusions, she ordered a vaginal ultrasound. After the paps, blood tests, ultrasound, etc. she explained that I have #Adenomyosis. She explained the disease. And I could sort of breathe a sigh of relief. It wasn’t cancer. And it wasn’t PCOS. But it was an answer and an explanation to why my periods were so painful.
However, she told me that she wanted to order additional blood tests. Why? She told me that she suspected a #braintumor. The acne and irregular periods are symptoms of what's called a pituitary adenoma. I don’t even know what my expression must have looked like sitting in her office when she said those words. Looking back I remember being extremely calm and cool-headed about on the outside. So I did a blood test. My results came back with elevated levels of prolactin. So, she wanted to test me again. Still, the results returned elevated levels of prolactin. Next, she suggested an MRI.
I have always disliked visits to the doctor's office. I have always felt like going to the doctor results in learning something is wrong with you and then you become a sick person. I didn’t want to be a sick person. Ignorance is bliss, and honestly, I’d rather not know. That was my thinking then. This entire process was extremely draining, stressful, and really tough for me all around. But, I trusted my doctor. So I got the damn MRI. Her suspicions were true. My MRI showed that I had a small tumor called a #prolactinoma.
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