Hi, my name is Serena and my life is a hot mess.
I was diagnosed with idiopathic pulmonary arterial hypertension (PH) about 3½ years ago. I had never heard of this apparently rare disease until I was told I had five years to live, 10 if I was “lucky.” (Whether I truly believe this prediction is still up for debate. Did I mention I am really stubborn?)
This started my new-found career as a chronically ill patient. It also was at this time that my doctors, all males, started to take my concerns about my health more seriously.
I had complained that I was having trouble breathing for months (a key sign of a heart-lung disease), but the doctors in the ER insisted it must be stress and that I was healthy. By the time I was diagnosed with PH I was in right-sided heart failure, and between a Stage 3 and 4. So, when I complained about pelvic pain two years later, I was booked for a pelvic ultrasound right away. My doctors were finally taking my intuitions about my health seriously.
After my pelvic ultrasound, my doctor called my house and informed me that I needed to come in and see him. I became immediately nauseated because I’ve learned throughout the past few years that doctors rarely want to see you to discuss good news. It was pretty hard to stay zen for the week leading up to my follow-up appointment. My overanxious mind started worrying about worst-case scenarios, where they finally drive me to the glue factory. I eventually talked myself off of the ledge. I have had horrible menstrual periods all of my life, and I was finally going to get an explanation as to why.
At my follow-up appointment with my family doctor to discuss the results of my pelvic ultrasound, he explained I have three issues, which individually could be managed. But because I have three abnormalities mixed together, my reproductive organs are basically a disaster. Plus, I have PH, which makes it difficult for me to seek treatment options (like taking birth control or having surgery.)
My doctor pulled a grayscale image of my uterus to his computer screen. I studied the ultrasound of my uterus and knew it didn’t look right. It didn’t look like those crisp, clean charts in health class from many years ago. It looked more like Picasso’s Guernica. Although it is one of my favorite paintings from art history, it isn’t something you want your uterus to look like. (If arrangements can be made, the Birth of Venus seems like a pretty serene image to model your uterus after.)
It showed one ovary wandered off to be completely in the wrong spot – plus, it has a fairly large cyst. The other ovary has at least three cysts. It also was confirmed that I have endometriosis, something that I have shown symptoms of since age 11. Because I had only a pelvic ultrasound, it has been confirmed only that I have endometriosis in a fallopian tube and on the outside of my uterus.
I have been complaining about painful periods most of my life, but I have had only male doctors. They couldn’t understand that I knew the pain I was experiencing was different. I knew it was wrong, but they believed that periods were supposed to be uncomfortable, and that the pain I experience is normal.
It was hard to convince my male doctors that leaving school and work while vomiting or blacking out from pain was not your run-of-the-mill PMS symptom. It became clearer as I got older that my period wasn’t like my friends’, either. The cramps I have been experiencing most of my life are debilitating, and unfortunately, they’ve continued to get worse since my PH diagnosis.
I mentioned earlier that the doctor told me I had three abnormalities with my reproductive organs: My wayward ovary and the endometriosis scatted throughout make two. So, what was the third thing I found out?
I squinted at the computer screen. My uterus has a septum; it has a wall going all the way down the middle of it. “Maybe it is less of a Picasso, and more of a drunk Mr. Potato Head,” I thought to myself.
Like I said, it’s kind of a hot mess.
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