It’s not everyday your doctor tells you that your body has failed you.
Lena Dunham wrote a piece, “The Sickest Girl,” in her creation, Lenny Letter, two weeks ago about her experience with endometriosis, a reproductive disorder where tissue grows outside the uterus.
While I don’t necessarily agree with every issue Dunham writes about, I felt reassured to know there were women out there who felt like their body had betrayed them as I had.
Last year on Nov. 25, I was diagnosed with Polycystic Ovary Syndrome, an endocrine disorder that affects hormones and the reproductive system. Although I don’t suffer from endometriosis, I like to think of it and PCOS as painful sister disorders of the uterus.
It’s estimated that 1 in 10 to 15 women have PCOS and about 1 in 10 women have endometriosis. A majority of these women will be misdiagnosed or written off as simply exaggerating.
I remember walking into my OB-GYN for my appointment. It was my first time seeing her. I had been seeing another gynecologist at the same office who I didn’t think was taking my complaints about menstrual pain seriously.
Sitting in nothing but a paper outfit, I recounted how my cramps were so bad during my last period, I toppled over in the shower and had to crawl back into my bed, unable to stand or uncurl my abdomen.
It was the hallmark symptom of irregular periods beyond adolescence that caused her to diagnosis me with PCOS.
She explained that PCOS was like “a bucket of symptoms.” Meaning that I could have only two or three symptoms, like weight issues or acne, in order to be lumped into the PCOS crowd. There isn’t much research on what causes it and there’s no cure, only treatment through birth control, drugs and lifestyle changes.
“No dairy, no bread, no sugar, no starches,” she said. I had to start losing weight immediately to combat the symptoms.
She threw around words like “prone” and “higher risk” next to “diabetes” and “cancer.”
“Infertility” was the word that really rang in my ears. I’ve stated before in my personal life that I have no desire to have children and I’ve even written a column about it.
But it’s one thing to make a decision on your own and a whole other feeling to learn at age 19 that a part of your life could very well be predetermined by a matter you can’t control.
When I left the office, I was stunned. I sat in my car for five minutes before leaving. I felt confused about the encounter I just had. I was worried I hadn’t remembered everything she told me. I was pissed because some woman I’d never met before told me I had to go on a diet two days before Thanksgiving. But most of all, I was terrified.
A month later, I returned to the office 17 pounds lighter and even more anxious — I was due for blood work. But the tests came back perfectly normal, my hormones regulated to a T. My doctor never gave me an explanation.
Over the year, I went through a cycle of anxiously worrying about the disorder, questioning my doctor’s diagnosis and then not giving a shit, all while enduring pain and misery.
But it was developing doubt that convinced me to do what I should have done in the beginning: get a second opinion. I caved this Thanksgiving break and scheduled an appointment with another OB-GYN in January.
I’m tired of searching Google for explanations of my symptoms and questioning my diagnosis. I’m done with taking tests, getting normal results and getting shrugs from doctors. I’m over physicians prescribing me different birth control methods every couple of months and a handful of painkillers. And I’m sick of being sick.
Natalie Rowthorn wrote a column Tuesday about how important it is for young women to have routine checkups with their OB-GYN and stay conscious of one’s reproductive health.
I want to echo this suggestion, but add that if you feel your cramps aren’t normal or you think there’s something wrong, say something.
You know your body better than anyone else; don’t downplay your pain and discomfort because everyone tells you “it’s normal.” And it’s also perfectly okay to question your doctor and seek out other answers.
Don’t repeat my mistakes of avoiding doctors and then believing every word they say. Come prepared to your appointments with research and questions. Talk to those around you about your fears and concerns.
And don’t worry, you’re not crazy, you’re just in a lot of pain.
maehogan@indiana.edu
@madisonhogan
