It took two years to find a doctor to believe me that I had Polycystic Ovary Syndrome (PCOS), and some of that is my fault. Learn from my mistakes.
I knew something was off with my body:
I was losing hair.
I was gaining weight but had close to no appetite.
I was EXHAUSTED. I’m talking about the same tiredness I experienced when my girls were newborns and up nursing every two hours. That tired. All. The. Time.
My cycle was all sorts of unpredictable when I once could have told anyone (if they wanted that information) within 12 hours when my period would start.
I was too miserable, too ‘off’ to be experiencing anything normal.
At the onset of my concerning symptoms, I contacted my physician in Michigan to get labs drawn to see if anything was alarming there. I have a history of iron deficiency, and when my labs confirmed that diagnosis, I adjusted my supplement regimen and went on my way.
But when my symptoms remained six months later, I found a local primary care doctor. See, I was relatively new to Florida, and I did not have a medical team in place. And this is where I made my first mistake — I made an appointment with a doctor who had decent online reviews. I trusted a few strangers who had enough of a positive experience with him to write a nice review about his professionalism, care, and knowledge online. At our first appointment, he dismissed my symptoms and concerns. I went back once to review labs but was wildly underwhelmed with his lack of thoughtful assessment of that new information and my symptoms.
After this appointment, I made my second big mistake.
I believed him.
I believed that everything I was experiencing was “normal” and that I was exaggerating how much my daily life was being impacted.
And because I believed him, I stayed quiet and tried to manage my symptoms myself. I thought that my medical training would be enough. I became overly aware of everything I was eating each moment I was exercising and tracked every symptom I experienced during my cycle in hopes that I could spot the pattern that was leading to my now unpredictable period.
It took a stern talk from my best friend, who is a nurse, to realize I was in over my head. It had been almost a year since my failed attempt at finding a new primary care doctor, and I was just as miserable as I was the year before. I had not solved any of my issues myself.
So, I took a recommendation from a neighbor and made an appointment with a new primary care doctor. This doctor listened to my long-winded story about the last 18 months and asked thoughtful questions about my medical background. I cried in the middle of that appointment because I knew she was listening to me, and I realized what a disservice I had done myself by remaining quiet for so long.
My new doctor ordered more labs than I had ever drawn at once, and when the results came back, I was referred to an OB/GYN. I went to a specialty OB/GYN who came highly recommended by my primary care doctor to talk over the labs, and after an ultrasound of my uterus, my diagnosis became clear.
I have PCOS — more specifically, Phenotype B PCOS, also called non-PCO PCOS. My ovaries do not have the traditional cysts but abnormal hormone levels, and my symptoms align with this variant of PCOS. In fact, my condition has created conversations in the medical field to change the name because women like me have the same symptoms as women with the other phenotypes of PCOS without the cysts that the name alludes to.
Thankfully, I have a treatment plan in place and am feeling better.
The specifics of my treatment and care are not relevant to this piece — but the message is:
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You are your best advocate for your body. You are right if you think something is wrong or off in your body. NEVER dismiss your intuition about yourself; seek additional help or opinions if you are not being heard.
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Never settle for a care provider dismissing or downplaying your symptoms. Your concerns about your body are valid and deserve to be investigated until YOU are satisfied with the results and treatment plan.
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Just because someone has the qualifications to be a doctor does not make them the right fit to be your doctor. Finding a doctor does not have to be a one-and-done — just because you chose a specific doctor at one point does not mean you have to remain in their care. If they do not meet your needs, you can move on.
September is PCOS awareness month, so if you think you are experiencing any of the symptoms of PCOS, I urge you to seek a medical professional’s opinion!
