My Personal Struggle after Being Misdiagnosed with PCOS

09/30/2019

By: Amy Divaraniya, PhD

 

Polycystic ovary syndrome, or more commonly, PCOS, is an incredibly common disorder that affects about 10% of women in the world which equates to 5 million women in the United States alone. That number may sound high, however, many women remain undiagnosed or misdiagnosed. September is PCOS Awareness month and to support that effort I thought I would share my own experience of how I was misdiagnosed with PCOS several times while in my 20s. Like many women, I have always had irregular periods. Sometimes I get a period every month for a couple of months and then don’t see Aunt Flow for four or five months. My periods are extremely painful and sometimes I can bleed for weeks at a time. At one point when I was 22, I was limping around my room because the cramps were so excruciating. Knowing this could not be normal, I decided to finally see my Ob/Gyn.

 

“You have signs of PCOS.”

 

This was my diagnosis after three physical observations – 1) I was reporting irregular periods, 2) I had a little bit of acne on my chin and 3) I had gained a few pounds. I didn’t question her at the time because I didn’t have an alternative explanation for my symptoms. She prescribed birth control to help regulate my periods and told me to start taking Metformin because I was apparently pre-diabetic.

I walked out of her office completely stressed out. I was pretty healthy overall and couldn’t believe I was pre-diabetic at 22 years old. That one thought made me compliant in taking my medication every day. Yet after a few weeks of taking these meds, my period never regulated. Instead, I experienced every single side effect from the medications. When I got my period, I was bleeding even more than before. To make it all worse, I gained more weight and I started having drastic mood swings - including days of extreme depression.

When I returned to my doctor she said it would take a few months for my period to get regulated but regardless, she switched my birth control pill. I still experienced crazy side effects and for the next three years, we cycled through several birth control pills. I remained on Metformin the entire time.

 

My period never got regular.

 

Frustrated, I went to a new Ob/Gyn and reported my issues with the birth control pills and irregular periods. I told her I had PCOS and she asked if I ever had my blood tested to confirm. When I said no, the disbelief in her expression was priceless. She took some blood and scheduled me for an ultrasound that day to see if I had cysts on my ovaries. The test results indicated my hormones were fine and I had no cysts on my ovaries. I just had irregular periods, but no PCOS! I learned shortly after that my doctor three years ago could have checked my hormone levels, specifically, testosterone, FSH (follicle stimulating hormone) and LH (luteinizing hormone) for a more accurate diagnosis - none of which she had done.

 

I had been taking unnecessary medications for 3 years because a doctor couldn’t be bothered to do the appropriate testing to confirm a diagnosis.

 

I don’t know what the long term impact of the medications were on my body but it was horrible in the short term. Those drugs were directly impacting my hormone levels and I didn’t respond well at all.  Eight years later, when I experienced trouble getting pregnant, there were countless times I found myself crying at night thinking this was all because of the unnecessary number of medications I took.

I know that I am not alone in my story. We can accept that PCOS is a complicated disease. We can also accept that there is no single diagnostic test to confirm PCOS and we may accept that medical professionals can’t agree on the best ways to confirm a PCOS diagnosis. What we should not accept is a woman having to be solely dependent on what her doctor tells her because she has no way of knowing what is happening in her body without her doctor’s help.

 

It’s the 21st century!

 

Women should be able to take control of their health. We should be armed with information about our body and be able to take that to a doctor to help in proper diagnosis for any disease. OOVA is taking the first step to make this a reality. PCOS, like many other reproductive health disorders is driven by hormone levels. OOVA accurately measures a woman’s daily hormone levels and provides her with ample information about how her hormones behave over time. This can be critical information to help in accurate diagnosis of many reproductive health issues including PCOS. I truly hope that OOVA can help alleviate any of the stress and unnecessary pain you may be experiencing in your fertility journey. Know that you are not alone and there are many facing similar challenges to you. Together, we can actually make a difference and change women’s healthcare.