My Fertility Struggle After Being Misdiagnosed with PCOS

By Amy Divaraniya, Co-Founder and CEO, OOVA

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 being 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 also 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.

3) I had gained a few pounds.

I didn’t question my doctor at the time because I didn’t have an alternative explanation for my symptoms. She prescribed me 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 overwhelmed and 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 become regulated and she switched my birth control pill. I still experienced crazy side effects, and over the next three years, I cycled through several different birth control pills. I remained on Metformin the entire time, and my period never became 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 any cysts on my ovaries. The test results indicated that my hormone levels were fine and I had no cysts on my ovaries. I just had irregular periods, but no PCOS! I learned shortly after that my original doctor 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.

The bottom line is that I had been taking unnecessary medications for 3 years because a doctor couldn’t be bothered to do the appropriate testing to confirm a PCOS diagnosis. I don’t know what the long term impact of those medications were on my body, but the side effects were horrible in the short term. 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 in my 20s.

I know that I am not alone in my story. PCOS is a complicated disease, and I accept that there is no single test to confirm a diagnosis. I also accept that medical professionals can’t agree on the best ways to confirm PCOS in patients. But what I cannot accept, and we should not have to 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 is the 21st century, and women should be able to take control of their own health. We should be armed with information about our body that comes from actual diagnostic tests and be able to take that information to a doctor to help confirm a proper diagnosis for any disease or disorder.

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 get an 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 who are facing similar challenges to you. Together, we can actually make a difference and change women’s healthcare for the better.

Links:
https://www.nichd.nih.gov/health/topics/pcos/conditioninfo/diagnose
https://www.healthline.com/health/polycystic-ovary-disease#diagnosis
https://www.mayoclinic.org/diseases-conditions/pcos/diagnosis-treatment/drc-20353443

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Aparna (Amy) Divaraniya is the co-founder and CEO of OOVA, a fertility diagnostic company that brings the accuracy of a clinic into a woman’s home. After personally having trouble getting pregnant, Amy experienced first-hand the limited number of options available to women who were trying to conceive. This created a deep-rooted passion in Amy to change women’s healthcare for the better. Amy’s primary goal with OOVA is to provide women with accurate information about their body and to empower them to take control of their health. Prior to founding OOVA, Amy earned her PhD in Biomedical Sciences from Mount Sinai Hospital. She has more than a decade of experience as a bioinformatics scientist in both academia and industry and has led projects in the areas of molecular network analysis, personal genomics, and biomarker discovery. You can find OOVA on Instagram here and Facebook here.

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