My mother knew something was wrong when I started missing menstrual cycles. I was 15, sexually active (she didn’t know this) and I would go six, seven, even nine months without a period. After I had a stroke at age 17, my hormones were weirdly out of place and I became more irregular. Both times, I was overlooked, and told I was stressed or ‘I must be on birth control’ (I wasn’t). Then all the other symptoms appeared.

I’ve always been overweight. That’s what happens when your Puerto Rican parents cook rice and beans, and some type of meat EVERY DAY. And if you didn’t want it, you didn’t eat. So when I got to college, I thought I’d see a difference in my weight because the food was different and I would work out more. But it didn’t change, and even more frustrating was that the hair on my face became darker and more noticeable. So I went to the doctor.

Not to throw anyone under the bus but...Westchester Medical Center refused to due hormonal testing, a PAP (later I learned this would have done nothing for PCOS), or ultrasound because I was 19. I was a woman of color, under 21, with a medical condition that no physician would diagnose. So every week, I went to the salon, got my chin and neck waxed, then I did laser, wasted $4K, and was back to square one. Nothing helped. I dealt with horrendous periods, unable to get out of bed most days, excessive facial hair, and climbing weight. After I graduated and moved into the city, I sought help from other physicians and it only took from 2014 to 2017 to find a doctor willing to listen.

I started seeing an endocrinologist in 2016, but he brushed it off, prescribed me Metformin, and left the practice. The medication made me so sick, I stopped taking it. In 2017, I found Dr. R* at NYU Langone and she too prescribed Metformin but along with various blood work and ultrasounds. The medication made me sick, so I stopped taking it. The blood work came back with elevated testosterone and other diagnosing factors, giving me the official diagnosis of Polycystic Ovarian Syndrome.

About a year after my initial visit to NYU, my doctor left the practice. Do you know how hard it is to find a doctor that specializes in PCOS?

VERY.

Thankfully the team at her office was extremely helpful (and still are) and referred me to another doctor that specializes in PCOS – Dr. A*.

Let me tell you – Dr. A. is a godsend. She looked at me and immediately knew we needed a treatment plan. Unfortunately, this would lead to the third time I had to take Metformin, but this time the extended-release. She started me slowly, 250mg, 500mg, 1000mg, and now I can tolerate 2000mg.

Now, Dr. R. had recommended medication for my testosterone levels and excessive hair growth but it required birth control, which I couldn’t take because of my stroke and seizure history. So now, Dr. A. recommended a copper IUD (which I kind of regret because…we’ll get to that), so that I could take the new medication, Spirnoladactone. I had the IUD put in last Christmas (it was a painful holiday, let me tell you), and I started the medication the following month after my visit with her.

Over the months, my husband says he noticed a difference in hair growth. I didn’t. The side effects were too heavy for me (catch my drift?), and we were leaving for our honeymoon. My testosterone levels shot up, I was bleeding for weeks, and I stopped the medication. Ask me if I’ve stopped bleeding...It’s been almost six months.

Nevertheless, I recently had an appointment with Dr. A. and we’ve added a new medication to the mix to help with my weight. She also wants to start the Spirnoladactone again. I don’t, but I’m willing to give it ONE more try. I spoke to my new OB, and he’s on board with her. I guess it’s two against one, huh?

The reason behind this long entry is because I wanted to give you, fellow Cysters, and those interested in what PCOS is, what it does, etc…is to share my story. It took me from the age of 15 to the age of 25 to get a diagnosis because ‘I was stressed,’ or ‘I was exaggerating.’

As of September 18th, I have over 50 cysts on my ovaries, which is probably why I don’t ovulate, and at this moment, there’s nothing they can do. In a few months, hopefully, they will have decreased in size. But until then, I am following a strict diet and treatment plan. I have also been bleeding for nearly six months, having a period pretty regularly up until July/August. Let me tell you, this spotting is no joke. PCOS is a bitch.

Note: Women of color, whether you are Black, Latina, Native American, Indian, etc…SPEAK UP. My doctors at NYU are diverse, but my endocrinologist Dr. A. and my previous, Dr. R., are both women of color and I’ve never been so happy with my treatment plan or experience in their offices. Find a doctor that understands you and that will listen.