Voices of PCOS: My Story

September is PCOS Awareness Month here in the States.

PCOS (polycystic ovarian syndrome) is estimated to affect as many as 5 to 7 million women of childbearing age in the United States alone. The most common symptoms include irregular periods and the development of fluid-filled cysts on a woman’s ovaries. It’s a tricky little disease, affecting fertility, weight, metabolism, skin, mood, and more. Women with PCOS face a greater risk for both Type II Diabetes and cardiovascular disease.

PCOS is one of the most common endocrine system disorders in the country and is often the most mis- or undiagnosed hormonal disorder.

PCOS is indeed a very public women’s health crisis.

Some of the biggest barrier issues to treatment is the misdiagnosis of its myriad symptoms. When many young women are finally diagnosed, they often haven’t even heard of PCOS and may not realize at first just how broad a spectrum of impact PCOS has on their health.

And that’s why I want to highlight some of the voices of PCOS: the more we talk about it, the greater the chances for early education and prevention. The earlier PCOS is detected, the better the chances for more comprehensive and accurate long-term care.

So for this week, I’m turning the mic over to four bloggers who have lived with PCOS. Each of their experiences with PCOS are very different and it’s vital to share their stories as just a representative slice of what it’s like to live with PCOS.

I’m very excited to introduce this week’s Voices of PCOS guest posters:

• On Tuesday, Kristin from Once A Mother will talk about growing up with PCOS as a teenager and how she must live her life now as an adult woman with PCOS.
• On Wednesday, Mandie from To Love a Rose will share with us her “trip down the natural path” after years of Western Medicine failed to produce any results. She’ll also share with us the ways in which she’s been very personally affected by some of the more serious health implications of PCOS.
• On Thursday, Melissa from With Every Heartbeat reveals what it means to be a “skinny cyster” and how PCOS is not a “one size fits all” syndrome.
• And finally on Friday, Kymberli from The Smartness will round out the week with her very unique experience of living with PCOS.
• You can read all of the posts here.

To kick things off, I wanted to share my own brief story of PCOS.

Before I was ever diagnosed with POF/POI, I was always operating under the assumption that I was living with PCOS. When I was 18, just before I left for college, I got very sick, very suddenly one weekend. I had a headache, backache AND stomachache, all at once. I threw up a few times and finally my mom hauled me off to the doctor. After a little poking and prodding, he sent me to my mom’s gynecologist who ordered an ultrasound.

During some point of the shell game shuffle between doctors’ offices, I felt a horrible stabbing, white-hot pain in my abdomen. By the time I was on the ultrasound table, they couldn’t see my right ovary – the whole area was filled with fluid. They took a look at Ol’ Lefty and saw that she was covered in small, fluid-filled sacs. And just like that, I was diagnosed with PCOS. They gave me a prescription for the birth control pill and…

That was it.

I never had anymore follow up beyond that. No conversation about the lifelong health impacts. No conversation about fertility issues. Just “take the pill and it’ll keep your cysts at bay.”

…Which then turned out to be fairly bunk advice because I was in the hospital three months later with a cyst so large it torqued around my ovary and it was was Bye Bye Lefty. Even after I lost my ovary, there was never any follow-up conversation about PCOS.

The party line was simply, “Keep taking the birth control and you’ll be fine.”

So I did.

And here I am at 29 now, with POF/POI.

. . .

I leave that hanging there deliberately, because part of me wonders if I had been more vigilant, more in touch with my body, perhaps I wouldn’t be here with POF and maybe in the early stages of POI instead.

If I had known to advocate for myself in the doctor’s office… maybe I’d still be living with PCOS. And not that it’s no walk in the park either, let me be clear – but maybe I wouldn’t be walking around in Game Over fertility territory and perhaps I could be in We Still Have a Chance.

That’s why I want to share with everyone this week these voices of PCOS. I wish I had known about stories’ like Kristin, Mandie, Melissa, and Kymberli. I wish I had been a better advocate for myself. When PCOS affects this many millions of women – and it’s still catching so many of them by surprise – we need to lift some of the mystery about living with this disease so that young women can advocate for themselves in their doctors’ offices.

So for this PCOS Awareness Month, I’m stepping up my game to bring you these four Voices of PCOS.

I hope you’ll come back each day this week to read each of their fascinating stories of living with PCOS and help spread the word about PCOS all throughout the month of September!

For more facts about PCOS, check out these resources below:

• PCOS: An Overview, from RESOLVE
• Polycystic Ovarian Syndrome Fact Sheet, from the Dept. of Human Health & Services
• SoulCysters, an online education and support forum for women living with PCOS