Voices of PCOS: My Story

September is PCOS Awareness Month here in the States.

September is PCOS Awareness Month

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:

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Comments

  1. says

    ‘If I had only known’ is exactly what I beat myself up about when I’m at my lowest. My initial PCOS diagnosis ran very closely to yours, just an ultrasound and ‘take your BCP.’ Then ‘I’ll write it down so you can google it.’ I can’t imagine how hard your struggle must be at times, when I know how bad it was to be dismissed at 28. It sucks.

    I look forward to reading this series.

  2. says

    This is wonderful advice. I don’t have PCOS myself, but I do have a daughter. Expecting a teenager to have the answers for herself is asking a lot. But knowing these symptoms as a mom could help my daughter.

    • says

      Definitely! Even if I don’t have a biological child, it’s because of the research I did after my diagnosis that I know my stepdaughter is at higher risk for PCOS from my husband’s medical history.

  3. says

    What a fabulous list of guest posters.

    Keiko, I can’t imagine going through infertility and having that nagging “What if” question hovering over your head. I hope this series helps someone.

  4. says

    grrr same thing that happened to me when they diagnosed me with endo at the ripe old age of 13. Just told me I had it didn’t really explain what it was and told me to take birth control. Didn’t tell me that the pill has side effects or that after taking it for 10 years my body would start to be immune so to say to the hormones. I am not sure if they did not want to freak me out or what but I feel like all that time I could have been going to fertility specialists or something, now I am so freaked out by what they might tell me I am just waiting until I actively try to have children.

  5. Liat says

    Interesting. I think this is important information to disseminate. It could make a difference for many of us with infertility and/or endo/PCOS. Thanks for sharing a private part of you.

  6. Amanda G. says

    Keiko,

    As always, you are amazing. With my diagnosis of PCOS only about 3 months old, reading the Voices of PCOS this week makes me both hopeful and angry. My doctor did the same thing so many talk about when “diagnosing” me. When I mentioned to him that I was concerned that I might have PCOS or some other hormonal imbalance, his reply? “Oh yeah, it definitely sounds like it. We can talk birth control, or you can just let me know if you notice any other changes and we can talk again.” Thankfully, I have friends like you, who have been vocal about their battles with PCOS and infertility to know a little bit better and I sought out a new doctor.

    I’m angry because it sucks. On a stupid insignificant level, I’m angry because I can’t eat pasta and rice and sugar without worrying about my overall health and ability to conceive my future hypothetical children. I’m angry because PCOS has caused me to gain weight (and hard to lose it) and I can’t wear the cute clothes that I want to, not to mention causing pre-diabetes and insulin resistance at 27. I’m more than a couple years behind you in my journey in TTC, but I’m angry that when I am ready for children I likely won’t be one of those women who thinks about getting pregnant and it happens. It’s still easier to get angry about the insignificant stuff, than the serious medical implications.

    But, your posts and this series gives me hope, because it reminds me I’m not alone. That so many other women have been diagnosed with PCOS, and are living with it, and are (or were) angry about it just like me.

    Thank you, and thank you to the cysters who are contributing this week. <3

  7. says

    Thanks for this series. I’m really enjoying it. I suspect that I have PCOS though it has never been formally diagnosed due to my other issues: endo, unicornuate uterus, etc. I’ve found that I respond well to lower carb diets, which makes me suspicious about my insulin. Thanks for all you do!

  8. says

    Thank you so much for all of your efforts to highlight PCOS! I just read through all of the stories, including your own, and I can’t say enough about how important it is to educate the world on PCOS. I, too, had the all familiar “you don’t ovulate” diagnosis at 19 (she never even told me the name of it!) and was put on BCPs for 10+ years! I had no idea what it all meant – even when I went to my PCP because I gained a lot of weight quickly I was tested for my thyroid and that’s about it. I was told it was likely “marriage weight” and to work out more. It took a year of negative ovulation tests for me to finally demand a referral to an RE who properly did all the tests and formally diagnosed my PCOS.