The official definition of PCOS is this –
PCOS (Polycystic Ovarian Syndrome) is a complex metabolic and endocrine condition that causes hormonal imbalances in women and girls of reproductive age. PCOS affects 5-10% of women of reproductive age – hormonal imbalances prevent the ovaries from ovulating and releasing an egg to meet the sperm, thereby resulting in impaired or sub-fertility. Even small adjustments in lifestyle choices make a big difference in how PCOS can affect you.
It’s a syndrome that affects all women, including those as young as 11 or 12. Young women and girls should not wait to get help until they are trying to conceive to address PCOS as so many symptoms and side effects of this syndrome can be challenging both emotionally and physically.
Want to join a community of young women managing their PCOS?
PCOS does not discriminate. It affects women of all ethnicities and is widely considered to be the most common endocrine disorder found in women, affecting many areas of health, including being a leading cause of infertility.
As one of the top leading, lifelong health problems that women face, it’s severely underfunded in all branches of the National Health Institute, including the National Institute of Child Health and Human Development. Because of that, there is far too little research, with heartbreakingly slow advancement in understanding and treatment of the syndrome.
Even with so many major events and venues closing due to the coronavirus, including, as of March 13, no visitors allowed in the House or Senate office buildings, PCOS Challenge pulled off meetings with federal legislators to deliver several key messages:
Putting a face on a syndrome that can read like a recitation of clinical symptoms can convince legislators that PCOS is important enough to hold an important place on their agenda.
Do our legislators recognize themselves in what they are seeing and hearing? Do they hear their sisters or daughters in the narratives that are shared in their offices? Taking the political and making it personal is an extremely effective way to elicit a legislator’s attention.
My own personal experience when speaking to legislators about individual and compelling stories is that they lean forward, they give eye contact, they listen. They ask questions and they follow up. This is how real change is made – when the personal becomes large scale and then becomes individual again.
That’s why we come together as a group and then share our specific histories.
They can’t support programs, research or legislation without knowing that PCOS exists, what it is, or how it affects women. Having clear and relevant information that is research-based (you know, the cold-hard-facts) is crucial in gaining increased PCOS support through funding, even more research, and awareness.
A PCOS narrative that is heard over and over again, with details varying depending on the woman sharing, is that she wasn’t diagnosed for a long time. Sometimes for ten years or more. Undiagnosed. Misdiagnosed. Not treated correctly because very often the physician she is seeking care from isn’t familiar enough about the varying ways PCOS can present itself to offer the best medical attention.
I bet many of you out there can relate!
Given the various health problems that are associated with PCOS including infertility, early-onset diabetes, high blood pressure, unhealthy cholesterol levels, insulin resistance, obesity, mood disorders, and heart disease, and the fact that 1 in approximately 6-8 women are affected, more needs to be done.
PCOS Challenge: The National Polycystic Ovary Syndrome Association is a 501 (c)(3). They are the organizers and champions of PCOS Advocacy Day in Washington. If you can visualize a woman, bravely going into battle, with a sword drawn, you have a pretty clear picture of Sasha Ottey. She is, along with her husband, William Patterson, and their volunteers, a prime reason that the conversation about PCOS awareness has been elevated to a national and federal level.
They organize everything about the day, like setting up meetings with legislators, coordinating and enlisting advocates to come to speak to legislators, training people to become advocates for PCOS, and so much more. They identify legislators to sponsor bills and introduce them in Congress and the Senate. Sasha and William run the largest support organization for PCOS and offer forums, groups, blogs, videos, recipes and more. As a not for profit, much of what they offer is free of charge. Amazing work.
Of course, they don’t do it alone. They are buoyed up by a group of individuals that are PCOS champions in their own right. This year, advocates from all over the country faced the challenge of the coronavirus and many of them showed up in Washington to speak, in person, with their legislators.
RMA of Connecticut is honored this year to support PCOS Challenge with a Silver level sponsorship, funding the work they do year-round so that it continues to be free or low cost to women needing it.
Want to see an entire list of PCOS warriors fighting for PCOS rights, research, and awareness? Jump to it here.
Start with your health care provider. Find out what they know about PCOS. It is possible and even likely, that you may know more about PCOS then they do. If so, an endocrinologist is a good place to start exploring your options about PCOS treatment. If you are trying to conceive, however, then a board-certified Reproductive Endocrinologist (REI) is the right specialist for you.
With PCOS, infrequent periods or amenorrhea (little or no menstruation at all) is a common complaint. While the guidelines in seeing an infertility doctor (REI) is trying on your own for six months over the age of 35 and one year under the age of 35, if your periods are irregular (more than 36 days apart) or you are not menstruating at all, that is a sign to see a REI sooner.
PCOS Advocate Diana D’Amelio, PA was interviewed by Renetta Dubose at PCOS Advocacy Day 2019. She shared her decades of experience with PCOS, explaining the understanding that there is a genetic link but recognizing that more information is needed to understand how it actually is conveyed. (See our post about it here!)
One woman, who inadvertently became a PCOS expert because of her personal journey, shared her story with us. Nia was diagnosed at 17 and had many of the most common PCOS symptoms.
PCOS doesn’t have one look or one set of predictable symptoms. Lean PCOS is a type of PCOS that is often overlooked because it doesn’t have some characteristics of some PCOS women. Monica Moore, (Advanced Nurse Practitioner with RMA of Connecticut) explains in a most relatable way, what lean PCOS is and shares her personal journey.
Awareness and expertise often come from places we least expect it. Thank you to all the celebrities out there who are openly talking about PCOS. The conversation has been elevated because of them.
One more PCOS expert who has dedicated her life to PCOS education, support, and advocacy is Ashley Levinson. She is responsible for collecting over 36,000 signatures online. Please sign. Please share.
Finally, there are a very few practices that are devoted to PCOS patients, from teenagers to those trying to conceive. RMA of Connecticut has a team dedicated to PCOS, including an REI, Physician Assistant (PA Diana D’Amelio), nutritionist, and mental health professional.
Your voice matters to your legislators. You elect them. They want to know what you care about and we hope, after reading this piece, that you care about PCOS!
Here’s an easy way to find your legislators. (Many of us don’t know who they are!)
You have one representative and can find them here.
You have two senators and can find them here.
A letter can be as simple as this:
Dear Legislator, (insert your legislators name)
My name is (insert your first and last name). I am a constituent of yours. I live (insert your address).
I would like to call your attention to a health problem that affects 1 in 6 women. In fact, you probably know someone who has Polycystic Ovary Syndrome (PCOS), even if you don’t know it. PCOS is the most common endocrine disorder that women face, and it affects many different systems in the body, causing infertility, early onset diabetes, high blood pressure, unhealthy cholesterol levels, insulin resistance, obesity, mood disorders and heart disease, and more.
I am writing asking you to support PCOS Awareness Month, which happens every September. Teal is the color of PCOS and I’d like to see you use that color in September to raise awareness for this widespread syndrome.
I’d also like to ask you to make PCOS research a priority and will be letting you know the specifics later this year on how to do that.
Sincerely,
(Sign your name)
(Print your name)(Insert your address)
(Insert your phone number/email)
If you are available to help spread the word about PCOS, please contact us. We will find something, small or big, that you can do to help.
Together, we can find better treatments and underlying issues. We can discover the genetic components of PCOS, and we can ensure that diagnoses are not delayed.
Together, we can improve the health for all PCOS sufferers.
Let's talk about how you can help!
Jenifer Gutke
Gretchen Kubacky, Psy.D.