Dermatologists said the cysticacnealong Emilys jawline was a natural result of being 15.
These explanations never convinced Emily, but thebirth control pillsshe was prescribed did help tame her symptoms.
Then when she was 22 she stopped taking them.
Getty Images/ docksnflipflops
Three months after stopping hormonal birth control, Emilys breakouts returned with a vengeance.
Hair started to sprout just below her belly button.
Her irregular periods came back; shed go three, four months without bleeding.
She was no longer a teenager.
So what was the excuse now?
A Google search led Emily to information aboutpolycystic ovary syndrome(PCOS).
Even though she couldnt check off every symptom she read about, PCOS seemed to explain a lot.
Now, Emily wonders whether shell have trouble getting pregnant, as many people with PCOS do.
That’s the thing about PCOS, she tells SELF.
I’m like, What the hell is actually going on?
Doctors would like to know too.
Based on what we do know, PCOS is a hormonal and metabolic disorder.
Its diagnostic criteria can vary, which is a complicated issue well explore in a bit.
The good news is that experts arent giving up on figuring out PCOS.
What causes PCOS?
Excess insulin brought on by insulin resistance is thought to be a significant factor.
This gets pretty complicated, but bear with us.
But if you have insulin resistance, your cells dont absorb glucose like they should.
(Insulin resistance can also lead topre-diabetesandtype 2 diabetesover time.)
Well, youre in great company, because doctors arent too sure either.
But elevated androgen levels arent always a sign of PCOS.
Genetics could also be a factor in PCOS development.
Researchers have begun to unravel the genetic origins of this disorder through DNA samples.
There are actually multiple versions of PCOS diagnostic criteria out there.
But the specific mix of symptoms doctors are looking for depends onthe exact diagnostic criteriatheyre using.
(Not everyone with PCOS even has these extra follicles and some peoplewithoutPCOS have them, theCDCexplains.)
Its no wonder why people like Emily often see multiple doctors before receiving a PCOS diagnosis.
Because the consensus among experts is that PCOS hasno cure, researchers focus on treatment.
Many people with PCOS have to mix and match drugs to find relief.
(Diet has been shown to help reduce PCOS symptoms in some people.
you’re free to read all about thathere.)
The future needs to be on prevention, Redman says.
The challenges of researching PCOS
So why dont we know enough about this disorder?
Recruiting participants and keeping them enrolled is one major challenge in investigatingPCOS, Redman says.
Its not just about the personal payoff, though.
They’ve been so frustrated with their own cases that they want to help out.
Then theres the process of actually participating in the studies.
In general, the more prolonged studies are, the higher the dropout rates are, Dr. Dunaif adds.
The highest dropout rates in these studies are usually in your control group, your normal subjects.
A lack of financial backing is another huge barrier in PCOS research.
Looking at how much of that funding goes to PCOS paints a pretty telling picture.
There are a few reasons why this may be the case.
That doesnt mean this doesnt happen, but its less common.
With fewer competitive researchers come fewer breakthrough studies, Dr. Azziz explains.
One proposed solution to expand the PCOS funding pool is aname changeto be more all-encompassing.
Experts havent agreed upon a new name yet.
On-the-ground advocates are helping to push for this much-needed research as well.
Congressional action can lead to more awareness and research funding, Dr. Azziz says.
PCOS Challenge has been doing a tremendous amount of work trying to move awareness forward, he adds.
Ottey and her team found that other conditions had earned spots on the calendar ofNational Health Observances.
So, the organization decided that PCOS needed an awareness month.
In February 2019, the U.S. House introduced itsresolutionto make September 2019 the second official PCOS Awareness Month.
We’re taking back control by sharing our stories, Ottey tells SELF.
When I was diagnosed, I was more relieved than anything, Emily says.
I would just rather know.
