How woman with PCOS are showing they are unbreakable despite the odds | A life-defining diagnosis
September is Polycystic Ovarian Syndrome Awareness Month.
Receiving a health diagnosis is a life-changing moment for many, whether it's cancer, infertility or diabetes; navigating a world you once knew all over again is challenging.
September is Polycystic Ovarian Syndrome Awareness Month.
Many women are advocating for themselves as they search for answers to help them battle the disorder that often is overlooked or dismissed.
Two women share their road to advocating for their health and themselves, navigating the symptoms and treatment of PCOS.
The Stories
'I felt dehumanized' | Sasha's story
For PCOS Challenge founder Sasha Ottey, what started with some missed periods led to her complex diagnosis of polycystic ovaries in 2008. After her diagnosis, her provider handed her a pamphlet and told her to come back when she was ready to get pregnant.
"This became a defining moment in my life because I felt dismissed," she said.
At that moment in her life, Ottey did not know how drastically her life would change now, knowing her diagnosis.
As more doctors told her to lose weight with no guidance or resources and her insurance not helping to pay for specific treatments, she "had to get creative."
So, she focused on researching PCOS, learning more about women who have the disorder, and educating herself about the different treatment plans.
As she continued through her treatment of weight loss, diet and exercise, her mental health became a topic of concern.
"It was unhealthy how I would focus on losing weight. I joined boot camps. It was in a disordered eating way. That really impacts your quality of life. I quickly understood that being overly restrictive increased anxiety for me and just wasn't the way for me to live," she added.
As Ottey continued grappling with the symptoms of PCOS and navigating how to cope with the new complex lifestyle change, she finally determined she wanted to have kids.
In her late 30s, she found out she had infertility issues due to having PCOS while trying for her daughter, but she was successful through IVF after a years-long journey.
It was not long after she gave birth to her daughter that she began to feel that something was not right following a Caesarean section. She tried to tell her doctors that she was bleeding heavily but was ignored and told to take Tylenol.
She added that she knew the statistics about maternal mortality. Georgia has one of the highest in the country.
Ottey said they finally did an ultrasound and found that there was still retained placenta and other products despite the c-section.
"I felt dehumanized. I felt this is how it happens," she added. "It felt to me like Black women and Black mothers aren't taken seriously. Our lives are not taken seriously enough. That's how I felt."
She had an emergency dilatation and curettage (D&C), which is a very common procedure used to remove tissue from the uterus.
Women with PCOS usually are at higher risk for pregnancy complications if they are successful after several attempts due to infertility.
According to a medical research journal, ScienceDirect, "the most frequently reported pregnancy complications in PCOS are gestational diabetes, miscarriage and preterm delivery, hypertension, and preeclampsia."
Ottey had postpartum preeclampsia and hypertension and was hemorrhaging just five days after having her daughter. What was supposed to be a joyous moment of celebrating her daughter led to her being scared for her life.
'I knew I wasn't crazy' | Savannah's story
11Alive's Savannah Levins was diagnosed in 2023 after she kept telling her doctors, "Something is wrong."
When she finally stopped taking birth control pills that she had been on for over a decade, she was waiting for her period to come back and regulate itself so she could increase her chances of having children in the future.
After about five months with no period, she started to worry as her intuition that something didn't seem right continued to kick in.
"It can take a while since you've been on the pill so long," she said a doctor told her following a visit. "Don't worry yet."
"But I was worried, particularly when other symptoms began to manifest. I quickly gained 25 pounds that I couldn't seem to shake no matter what I did," Levins said. "I was eating healthy balanced meals and going to the gym multiple days a week."
When she went to her primary care doctor, he dismissed her weight gain, saying it "just comes with age."
She finally went to her OBGYN and pleaded her case to run extra tests with a missing period and overweight BMI; she finally received her diagnosis. She was finally relieved to know what was wrong.
"I felt very vindicated and relieved. Like my very first reaction was kind of an exhale of, I knew it. I knew I wasn't crazy," she added.
Levins added that her fewer outward symptoms, such as facial hair and acne, might have delayed her diagnosis.
She added following her diagnosis, it was harder for her to get answers.
"Well, it was really hard because I realized pretty quickly that not every medical professional is very well-versed in PCOS. Even the doctor who diagnosed me couldn't answer a lot of my questions up front," she added. "So I did want a lot of answers, but I did quickly realize that there is not a lot of consensus out there in the medical community."
She added that although she is grateful for her body and all the things it can do for her, Levins said after her diagnosis, she felt like she was "broken."
Levins said it took her a while to share the news of her diagnosis with her family.
"It took me a little while to tell my mom to be honest too, to tell my parents because I didn't want them to be worried," she added. "And I wanted to have a better understanding of what this meant first because I knew my mom was gonna Google 'what is PCOS' and it would say 'leading cause of uterine cancer and infertility.' And so I wanted to have a grasp on it first. And so I had a lot of trepidation telling my family initially."
What is PCOS?
PCOS is a genetic, hormonal, metabolic and reproductive disorder that affects more than 14 million women in the U.S. and millions globally.
It is one of the most critical, under-diagnosed and underfunded areas of health, which can lead to infertility, type 2 diabetes, cardiovascular disease, cancer, liver disease and lifelong complications.
PCOS symptoms
Common symptoms of PCOS include:
- Weight gain that's particularly difficult to lose
- Ovaries with large or many cysts
- Insulin resistance, diagnosed by blood test
- Acne
- Irregular periods, the most common symptom
- Abnormal hair growth on the body
- Thinning hair on the head
- Skin tags
- Mood swings
- Infertility
- Higher levels of male hormones, also known as androgens
- Hormonal imbalances
- Sleep disturbance
According to Dr. Desiree McCarthy-Keith, medical director at Shady Grove Fertility in Atlanta, mental health can also have an impact on women with PCOS.
Those with PCOS have a higher risk of anxiety and depression, she added.
"There's the psychological component of it, and we do a lot of counseling, we connect with our patients and really just help them to just, you know, sometimes patients come in and they're so exhausted and frustrated or defeated already," she added.
How is it diagnosed?
After a patient shows symptoms, doctors typically run several blood tests to check hormone and insulin levels and perform an ultrasound to see if there are visible cysts on the ovaries.
Dr. Desiree McCarthy-Keith, medical director at Shady Grove Fertility in Atlanta, said that doctors look for three criteria: cysts on the ovaries (which look like pearls around the ovaries on an ultrasound), signs of higher testosterone levels (acne, oily skin, unwanted facial hair), and irregular menstrual cycles.
Not all cases of PCOS look the same because there are different phenotypes or combinations of issues that could present the likely factor that a woman has the disorder.
"We do see women who might have milder symptoms kind of in the middle and who really don't have any of the outward symptoms," Dr. McCarthy-Keith added.
Questions after a PCOS diagnosis
What caused this?
Experts don't know.
Some studies indicate it could be genetic, though no one in my family had ever been diagnosed with, or even heard of, PCOS. Other studies suggest nutrition could play a role. Other researchers have hypothesized that obesity and insulin resistance could be a cause, although it's really a 'chicken or the egg' situation. The link there is clear, but it's hard to tell which might be a symptom of the other.
Can I reverse it?
No. Some symptoms can be managed with medication and lifestyle changes, but no cure exists.
Is this uncommon?
Also no.
The World Health Organization estimates that 8–13% of women of reproductive age have PCOS. Other groups have estimated that number to be closer to 20%. Some women may have PCOS and never know it because they don't have any outwardly obvious physical symptoms.
Almost 70% of women with PCOS go undiagnosed. Dr. McCarthy-Keith said some diagnoses can be delayed, especially in teens, due to the irregularity in cycles when puberty is just starting.
Some people with PCOS are able to get pregnant with no problem; others have spent years desperately working with fertility specialists to no avail. Some gain extra weight and can't lose it alone; others never gain a single unwanted pound. Some have facial hair they must grapple with their whole lives; others don't. Some have painful cysts on their ovaries; others don't.
Advocacy/Research
Common treatments
Dr. McCarthy Keith states treatments typically center around lifestyle, including diet and exercise.
She added that doctors focus on helping patients manage the disorder's symptoms since there is no cure.
"The main thing that I tell my patients is that we can manage the effects of PCOS, but this is not a condition that we can cure that you can remove from the system," she added. "So, we really focus on managing whatever symptoms a woman has."
She added that doctors advise women to use a supplement called myoinositol, a chemical compound formed from glucose that can help regulate some hormone fluctuations.
Dr. McCarthy-Keith added that if women are having a hard time getting their cycles back to normal, then doctors will prescribe birth control to help regulate them.
She added that there are risks when women do not have a period or ovulate regularly.
"The concern is that for women who don't ovulate or they don't have a period, the lining in the uterus that needs to be shed every month can just continue to grow and can get thicker and thicker," she added. "And for women who go many months without having a cycle, that thick lining can start to turn into an unhealthy or pre-cancerous tissue. And so to protect the uterus and the body."
That is why birth control is most commonly prescribed. Doctors typically make sure patients have a period every two or three months.
For women who want to get pregnant and have infertility issues, Dr. McCarthy-Keith said that medications like Clomid or Femara can be used to help women with those problems.
Although these are pretty standard treatments, some women feel that there are more out there that could better improve their symptoms and condition.
Is PCOS heavily researched?
According to an NBC News report, a lack of research has led to a "poor understanding" of the disorder.
Underfunding plays a role in the lack of research. According to a report from the Journal of Clinical Endocrinology and Metabolism, women's diseases are typically underfunded globally. However, in the United States, there has been more progress in addressing the funding issue.
The report also states that other health institutes that focus on body systems impacted by PCOS, such as the heart and metabolic systems, do not contribute to funding research.
The NBC report further states that underfunding and a lack of research limit doctors' ability to offer patients new treatments.
Another journal stated that collected data for research on PCOS showed that the number of medical articles has slightly grown throughout a decade (from 2011-2021) with over 10,000 articles. Still, it lacked more research related to other issues that go hand in hand with PCOS.
"It's hard to determine the specific cause for PCOS.," Dr. McCarthy-Keith said. "We do believe it's multifactorial, it's likely genetic, there's some exposure that goes into that. Also, we see it run in families. You can have a higher risk of having diabetes in your family and things like that for women who have PCOS. So we're still doing research just trying to identify the specific targets for what predisposes some women to develop that. The treatments that we have are really always based on just lifestyle."
How are women advocating?
First, it is essential for women who have PCOS to have support or people in the room to help them advocate for them.
"It's a constant battle of advocating for yourself, advocating for the best medications, advocating for the best care, advocating to be listened to," Ottey said.
For women who are dealing with it, Levins said it's best to accept the diagnosis and seek out community to know "you are not alone."
Most women are joining forums online to band together and share information about their treatment plans and research.
Ottey's organization and several other organizations are focused on changing policy around the disorder and trying to help increase the need and funding for research.
"It's all about understanding the patient experience, patient priorities, and what their actual needs are, and we create innovations and treatments around that," she added.
Resources
Mental Health Resources: Contact SAMHSA for general resources on your mental health if you struggle with anxiety and depression with PCOS: https://findtreatment.gov/
To learn more about how PCOS has an impact on mental health and more about self-compassion and self-acceptance resources, click here: https://pcos.together.ualberta.ca/resources/mental-health-resources-2/
PCOS Challenge Support Groups, forums: https://m.pcoschallenge.org/pcos-support/
Find PCOS specialists in your area: https://pcosdirectory.org/
More resources from PCOS Awareness Association: https://www.pcosaa.org/resources-1