Not everyone wants to share details when it comes to issues around their health, but a growing number of celebrities are opening up about what it's like to live with Polycystic ovary syndrome (PCOS) in the hopes that it raises awareness for others.
Keke Palmer and Bebe Rexha have shared their own PCOS diagnosis in the past and How I Met Your Father actress Francia Raisa is the latest celeb to come forward.
Raisa revealed that she was "learning how to live with [PCOS]" in her Instagram stories in early August, as per a report by People.
The actress followed up later in the week saying the diagnosis came when she froze her eggs two years ago.
"During those tests was when I found out and a lot of stuff made sense. But I wasn't advised on how to take care of it or how to manage it," she said in the clip. "So it's really been through word of mouth with girlfriends trying to figure something out. I don't necessarily have a solution or an answer."
In another Instagram stories post she said she felt like "an insane person until [she] found out" that's what she had.
"At least I know what's going on with my body but the work is hard!" she added. "It's definitely a lifestyle change."
A screenshot of Francia Raisa's Instagram story.@franciaraisa | Instagram
Raisa certainly isn't the only celeb to be vocal about PCOS and how it's affected her life.
Singer Bebe Rexha is another star who has been transparent about her own journey. During an appearance on the Jennifer Hudson Show, the musician opened up about how how "tough" it's been to see all the comments about her weight after gaining 30 pounds.
"I went to the doctor last year — and a lot of women actually have this and they don't know about it — but they diagnosed [me] with PCOS, which is polycystic ovary syndrome," she shared.
"It's one of the leading causes of why women gain weight and are obese."
Pretty Little Liars actress Sasha Pieterse shared similar sentiments about her own diagnosis that took years to confirm during an interview on The Squeeze podcast on August 9.
"When I turned, it was probably around 15-16, that I started noticing a difference in just my metabolism in general," she explained on the podcast. "At 17, I gained 70 pounds in the year, for no reason. There was no explanation for it."
Back in 2020, Palmer shared how PCOS had been "attacking [her] from the inside out" and she had "no idea" until she noticed facial hair and started doing her own research.
The recurring theme in all of these stories seems to be that PCOS affects a lot of women different and getting a diagnosis is not as straightforward as many would assume.
Dr. Donna Vine, a professor in the faculty of agricultural, life & environmental sciences at the University of Alberta and an expert on PCOS, says that's because the condition is a "disease of exclusion."
"We rule out all other hormonal disorders that could cause similar symptoms and this is why a diagnosis is prolonged [...] symptoms vary, symptoms change over time," she told Narcity.
From the symptoms to how PCOS can impact a person's mental health, here's what living with the disease is like and what experts recommend in terms of treatment.
What is PCOS?
Polycystic ovary syndrome (PCOS) is a hormone imbalance in which a woman's ovaries produce an "abnormal amount" of male sex hormones, according to Johns Hopkins Medicine. Women typically have these hormones, but in small amounts.
Some women who have PCOS may have cysts form on their ovaries, which is where the name of the disease comes from.
What some people may be unaware of, is just how common it is.
Vine says PCOS is a "significant disease" that affects around 10% of all females across their life.
While PCOS is hormonal due to the increased testosterone, it's also metabolic.
"It has metabolic effects as well because of those high androgens or high testosterone. And the interesting thing that impacts health and quality of life across the lifespan. It's not just in young women, it's out through to post menopause," Vine says.
"So it is a lifelong disease and a journey for those who are affected by PCOS across their lifetime."
What are the symptoms of PCOS?
PCOS symptoms can vary among women, but according to Johns Hopkins Medicine, some common ones may include:
- Irregular or missed periods
- Cysts on ovaries
- Excess body hair
- Weight gain
- Acne or oily skin
- Thinning hair or male-pattern baldness
- Infertility
"They might not have a menstruation for several months. They may also have very heavy menstruation," she told Narcity.
"They also can develop what we call male pattern hair growth, which can be really disturbing for a young adolescent girl."
The PCOS expert adds that if cysts develop on the ovaries, that could also lead to severe abdominal pain and discolouration of the skin.
How is PCOS diagnosed?
There is no specific test for PCOS and that's why getting a diagnosis could take a while.
The Mayo Clinic outlines that a doctor may first go over symptoms with a patient, medications and a physical exam before recommending certain tests.
According to the clinic, specific tests that could lead to a diagnosis include:
- A pelvic exam which can indicate growths or masses on reproductive organs
- Blood tests which can measure hormone levels
- An ultrasound which can check on a person's ovaries and the thickness of the uterus lining
Is PCOS a serious problem?
Vine says PCOS is very serious when you consider how painful it can be if cysts develop on a woman's ovaries.
Infertility is another serious concern.
"Many women might not even know they have PCOS until they're actually trying to get pregnant," Vine added.
Another painful condition that is a concern is endometriosis, which is a painful disease of the uterus that can cause heavy menstruation.
"All of these impact quality of life, emotional health, physical health," Vine says.
"There's also the longer term health risks of diabetes, cardiovascular disease, mental illness, like eating disorders, anxiety, depression, and so this is accumulative over time and this can trigger PCOS as well."
Does PCOS affect a woman's fertility?
While infertility is a concern for women with PCOS, it doesn't mean they won't get pregnant.
Vine says she's seen women with PCOS give birth to several children, while others have to go through treatments like in vitro fertilization (IVF) or other preconception health intervention.
"For patients wanting to get pregnant, they step into a whole other area of assessment for fertility."
What causes PCOS?
The exact cause of PCOS is unknown, but Vine says when it comes to who is at higher risk of developing the disease can be due to underlying genetic factors.
"Those at increased risk are those that may have increased body weight as an adolescent, may have already pre-diabetes and elevated insulin levels which tends to occur first and they are most at risk because it triggers high levels of testosterone."
What does treatment for PCOS look like?
There is no cure for PCOS because it's multifactorial with many different symptoms and potential causes, Vine says. That also means that treatment can look different for different people and may include trial and error before a doctor can determine what works best.
The University of Alberta professor says the first line of intervention for someone with PCOS would be addressing their diet, lifestyle behaviours and their mental health.
Following that, Vine recommends oral contraceptives to regulate a person's menstrual cycles and normalize testosterone levels.
"There are other what we call anti-androgens that can be used to lower testosterone or block testosterone's actions to reduce those symptoms of that male pattern hair growth, for example," she added.
Another common medication that is used for PCOS patients is an anti-diabetes drug called Metformin to help improve blood glucose and insulin levels.
More recently, even the popular diabetes medication Ozempic has been used to help PCOS patients.
"We just don't have long term data on some of those drugs and many patients would rather address their overall healthy lifestyle habits than take a drug or a medication because all of these medications have side effects which are not well tolerated," Vine says.
What lifestyle changes are recommended for someone with PCOS?
When it comes to living with PCOS, Vine says there are certain lifestyle changes she would recommend to a patient.
Nutrition and eating habits are super important and Vine says seeing a dietitian can be helpful to ensure a person is on the right path. Sleep, exercise and mental health are just as important.
"It's now recommended that individuals be screened for any mental illness and then referred to specialists to really help them deal with their disease," Vine explained.
The PCOS expert calls the disease a "cyclical problem" because of how broad it is and how it impacts both mental and physical aspects of life.
Unfortunately, the support for PCOS patients is lacking in some regard.
Vine says that she has seen patients who wish they could have time off work to deal focus on treating the disease and learning to live with it.
"Unlike diabetes and cancer and other diseases, PCOS really slips through the cracks in the healthcare system," Vine says.
"We're not treated like a disease that just sort of treated for their symptoms rather than the whole person and all of the aspects of the disease and that's something we're trying to work on."
This interview has been condensed and edited for clarity.
These Celebs Have Opened Up About Life With PCOS & Here's What Having The Condition Is Like
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