After being diagnosed with Polycystic Ovarian Syndrome (PCOS), Jane Tam worried about her facial hair and pimples on a day-to-day basis.
Tam is one of the millions of women around the world whose reproductive, cardiovascular, and mental health is affected by PCOS.
According to the Centers for Disease Control and Prevention (CDC) studies, PCOS is a complicated but primitive metabolic and reproductive disorder in women.
“At the time, I did not have a feeling that I wanted to kill myself, but I felt like I would have probably jumped from the building I was living in,” Tam said.
The 32-year-old from Naga in the Bicol Region about 380 kilometres southeast of the capital Manila, was first diagnosed with PCOS at the age of 16.
Jane Tam exhibits her PCOS drug regimen. Tam is one of the millions of women around the world who deal with PCOS. Photo credit: Heta Khakhar
She said she recalls being unable to find a proper diagnosis and seeking help from multiple gynaecologists. Unfortunately, many of them were dismissive when asked if depression was related to PCOS.
Dr. Jerilynn Prior, professor of Endocrinology at the University of British Columbia, has a different perspective when it comes to PCOS. She said people with PCOS should not view it as a disease, but rather as an imbalance that can be corrected with the right approach.
Prior said PCOS can be identified when two of three symptoms are present, including irregular or absent periods, overproduction of androgens in the blood (hyperandrogenism), and physical manifestations like body hair growth, hair loss and acne.
In addition, Prior said most women with PCOS develop many small cysts on their ovaries, which often lead to menstrual cycle problems and difficulty conceiving.
According to the World Health Organization, about 116 million women are affected by PCOS worldwide.
In spite of that, 70 per cent of cases remain undiagnosed.
At the start of the pandemic in 2020, Tam said she was first diagnosed with Generalised Anxiety Disorder (GAD) and with depression soon after.
She said she developed a multitude of health issues because of PCOS, including hypertension, Obsessive Compulsive Disorder and GAD.
To maintain her insulin levels, Tam said she must take multiple medications every day. Unfortunately, these are only bandage solutions to the risk factors associated with these disorders.
Difficult periods and fertility issues are just two of the issues Tam still faces.
Additionally, Prior said insulin resistance and central obesity are common problems. Cells can’t effectively absorb glucose if they have insulin resistance.
As a result, she said blood sugar levels might increase, which could have a number of negative effects on health.
Prior said depression may result from the body’s ineffective use of insulin, creating a vicious cycle.
Tam said she began to feel isolated and helpless, as she was unable to talk to anyone about her plight of not finding a proper diagnosis. With no one to turn to, she said she became desperate for help.
Fortunately, Tam said she found a support group called Letters Against Depression based in Florida, which provides hope and support to those struggling with mental illness through the power of handwritten letters.
Tam said this gave her the support she needed, and helped her to feel less alone in her journey to finding a diagnosis and managing her mental health.
Research shows most women affected by PCOS are insulin resistant, which prevents their cells from properly absorbing glucose. As a result, they said blood sugar levels rise, which can lead to a variety of adverse health effects.
Prior says there is no cure for PCOS. There are, however, several treatments that can help manage its symptoms. These treatments involve lifestyle management and oral contraceptive pills.
While lifestyle management can help manage the symptoms of PCOS, it is not a cure. Prior said it’s important to speak with a doctor to determine the best treatment plan.
“PCOS is like a dark cloud that lingers no matter what,” Tam said. “Even if you go through a full hysterectomy, it will not make the PCOS go away. It is always present, like a shadow for every inch of light in your life.”
Tam said women living with it should avoid seeking consultation from public clinics, and not rely on social media or crowdsourcing for information about their symptoms.
She said these sources of information are unreliable and do not provide the best advice for managing PCOS.
Instead, Tam said women should seek out professional medical advice from a qualified doctor or health care provider.
She said this will ensure they receive the most accurate and up-to-date information about their condition, and the best treatment options available.