What PCOS warriors go through in fighting a lifelong battle

A day after her final research defense in 2021, senior high student Ashley Artita suddenly experienced immense abdominal pain. Rushed to the hospital, she underwent a series of medical tests, expecting it to be nothing more than acid reflux due to academic stress.  

Instead, doctors discovered she had a ruptured ovarian cyst. 

Ashley, now 22, was diagnosed with Polycystic Ovarian Syndrome (PCOS)—a chronic gynecologic disorder affecting women of reproductive age, typically around 15 years old and above. Data from the World Health Organization (WHO) revealed that around 6 to 13% of reproductive-aged women worldwide are diagnosed with PCOS.

While Ashley was able to undergo surgery to remove the ruptured ovarian cyst, she believes the incident could have been prevented only if she was given proper diagnosis the first time she got checked up. 

She had already gone to an obstetrician-gynecologist years before the incident because of her irregular menstruation. Ashley experienced having no menstrual period for three months, followed by heavy bleeding that lasted an entire month.

However, since she was still a minor at that time, the doctor said it was “too early” to conclude that she has PCOS. “Yung PCOS kasi, it’s not something that people have been [talking about]… Kasi, imagine, ‘yung case ko, this could have been prevented or somewhat managed pero hindi nangyari kasi nga hindi siya something na napag-uusapan,” she said. 

Now having multiple cysts in both her right and left ovaries, Ashley continues her fight against PCOS.

Inadequate data

Despite the dangers of said condition, there remains a lack of comprehensive data on the incidence of PCOS among Filipino women. 

While the Philippine Obstetrical and Gynecological Society (POGS) records the number of women clinically diagnosed with PCOS every year, their data only comes from the 85 POGS-accredited hospitals in the country, 21 located in the National Capital Region.

Since POGS-accredited hospitals are the only ones mandated to report PCOS incidence numbers, this leads to incomplete data. This shows the country does not have a “good record-keeping system,” said maternal and fetal specialist Dr. Maynila Domingo.

“‘Yun lang yung nakukuhanan ng data, e napakaraming other private [institutions] na doon nagpupunta [ang patients]. Sa DOH naman, hindi kasi nila ‘yan regularly ina-ask sa women’s health,” she added. 

The obstetrician-gynecologist also cited the risk of underdiagnosing and overdiagnosing PCOS as contributing factors to the lack of comprehensive data. 

Some patients, she said, will immediately think they have PCOS because of the presence of ovarian cysts in their ultrasound. However, at least two components of the Rotterdam criteria need to be present for a patient to be diagnosed with PCOS, said Domingo.

“Because we’re giving [the patient] a diagnosis of a syndrome, we should qualify at least two. Kasi when you’re diagnosed with PCOS, it’s a lifetime. It’s not like an infection that can be treated,” she explained.

A person will be clinically diagnosed with PCOS if they meet at least two of the three components under the Rotterdam criteria.

“First is a sign of anovulation. Normally, a woman ovulates every month in a regular cycle. If that cycle is interrupted, it’s manifested [through] having irregular periods,” said Domingo. “She can have no periods at all,  or long intervals between periods, or heavy bleeding. As long as the bleeding is abnormal, it can be a sign of anovulation.” 

Another component under the said criteria is hyperandrogenism or the excessive amount of androgens compared to what is expected in a reproductive-aged woman. One common manifestation of this is hirsutism—a medical term for excess hair growth.

“It means lang that the growth of the hair is similar to males. So, may bigote, very curly o makapal ang balahibo,” she added. 

The last component under the Rotterdam criteria is the appearance of multiple ovarian cysts, which are detected through ultrasound imaging.

Early diagnosis of PCOS is also crucial, Domingo emphasized, as it can lead to serious health complications if left untreated, such as metabolic disorders, type 2 diabetes, hypertension, cardiovascular disease, and infertility.

But aside from these possible complications, reproductive endocrinologist Dr. Margaret Cristi-Limson said that having irregular periods may make women prone to develop endometrial hyperplasia, a condition where the lining of the uterus becomes abnormally thick. And in severe cases, it can even progress to endometrial cancer. 

However, most women delay–or even avoid–seeking medical help despite experiencing irregular menstruation or severe dysmenorrhea. Domingo noted that socioeconomic factors also come into play–some people simply cannot afford to visit a doctor.

Domingo then suggested that the country needs a nationwide initiative to collect complete data from every hospital and clinic.

 “We do not really know the extent of the problem in the Philippine setting. ‘Yung availability ng data na ‘yun can really be helpful to address the problem lalo na kung national level siya,” Domingo added.

Cristi-Limson, meanwhile, attributed the insufficient data to the inadequate compensation of researchers in the country.

“The incentive to actually do research to define epidemiology is not rewarded very well locally nor is it supported by [the] government to be able to establish such data,” she said.

The Philippines lags behind other countries in collecting epidemiological data, not just on PCOS but also on many other diseases, Cristi-Limson added.

Tracking the roots

While the exact cause of PCOS remains unclear, there are several factors attributed to higher risk of developing the condition, such as genetics, unhealthy diet, and sedentary lifestyle.

“We do test sugar levels for patients with PCOS because we think that’s an underlying problem. So if a patient adheres to high sugar diet [and] carbohydrates, then, napu-push talaga ‘yung manifestations ng PCOS,” said Cristi-Limson. PCOS is a hormonal imbalance primarily brought about by the impaired insulin systems with compensatory hyperinsulinemia. 

In hyperinsulinemia, there is an unusual amount of insulin in the blood. When the body produces too much insulin, which is the hormone responsible for controlling blood sugar levels, the cells may not be able to respond properly, causing various health problems such as diabetes and PCOS.

Since insulin resistance can be inherited, women who have a family history of type 2 diabetes are more prone to developing PCOS.

However, Essie Reyes, 23, believes she developed PCOS because of the nature of her work and unhealthy diet. As an English tutor, Essie is on a work-from-home set up that requires her to be on the computer from 1 p.m. to 6 a.m. the next day. After clocking out from work, she would feel too drained to exercise or take even a short walk outside, which causes her to live a sedentary, inactive lifestyle.

Like many women, Essie visited an obstetrician-gynecologist in 2019 due to her irregular periods—sometimes her cycle would only be a week apart, while other months she would not have a period at all.

“Bukod sa work ko, ‘yung hilig ko rin sa mga powdered drinks, dun ko daw siya nakuha. Sabi ng doctor, ‘Mahilig ka sa milktea, no? Mahilig ka sa mga sago’t gulaman, sa Milo.’ Aware naman ako na mahilig ako sa ganun,” she added.

Her ultrasound showed that there were around 25 small cysts in both of her ovaries. 

According to Cristi-Limson, the first line of treatment for PCOS patients is always lifestyle changes. 

“The number one management will really be diet and exercise or some form of lifestyle modification to decrease the sugar levels in the body and decrease the insulin levels that bring about the cascade of hormonal problems that cause clinical manifestations of the disease,” she said.

But for Essie, committing to a healthier lifestyle is challenging.

“In terms of diet, wala, kasi the last time na nag-diet ako, walang nangyari. Medyo gumastos pa ko nu’n kasi pag diet ka, may mga certain foods lang na pwede,” she admitted. “At the same time, pag nag-eexercise ako, feeling ko wala talaga akong motivation. Pagod na ko e [sa work], babagsak na ko.”

One pill at a time

OCPs are typically prescribed to PCOS patients with abnormal menstruation to control their hormones and regulate their periods. These OCPs, however, are not a one-size-fits-all solution, as Domingo clarified. Medical specialists tailor their prescription of pills depending on the patient’s clinical profile. They base it on a “scoring system” which guides them to choose the best pills for the patient.

For instance, OCPs with lower estrogen content are given to patients classified as overweight or obese to reduce the risk of blood clots. Knowing the reproductive plans of the patient is equally important, Domingo added, as those trying to conceive cannot take OCPs.

“We ask the patient always, ‘Ano ba ‘yung plan? Are you trying to get pregnant now? Are you trying to avoid pregnancy?’ Always in combination ‘yun, ‘yung reproductive plans and clinical profile,” she said.

But more importantly, Domingo considers the financial capability of a patient to buy OCPs since they do not automatically assume a patient can afford such treatment.

The prices of OCPs vary depending on the brand. The cheapest one costs around P400 for 21 tablets, which lasts for a month, while others can go as high as P800 to P900.

“Kung sa middle-income patients, okay lang [ang price]. Pero for others, hindi, 900 per month is a lot,” she said, “Kung reresetahan mo siya nu’n [at] alam mong hindi niya ma-aafford, hindi rin siya mag-cocomply, hindi rin siya mati-treat.”

Yet financial expenses are not the only cost that comes with taking OCPs. 

Tep de Vera, 31, has been battling PCOS for over 17 years now. For her, the emotional torment was the most agonizing side effect of the pills that she had to endure. 

She recalled a time when she was eating at a restaurant during her lunch break from work. At that time, she also just started taking a new brand of OCPs.

“Wala akong problem that day. [Pero] I was crying du’n sa restaurant, tapos parang sobrang empty ng nararamdaman ko,” she said, “Nung pabalik na ako ng office, as in, blank [emotions], pero may luha.”

While switching from one brand of pills to another is normal, particularly when the patient reports extreme side effects or discomfort, Domingo said there is a proper way of changing prescriptions. 

“When we shift pills… we also advise them [patients] na ‘Okay, you allow your body to adjust to the hormone changes for a while. Kasi basically, pag binigyan mo sila ng pills, binabago mo yung hormone levels nila. So natural na may konti siyang side effects,” she explained.

Another factor that may exacerbate the side effects of OCPs is if they are not taken regularly. One hormonal pill should be taken ideally at the same time every day for 21 days. After that, the patient shall stop taking pills for seven days to allow for a withdrawal bleeding or period. 

But there are some packs of pills that contain placebo pills meant to be taken during the one-week break. These placebo pills do not contain active ingredients but help maintain the routine of taking a pill daily.

Failure to take the pills regularly can cause hormonal fluctuations, said Domingo. In the worst-case scenario, it could lead to sudden heavy bleeding. 

Dreams on hold

Married for almost four years, Tep and her husband have been wanting to start their own family. 

But it seems like that dream may have to wait for now.

PCOS is known to be one of the leading causes of infertility among women. A 2015 study by the National Library of Medicine revealed that around 70 to 80% of women with PCOS suffer from infertility.

Cristi-Limson, however, clarified that PCOS patients may still be capable of conceiving. Yet since most of them do not ovulate regularly, it can be harder to achieve a successful pregnancy.

Despite being diagnosed with PCOS for more than a decade, it was only last year when Tep went to a new obstetrician-gynecologist and found out that she has underlying diseases, such as hypothyroidism and fatty liver, that exacerbate the manifestations of PCOS. 

“We’re trying [to conceive] for two years… Pwede naman daw akong mabuntis [according to my doctor] , but if I [force myself] to get pregnant with my weight, me and my baby can have complications” Tep said. 

Her new doctor not only prescribed medicines to treat her hypothyroidism, but also guided her how to properly lose weight. 

She and her husband began controlling their carbohydrate intake, cutting down from two cups of rice each to one cup each.They also subscribed to a gym membership and have been actively working out at least three to four times a week. 

Through these efforts, Tep feels healthier now more than ever. She plans to continue focusing on her well-being first before attempting to conceive again.

“Sa ngayon, hindi muna kami nag-tatry [mag-conceive]. We really want to hit our weight goal para na rin hindi kami magkaroon ng complications. Next year, hopefully by next year [magka-baby na].”

‘Invisible’ manifestations

While most clinical manifestations of PCOS are visible to the human eye, some remain ‘invisible’ — those scars that are so enduring, so deeply-ingrained.

“These patients sometimes don't feel beautiful. There’s acne, they’re obese. So merong anxiety component din ‘yan. Some will have some degree of depression,” said Cristi-Limson. 

At 26, Myka Barcena shared that she still does not know how to apply cosmetics to her face. While many of her peers are obsessed with makeup products, she finds it hard to wear even a lipstick. 

She got diagnosed with PCOS in 2013 when she was still in third-year high school. Myka has all three elements in the Rotterdam criteria, but hirsutism or excessive hair growth remains her deepest insecurity. 

“Meron akong mustache, hindi naman siya ganun kakapal pero makapal siya for a female. Meron ding maliliit na tumutubo sa chin ko. Ayaw ko maglagay ng lipstick kasi feeling ko naha-highlight siya (facial hair),” she said. 

Myka was diagnosed with anxiety disorder in 2019. Although she does not directly associate this with PCOS, she believes that taking OCPs significantly contributed to her mood fluctuations. 

For more than three years, Myka feared looking at herself in the mirror. She couldn’t bear seeing her insecurity—her facial hair—staring back at her.

As difficult as it was, she still wanted to take ‘baby steps’ towards self-acceptance. 

“‘Yung isa kong mirror na nasa loob lang ng cabinet, nilabas ko. Dinadahan-dahan kong tanggapin,” she said. “Recently lang, nag-lipstick ako.”

EDITOR’S NOTE: The original version of this article was submitted for a J197 class under Asst. Prof. Adelle Chua