Natasha D’souza has one piece of advice for any woman who believes she may have PCOS, aka Polycystic ovary syndrome.
“Get a good doctor that treats the causes,” she says, “and not just the symptoms”.
PCOS is a hormonal disorder common among women of reproductive age that is often undiagnosed, so women have a hard time getting the care and support that they need.
According to the recent Apple Women’s Healthy Study, about 12 percent of 30,000 women surveyed about their reproductive history reported a diagnosis of PCOS, and 26 percent of those reported unpredictable menstrual cycles within one year of being diagnosed with PCOS. The research was conducted by the Harvard TH Chan School of Public Health, the National Institute of Environmental Health Sciences, and Apple, examining reproductive history surveys from November 2019 through December 2021.
The number could actually be much higher, explains Dr Sara Suliman is a consultant endocrinologist and diabetologist at the Imperial College London Diabetes Centre in Abu Dhabi.
“I think we need to accept that it is a variant of normal now,” she says, “because between 1 in 10 to 1 in 20 women suffer with a degree of polycystic ovarian syndrome.”
Dr Suliman explains that while some cases of PCOS are genetic, most are a reflection of insulin resistance. Insulin resistance is what happens when cells in the body don’t respond well to insulin and can’t easily absorb enough of the glucose from the blood they need to function. The pancreas then has to make more insulin just to help get glucose where it needs to go. The cause of insulin resistance? Usually it’s due to being sedentary, eating a high-carbohydrate diet and being overweight, with the weight concentrated in the belly.
Women who are insulin resistant are exposing their ovaries to more insulin, Dr Suliman explains.
“In a normal cycle, a woman will produce lots of ova in the ovaries and then one or sometimes two, will start to enlarge and give a message to all the rest that, ‘it’s my turn this month, can you all go away?” she says.
A healthy woman releases the ovum during her monthly cycle and if there is fertilization, it becomes a baby. If it doesn’t, the whole cycle starts again.
What happens in PCOS, in part due to high insulin, is that “a small war occurs between the ova and nobody gives in”, explains Dr Suliman.
The ova overdevelop and produce extra hormones, both estrogen and progesterone, but also male hormones like testosterone. It is those hormones that cause PCOS symptoms, which can be infrequent or prolonged cycles, extra hair growth on various parts of the body, hair loss, and infertility. The loop continues, where insulin resistance increases hormones levels and the hormones increase the insulin resistance.
“It feeds off itself, and breaking that cycle is key to managing the whole situation,” explains Dr Suliman. “We tend to try managing polycystic ovarian syndrome looking at three or four different arms. The most important, in my view, is the metabolic effects, so the risk of diabetes, high blood pressure, high cholesterol, which are linked to that.”
The Apple research also found that participants with PCOS have a higher prevalence of other conditions that can eventually negatively impact heart health. For example, participants were four times more likely to be pre-diabetic, three times more likely to have Type 2 diabetes and two times more likely to have high blood pressure and high cholesterol. According to researchers, tracking periods and symptoms can help your doctor make a diagnosis, which is critical in risk assessment, prevention of some unwanted effects of the disease and the implementation of changes in your routine towards better health.
All those risk factors, says Dr Suliman, is why adopting a healthy lifestyle and reducing weight are key to interrupting the insulin resistance loops and restoring fertility, she said. Cosmetic effects can also be managed along the way.
Dr Lama Elhossary, a specialist in obstetrics and gynecology at Danat Al Emarat Hospital, explains that a PCOS diagnosis should be done according to a standardized process called the Rotterdam Criteria. To be diagnosed, women need to meet two out of three criteria:
- Irregular or scanty periods, a tendency to gain weight or a resistance to weight loss, the appearance of acne and/or symptoms of hyperandrogenism – such as increased male-pattern hair growth, including excessive facial hair.
- Hormonal test results that support these symptoms, like the presence of excess androgens, reversed ovarian hormone levels and excess insulin.
- An ultrasound that reveals the appearance of a polycystic ovary according to certain objective radiologic criteria.
“The actual diagnosis of PCOS is not simple, and numerous similar variations of symptoms that occur often give rise to misdiagnoses,” she explains. “Women with PCOS need to work with their doctor to start their treatment and also review the success of their treatment process… Successful treatment of PCOS starts with conversation and education.”
PCOS is tricky because there is no “one treatment suits all”, she explains. Instead clinicians must assess how the condition is impacting quality of life of each woman they treat, finding out their particular major concerns and proceeding accordingly.
“For example, women who find that irregular periods may be causing them an inconvenience, often elect to go on the pill, while women who have concerns such as excess male pattern hair growth and acne, may choose to receive anti-androgen therapy,” she says.
Dr Elhossary says treatment options should start with lifestyle modifications, including eating a PCOS-friendly diet rich in vegetables, and avoiding processed or soya-based foods.
“Practicing fasting patterns can also help with endogenous insulin resistance, as does taking supplements that support cellular health, like inositol,” she says.
Not everyone is as well-versed in PCOS treatment, however. Many doctors respond by putting the patient on birth control regardless of their main concerns, and it doesn’t always go well. That is what happened with Natasha, who is 36 and lives in Dubai.
“I was first diagnosed with PCOS in 2012,” she says. “I had just completed uni and was facing issues with irregular periods and sudden weight gain. The doctor at the time immediately put me on birth control pills, which I think was responsible for more health complications; it escalated my hormones being thrown out of whack. It was a band-aid solution. There was no investigation into my weight gain.”
Paige Andrade, 30, also living in Dubai, had a similar experience.
“I was exhibiting symptoms and was initially put on birth control, which alleviated many of those symptoms,” she says. “After a year I knew it wasn’t a sustainable option and I didn’t want to be on medication for life, so I stopped taking it and instead just tried to focus on making lifestyle changes.”
Oral contraceptive pills (OCPs) are the appropriate first-line therapy for treatment of menstrual irregularity, acne, and hirsutism in women with PCOS, explains Dr Maya Alwan, specialist obstetrician and gynecologist at Medcare, if not for the PCOS itself.
“This is due to the fact that OCPs decrease the Luteinizing Hormone, reduce androgen production, and increase sex hormone-binding globulin, which binds androgens,” says Dr Alwan. “Several new formulations of OCPs have been developed to decrease the side effects. This includes use of less androgenic progestins and lower doses of ethinyl estradiol. The doctor will choose the right type of OCPs, which will alleviate the symptoms with least side effects.”
Again, Dr Suliman stresses that treatment routes are contingent on each patient.
“For example, if we’re getting someone who wants to get pregnant, the birth control pill, absolutely is not the correct choice,” she says. “However, the question is, ‘how do I get rid of the excess hair?’ Then actually, often we will use the birth control pill in combination with other therapies to stop the testosterone. Often, it is for a six to nine-month period to allow all the hormones to correct because it’s an easy reset, then they can have laser, which is a more permanent treatment, and come off the birth control.”
Both Natasha and Paige have taken responsibility for their own healing, and have seen improvements.
Paige became more conscious about the types of food she consumes, and switched from HIIT workouts to weightlifting, walking, yoga and meditation.
Natasha has struggled to lose weight, but is keeping at it.
“Some of the changes I’ve made are to only consume sugar through fruits that work for PCOS such as berries, green apple and pears,” she says. “I’ve also cut out carbs, although rice is my weakness; limited dining out and gave up alcohol completely. I have also included more exercise on a weekly basis.”
Although in her experience doctors tend to focus on weight, when it comes to PCOS Natasha points out there is so much more going on — and it’s important for each women to understand what is happening.
“Most of them will take one look and refuse to do a thorough investigation of blood work,” she says. “It was only after I personally started reading about the topic through internet research, that I found out about PCOS and its life-long effects.”
Not everyone who has PCOS is overweight, however. Dr Suliman ended up doing her PhD on insulin resistance and body fat distribution, and why some people who aren’t obese are predisposed to diabetes, all based on one interesting case: a waif of a patient with a BMI of 18.
“She had quite marked insulin resistance,” she explained. “As it evolved later on from my PhD, she did have a gene that was disrupted. She was predisposed to insulin resistance and had a metabolic profile, similar to someone who probably had a body mass index of 40 or more.”
Whatever the cause of PCOS, Dr Elhossary wants women to know that while the condition is chronic and treatment is a long-term process, it usually improves with age as the ovarian reserve slowly declines.