Unheard. Unserved. A woman’s battle for a PCOS diagnosis, and how no one was listening

This is the first instalment of a Global News series called Unheard. Unserved. Maritime Women’s Health In Crisis.

In our first story, we introduce you to a New Brunswick woman who struggled for more than two years to get a PCOS diagnosis. 

Brooke Sears is no stranger to having her concerns go unheard.

Over the years, she has had to act as her own doctor, nurse and health advocate — something that became necessary when fighting for a diagnosis for her polycystic ovarian syndrome, otherwise known as PCOS.

PCOS can present differently across patients, but for Sears, it meant acne, irregular periods, hirsutism and extreme difficulty losing weight.

“I just was not understanding why I was failing at this,” Sears says.

“Like, just felt like a failure all the time.”

As a teenager growing up in New Brunswick, Sears was bullied for her weight and was repeatedly put-off by health-care professionals.

“It’s been pretty aggravating,” Sears says. “It’s a lot of extended wait times for things, a lot pushing things to the side, and just sort of, ‘Oh, we’ll tackle that later, we’ll talk about that later.’”

As a member of the Glooscap First Nation, she often felt like she needed to hide her biracial identity from doctors for her symptoms to be taken seriously.

“Indigenous women are especially not considered in the health-care system, but at the same time where I am, you know, a little bit more white presenting, as much as I hate to admit that that is a bit of a privilege, it is,” she says.  “But I strongly feel like if it had to come up, it probably would have resulted in problems.”

The battle begins

It wouldn’t be until Sears’ early 20s when she was referred for PCOS testing in Nova Scotia, that she got a glimmer of hope.

But she says her experience with an OBGYN in Cumberland County was far from encouraging.

“I believe she saw that I was overweight, and she tunnel visioned on that,” Sears says. “I told her, I said, doctor, I eat 800 calories a day and I do intense cardio for an hour a day, five days a week. And … I might lose a pound a week at best.”

But, Sears says, her doctor wasn’t convinced.

“She looked at me and said, ‘Hmm, surely you must be doing something wrong.’”

At that appointment, Sears was also informed they had lost her blood panel results, necessary for indicating hormonal imbalances critical for diagnosing PCOS.

When she offered to re-do the test, she was told it would cost the hospital too much money.

“I’m just basically being dismissed as not being important enough to consider these things,” Sears explains.

Sears says she was handed a low-carb bread recipe and sent on her way.

“I was devastated and shocked. I didn’t know how to respond. I kind of just took her piece of paper she gave me, and I was like, ‘What’s happening?” Sears recalls.

But experts say when women tell their medical providers they are trying to lose weight, and nothing is working — they really need to listen.

“A lot of these PCOS patients … without treatment, they end up with type 2 diabetes — all kinds of other issues, (like) fatty liver disease, things like that,” warns Julie Kane, a nurse practitioner and owner of Bird Island Wellness in Newfoundland.

“This is not something where it’s just a diet or just exercise. A lot of PCOS patients need medical management.”

Treatment options

According to Kane, the first line of defense when tackling the hormonal side of PCOS is progesterone.

“Progesterone is a hormone that is produced in our ovaries,” Kane says. “It is our reproductive hormone. Progesterone is also our feel-good hormone, our sleep hormone, and it is very beneficial.”

Low progesterone levels in women have been normalized by the health-care system. But Kane says less of the hormone can result in the mood imbalances and fertility issues commonly associated with PCOS.

“So, progesterone actually is taken at night, prescribed as a capsule,” Kane says. “There’s different doses in terms of treatment. I start patients at a low dose, and we titrate up depending on how the patient feels.”

Kane says she’s seen patients feel better within days, but a lot of medical providers aren’t aware progesterone is an option.

“The progesterone that I prescribe is bioidentical, meaning when you take it, your levels increase,” Kane explains. “Your levels of progesterone actually increase on your lab work. With birth control and IUDs, I don’t see a change. So, you’re not really getting that benefit.”

Birth control methods do not directly address the root cause due to their synthetic nature, Kane says, despite doctors prescribing them as a ‘catch-all’ treatment for various conditions involving women’s reproductive health.

Something, Tanya Zboril, a nurse practitioner who owns both TBT clinic locations in Ontario and Nova Scotia, wants health-care workers to be wary of.

“They are commonly prescribed because they are effective at stopping the reproductive cycle and improving symptoms. For instance, they remove the amount of free testosterone that can be circulating in the body, which can cause the scalp balding, the dark facial hair, the acne.” Zboril explains.

“But they’re not always well-tolerated, and they come with a risk of blood clots. Which can lead to heart attack and stroke.”

PCOS is not just a hormonal condition, but a metabolic one as well — hence patients’ difficulty gaining and losing weight.

“It’s similar to diabetes in that there are fluctuations in a person’s blood sugar levels. And this is very hard to diagnose with labs,” Kane explains.

When it comes to treating the metabolic side of PCOS, birth control methods aren’t effective.

Zboril says there needs to be a comprehensive approach.

“Right now, Metformin, which is a medication you might have heard associated with diabetes, is considered gold standard as an insulin sensitizer, but results are not always consistent. So, you can look at using GLP (-1s) as well.”

GLP-1, or Glucagon-like peptide-1, is a naturally occurring hormone that helps regulate blood glucose and appetite. Common medications containing it include semaglutide (sold under names such as Ozempic and WeGovy) or tirzepatide (sold under brand names Mounjaro and Zepbound.)

Zboril says there’s also a diuretic called spironolactone that can help block some of that free testosterone and has been known to be an effective treatment to reduce inflammation.

“And almost the most important one — natural thyroid medication should be given because there’s evidence to support the fact that PCOS may be also an autoimmune issue,” Zboril says.

“There’s plenty of women that have PCOS that also have Hashimoto’s (disease), which is an autoimmune thyroid disorder.”

Zboril and Kane both say there is no one-size-fits-all solution for PCOS, meaning practitioners have to have a deep understanding of their patients’ symptoms in order to properly treat it.

An unsophisticated health-care system

Two years following her appointment at the Cumberland County Regional Hospital, Sears’ family practitioner officially diagnosed her with PCOS.

But she says Maritime doctors’ hyperfixation on her weight contributed to disordered eating habits that were challenging to shake.

Researchers estimate about one in ten women have PCOS, says Zboril. But that number could be much higher as many women go undiagnosed.

PCOS patients are also three to six times more likely to develop an eating disorder when their concerns go dismissed, according to findings published in the National Library of Medicine.

“There was a philosophy in emergency medicine that you assume a woman is pregnant until proven otherwise,” Zboril says. “And there’s a statistic that about over six per cent of women who present to an emergency department for some problem, acute issue, will find out that they’re pregnant and don’t even realize it.

“An average of 10 per cent of North American women have PCOS. So, in primary care, every woman should be assumed to have PCOS, unless proven otherwise.”

Due to the challenges in getting diagnosed, many PCOS sufferers look outside the Maritimes to get care.

“I get patients from New Brunswick and from Nova Scotia reaching out to me, wanting me to treat them,” Kane says. “They tell me there’s a long wait list. They tell me, there’s no providers. I get calls every month.”

A shortage Zboril attributes to a lack of education surrounding women’s reproductive health in Eastern Canada and beyond.

“Nova Scotia is not known for a sophisticated health-care system,” she says. “The province consistently ranks among the lowest when it comes to health-care performance.”

Something Sears has experienced first-hand.

“Your conditions and your symptoms and everything you’re experiencing are treated as if ‘Oh, this is just an inconvenience for you’ and not something to be taken seriously,” Sears says.

“A lot of us with PCOS, first of all, we have to our own advocates, and we have be our own researchers in this because they are not going to help us.”