unprecedented. Unused. Women's fight for PCOS diagnosis, and no one heard

This is the first article in a global news series called Unheard. Unused. Maritime women's health in a crisis.

The first story introduces a new Brunswick woman who struggled for over two years to get a PCOS diagnosis.

Brooke Sears is no stranger to making her concerns unprecedented.

For many years, she had to act as her own doctor, nurse and health advocate. This was necessary when fighting for the diagnosis of polycystic ovarian syndrome, also known as PCOS.

PCOS can exist differently between patients, but for Sears it meant reduced acne, irregular periods, hirsutism, and extreme difficulties.

“I didn't understand why I failed this,” Sears says.

“Yeah, it always felt like a failure.”

As a teenager who grew up in New Brunswick, Sears was bullied for her weight and repeatedly postponed by medical professionals.

“It's getting much worse,” Sears says. “It's a long wait for a lot of things, pushing a lot of things sideways and saying, 'Oh, I'll work on that later, talk later.' ”

As a member of Glooscap First Nation, she often felt the need to hide her interracial identity from her doctors in order to take her symptoms seriously.

“Indigenous women are not considered, especially in the health care system, but at the same time I don't want to admit that it's a bit more white presentation and a bit of a privilege,” she says. “But I strongly feel that if it had to come out, it would have probably brought problems.”

The battle begins

She would have had a faint hope until her early 20s when she was featured on a PCOS test in Nova Scotia.

But she says her experience with Obgyn in Cumberland County is far from encouraging.

“She believed I thought I was overweight and she visually tunneled about it,” Sears says. “I told her, I said, Doctor, I eat 800 calories a day, I do intense cardio for an hour a day, five days a week, and I might lose one pound a week at most.”

However, Sears says her doctors were not sure.

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

With that appointment, Sears was also notified that he had lost the blood panel results needed to show hormonal imbalances that are important for the diagnosis of PCOS.

When she offered to redo the test, she was told that the hospital would cost too much money.

“I've basically been rejected as not important enough to consider these things,” Sears explains.

Sears says she was handed a recipe for low-carb bread and sent along the way.

“I was devastated and shocked. I didn't know how to respond, Sears recalls.

But experts say that when women tell their healthcare providers that they are trying to lose weight and that nothing is working, they really need to hear.

“Many of these PCOS patients… without treatment, they end up in type 2 diabetes. All kinds of issues, such as fatty liver disease, that's what happens,” warns Julie Kane, nurse and owner of Bird Island Wellness in Newfoundland.

“This isn't just a diet or just exercise. Many 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 produced in our ovaries,” says Kane. “It's our reproductive hormone. Progesterone is also our pleasant hormone, sleep hormone, which is extremely beneficial.”

Low progesterone levels in women are normalized by the health care system. However, Kane says low hormones can lead to mood imbalances and fertility issues commonly associated with PCOS.

“So progesterone is actually taken at night and prescribed as a capsule,” Kane says. “There are different doses regarding treatment. I start patients at low doses and titrate according to how they feel.”

Kane says she saw patients feel better within a few days, but many healthcare providers don't know that progesterone is an option.

“The progesterone I prescribe is biological, meaning that taking it increases your levels,” explains Kane. “Your progesterone levels actually increase in your lab work. With birth control and IUDS, I don't see any change. So you're not really getting the benefits.”

Despite doctors prescribing them as a “catch-all” treatment for a variety of conditions that involve reproductive health in women, Kane says birth control methods do not directly address the underlying cause due to their synthetic nature.

Something, Tanya Zboril, a nurse practitioner who owns TBT clinic locations in Ontario and Nova Scotia, hopes healthcare workers are on guard.

“They are commonly prescribed because they are effective in halting the reproductive cycle and improving symptoms. For example, they remove the amount of free testosterone that can circulate in the body. Zboril explains.

“However, they are not always well tolerated and there is a risk of blood clots. This can lead to heart attacks and strokes.”

PCOS is not just a hormone state, it is also a metabolic state. Therefore, patient difficulties are reduced by gaining weight.

“It's similar to diabetes in that there are variations in a person's blood sugar levels, which is very difficult to diagnose in a lab,” explains Kane.

Contraception is not effective when it comes to metabolic treatments of PCOS.

Zboril says a comprehensive approach is needed.

“Metformin, a diabetes-related drug therapy, is currently considered an insulin sensitizer and gold standard, but the results are not always consistent. Therefore, we can also consider using GLP (-1S).”

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

Zboril also says that it also has a diuretic called spironolactone, which helps block some of its free testosterone, and is known to be an effective treatment to reduce inflammation.

“And most importantly – there's evidence to support the fact that PCOS could be an autoimmune issue, so natural thyroid medications should be administered,” Zboril says.

“There are many women who have PCOS, which also has Hashimoto (illness), an autoimmune thyroid disorder.”

Both Zboril and Kane say that PCOS doesn't have the perfect solution for all sizes. This means that practitioners need to have a deeper understanding of the patient's symptoms in order to properly treat them.

Unrefined health care system

Two years after being appointed at Cumberland County Regional Hospital, Sears' family practitioners officially diagnosed her with PCOS.

However, she says that the maritime doctor's over-illness to her weight contributed to a disability eating habit that is difficult to shake.

Zboril said the researchers estimate that women have PCOS. However, the number can be much higher as many women have not been diagnosed.

According to findings published at the National Library of Medicine, patients with PCOS are also 3-6 times more likely to develop an eating disorder when concerns are dismissed.

“Emergency medicine had a philosophy of assuming that a woman was pregnant until it proved not,” says Zboril. “And there are statistics that find that about 6% or more of the women who present to the emergency department for any problem are pregnant and don't recognize it.

“Average 10% of women in North America have PCOS. Therefore, in primary care, it should be assumed that all women have PCOS.

Due to the challenges being diagnosed, many PCOS patients look outside the maritime to care for them.

“I want them to take patients from New Brunswick and Nova Scotia and treat them,” Kane says. “They say I have a long wait list. They tell me, I don't have a provider. I call every month.”

The shortage of zboril is attributed to a lack of education surrounding reproductive health for women in eastern Canada and beyond.

“Nova Scotia is not known for its sophisticated health care system,” she says. “The state has consistently ranked one of the lowest when it comes to healthcare performance.”

This is something Sears experienced firsthand.

“Your condition, your symptoms, and everything you're going through is treated as if it's something you'd take seriously, 'Oh, this is just inconvenient for you',” Sears says.

“Many of us who have PCOS are needed first of all to our own supporters. We are our own researchers in this because they don't help us.”