“The Invisible Disease”: Life with PCOS

Jess Tucci was 17-years-old when she was first diagnosed with polycystic ovarian syndrome, commonly known as PCOS. 

The years leading up to Jess’ diagnosis were racked with confusion, biannual periods and dismissive doctors. Despite her best attempts at candour with medical professionals– describing her unusual, irregular periods and severe side effects– she’d been assured, as many women who suffer from PCOS and other uterine disorders have, that her periods would become regular in her 20s. Her family doctor told her it was ‘normal’ for women to experience extremely long, painful and irregular periods in their youth.

For Jess and millions of other women who have been diagnosed with PCOS, this determination didn’t sit right. 

One in ten women globally experience PCOS, according to the Office on Women’s Health review in 2016. However, in a 2018 study done by the U.S. National Institute of Health, researchers found that over 75 per cent of women with symptoms of PCOS remain undiagnosed, largely due to a lack of knowledge on behalf of the provider. 

Jess got her first period when she was ten-years-old. When she was fifteen, she asked her doctor if it was normal that her period only came twice a year. He told her not to worry. 

“Once I didn't need to see a paediatrician anymore,” Jess recalls, “I switched over to my mom's doctor. Literally, the first appointment I ever had with her I was like, ‘hey, so, you know, this has always been an issue for me but my doctor said it was nothing, so I'm sure it's nothing,’ and she basically said, ‘no, I don’t think it’s nothing.’”

“She's like, ‘I think you might have PCOS.’”

via GIPHY

Thus began a series of tests. The first step in diagnosing PCOS is to do a pelvic ultrasound to produce an image of the ovaries. Priyathama Vellanki MD on Endocrineweb says that doctors should look for 25 or more cysts and enlarged ovaries in the ultrasound. 

The second common test is bloodwork to measure hormone levels. Typically, higher levels of androgens –male hormones– are found in women diagnosed with PCOS. This can cause ‘male-pattern’ hair growth (think hair on the face), severe acne and weight gain. 

Jess says that the physical, or as she calls them, ‘aesthetic’ problems have been the root cause of poor body image and low self-esteem. 

“The big factor for me is the weight issue,” she says. “Your hormones are so out of whack. It's really hard for people [with PCOS] to lose weight or maintain weight, even if you're doing all the ‘right things’.”

PCOS can cause insulin resistance, similar to type-2 diabetes. This means that the body produces insulin, but can’t use it effectively. Insulin helps the glucose (sugar) in your blood enter the cells in your muscles, fat and liver. Insulin resistance prevents this process, and as a result, your body overproduces insulin and may result in excessive fat stored in the liver and pancreas.

Jess has been seeing a naturopath for the past few years to manage the symptoms of her PCOS, although many women choose to go on Metformin, a medication developed to combat type-2 diabetes. When Jess was diagnosed, she was worried about the long-lasting side effects of Metformin. 

But now, Jess is in her 20s and no longer receives provincial healthcare benefits that encompass naturopathic supplements. Until she can get a full-time job with benefits, she’s made the decision to switch from the naturopathic route to Metformin. 

Another common side effect of PCOS is infertility. According to the National Institute of Health, the prevalence of infertility in women with PCOS ranges from 70 to 80 per cent. Many women aren’t even diagnosed with PCOS until they start trying to conceive.

“I’m someone who's always wanted to like, be a mom and have kids one day,” says Jess. 

“Mentally, you kind of get to a place of like: ‘why doesn't my body function how a woman’s is supposed to function? Why am I different?’ You can really get down on yourself about it.”

Although, it is important to note that this statistic isn’t a death sentence for women who hope to have children. Aleksandra Rybak, a library technician and mother of two, was diagnosed with PCOS in her early 20s. She and her husband understood that their route to pregnancy wouldn’t necessarily be linear, so they started trying right away when Aleksandra was 27.

“In Canada,” Aleksandra says, “they won’t test you for infertility until you’ve been unsuccessful for a year. And then what if, you know, it takes years to get pregnant or adopt? Most women start having families in their 30s and then your chances just decrease from there.”

Despite her diagnosis, Aleksandra got pregnant on their first try. A second pregnancy followed two years later. 

After her second child, Aleksandra decided she wanted to pursue a more permanent solution for her PCOS symptoms. Unlike Jess, who doesn’t report extremely painful periods, Aleksandra says that her period cramps were often debilitating. Two years ago, she bled regularly, even when she wasn’t ‘on’ her period. When she got it checked out, her doctor found a benign growth in her uterus, along with cysts and polyps. 

She considered getting a hysterectomy, a procedure to remove the uterus. Her doctor told her she’d be hard-pressed to find a surgeon who would “remove the uterus of a fertile 30-year-old,” so she decided to have an ablation– a procedure to remove the lining of the uterus. Over time, this lining can grow back and potentially restore ovulation.

“The surgery is the thing that really saved me,” says Aleksandra. “Before it was like, I never knew when my period would hit, and I wouldn’t be able to plan stuff around it. One time we were on a trip to Spain, and I basically had to sit in a hotel room and cry. It’s debilitating. You can’t do anything. Your day is basically done.”

Jess and Aleksandra’s experiences are success stories when it comes to life with PCOS. For starters, they were both actually diagnosed because of their persistence with medical professionals. For many women, however, this isn’t the case. There is a disconnect between women’s health and the scope of diagnoses, particularly by male doctors. This is partially due to archaic misconceptions about women’s health and a lack of due diligence when women report symptoms.

I asked both women what advice they would give to young women who have, or who may think that they have a uterine disorder–and they agreed, more education on the topic is absolutely necessary to improve the percentage of women who go undiagnosed (and thus, don’t have access to or knowledge about potential treatment.)

“I just want [women with PCOS] to know that they can advocate for themselves,” says Aleksandra. “Get second opinions. If someone tells you no, go find someone else.”

Jess hopes that there will be more education in schools surrounding women’s health. “This sounds lame,” she prefaces, “but I just want people to know about it. That way, if you’re having symptoms, if you’re dealing with these issues, maybe you can get an actual diagnosis.”