PCOS Isn’t One Size Fits All. Three Unique Women. Three Unique Stories.

Posted by Rachel Bond, CEO and Founder of Jubel Health

I didn’t truly appreciate the impact of PCOS (Polycystic Ovary Syndrome) until I started to dig deeper into conversations with friends about their pain and struggles over the past month during PCOS awareness month.

PCOS is one of the most common endocrine disorders among women of reproductive age, says the World Health Organization. Women with PCOS have a hormonal imbalance and metabolism problems that impact their overall health and appearance.

Before I started Jubel Health to help people along their quest to build and form a family with personalized support and guidance, I naively thought PCOS was something that only impacted a small number of women. Turns out, I had a lot to learn. According to Women’s Health.gov, PCOS impacts about 1 in 10 women of childbearing age.

For relativity, about 1 in 13 people have asthma. I don’t mean to single out the asthma community, but my point is everyone knows about asthma and there’s north of $10 billion dollars invested into the market of asthma prevention, treatment, and management of this disease while less than half of that for PCOS.

In a recent study published by the Endocrine Society, scientists concluded that PCOS research is underfunded when compared to other disorders such as rheumatoid arthritis that have a similar degree of medical consequences. For example, the total mean 10-year funding was $215.12 million for PCOS versus $454.39 million for rheumatoid arthritis.

For those who haven’t heard of PCOS, the most common issue is “period problems.” You may be thinking as a woman, “don’t we all have period problems?” Sure, but this is a different scale. We are talking about perhaps not having a period at all.

PCOS is one of the disorders that is a treatable cause of infertility. It’s complex and presents differently in different people and there’s no single test for it.

PCOS is characterized by infrequent, irregular or prolonged menstrual cycles. Some women have elevated levels of male hormone that may result in things like excess facial and body hair and occasionally severe acne and male-pattern baldness. On an ultrasound exam, your ovaries might be enlarged and contain more follicles that hold the eggs than is normal for most people. As a result, the ovaries might fail to function regularly. A diagnosis of PCOS is made if you have two or more of these factors.

There’s currently no cure for it, but symptoms can be managed and ovulation can be achieved with lifestyle changes and medication.

Of course, with my role at Jubel Health, I follow anything and everything on social media related to reproductive health — from doctors to patients — and I see some PCOS posts (especially this month), but overall — it’s not enough! Most friends from 20s to 40s that I talk to don’t know what PCOS is.

I’m perplexed. If PCOS is so “common,” then why isn’t everyone talking about it? Why aren’t there more well-known places for “cysters” with solutions available? (For those who haven’t heard that term, “cysters” is a term coined by people with who have started to form and participate in supportive communities.)

Why aren’t there more people, investors and companies solving the prevention, treatment and management problems associated with this disease to make life easier for the people who struggle with this?

The topic is “taboo” still and not talked about openly. Fortunately, a few friends know I work in the reproductive health space and I’m honored that they shared their stories with us to share with you reading this.

By age 16, Whitney still hadn’t gotten her period. Because she was an active teenager who ran track and played soccer year-round, doctors believed her missing period may have been due to exercise-induced amenorrhea. She was put on birth control pills, but she wasn’t given many answers or even evaluated for other health problems.

“My doctor gave me birth control pills and proceeded to tell me about STD’s and the chances of still getting pregnant. I was there for a missing period, not contraception. Not once did she ask me about symptoms or give me any information about why this might be happening.” Whitney said.

Whitney wasn’t diagnosed with Polycystic Ovary Syndrome (PCOS) until she was 25 years-old — nearly a decade after she began experiencing symptoms — and working as a nurse at a fertility clinic.

Whitney’s story is a common one among women with PCOS. She didn’t know she had it until connecting the dots of her experiences to others’ in her clinic for fertility treatment.

PCOS is a leading cause of infertility and can put people at risk of health issues like diabetes, heart disease, and high blood pressure. There’s no cure for PCOS, but symptoms may be managed.

These symptoms can be daunting, as Hannah, 28, another woman with PCOS, details. “At my appointment, I wasn’t sure what to expect. I learned soon enough all the negative symptoms of a PCOS diagnosis and what felt like a death sentence. The doctor mentioned cancer, heart problems, weight gain, excess facial hair and acne. So, I thought, ’Great. ‘Should I just plan my funeral?’ How insensitive to treat anyone that way, let alone a 19-year-old university student.”

Hannah shared that if her family had been more educated on PCOS and endometriosis (which she also had and we’ll save for the topic of another article), and had her doctors known to ask the right questions earlier in her pubescent years, then “I may have understood that none of my experience was ‘normal.’ It was my ‘normal,’ but honestly I just want to help prevent anyone else having family and doctors skimming over complaints of pain and going through several issues like I had to.”

Due to general lack of awareness and complexity in symptom expression, PCOS is undiagnosed in nearly 50% of women who have it. This leads to some women feeling confused and often helpless.

“It’s sad and scary to feel like an outsider in your own body. To not know what’s happening inside, and why your body is doing things or not doing things you want it to,” Angie, 24, another PCOS “cyster” describes. “For me, my PCOS diagnosis helped me understand that I may have insulin sensitivity associated with my PCOS, which could help explain why my body does not react well to certain foods, why I gain and retain weight, and why I may feel fatigued often, among other issues. Additionally, my PCOS diagnosis helped me better understand my mental health and body image struggles.”

It’s possible for women with PCOS to get pregnant and manage other symptoms, but the first step is knowledge and acceptance. Take it from our PCOS “cysters”.

“Now that I have more awareness of my body, I’m able to take the steps I need to become healthier without just relying on birth control pills to make the problem go away,” Whitney, 34, said. “After having my daughter through in vitro fertilization (IVF), I started to have normal cycles for the first time in my life. I was diligent about taking care of myself and was able to conceive after just four months of trying without intervention. I know this isn’t always typical, but I believe given the right tools and information, many people can begin making healthier choices earlier in life that support their fertility and menstrual cycles,” says Whitney.

“I’ve started to attempt to manage my symptoms, but it isn’t easy. However, I know my PCOS is not my fault, and I hope you know, it’s not your fault either,” Angie says.

So, as we wrap up PCOS Awareness Month, I just wanted to say that knowledge is power and awareness about PCOS is key to making an impact. We need to destigmatize the topic to foster that awareness so that people can recognize the symptoms earlier.

We at Jubel Heath, including our fertility coaches and our “cysters,” understand the need for support in all aspects (i.e., mental health, nutrition advice, navigating the medical world, etc.) and can provide you with support, community and connect you to helpful resources that make an impact.