PCOS is not just a fertility issue, and that’s why we’re redefining the patient experience at Pollie
For the past year my co-founder Sabrina and I have been building Pollie. Our vision is to be the telehealth solution for managing complex chronic conditions for people that menstruate, and we’re starting with polycystic ovarian syndrome (PCOS).
If you are new to the world of complex chronic conditions such as hormone, autoimmune, and digestive disorders — which impact an estimated 30% of people that menstruate — the need for a solution like Pollie may warrant an eyebrow raise. As I’ve written about before, many believe that women’s health startups will converge into a single player. In our opinion these folks are missing out on a major opportunity to look deeper at the categories within women’s health, most of which are underserved, stigmatized, and in need of transformation.
We have chosen PCOS as our first condition for a variety of reasons: it impacts over 7 million people in the United States yet nearly 90% of patients are not satisfied with status quo treatment options, it costs individuals and our healthcare system billions of dollars annually, and it is a manageable condition that is responsive to lifestyle changes such as diet modification in addition to pharmaceutical treatment.
Another key reason for our decision to start with PCOS is a bit more personal: I have it!
So, eyebrow-raisers, if you are wondering why Pollie. Buckle in: I love talking, and I love talking about hormones most.
As a freshman in college I was diagnosed with PCOS, a chronic hormone imbalance that impacts 10% of people that menstruate.
Right before my freshman year of college I started experiencing bad acne, hair loss, anxiety, and insomnia. I had never noticed any of these symptoms before, sans normal teenage breakouts or situational stress. After several months of attempting to brush it off as being in a transitional phase of life, my (sometimes overbearing but always wonderful) mother had enough and got involved.
I was in an incredibly privileged position in the sense that my parents were paying for my healthcare and schooling. What’s more, my mom, who had been a nurse, had the time and wherewithal to research my symptoms and make appointments at different doctors. Without her, I almost certainly would have cycled through medication until I (hopefully) found something that improved my symptoms — without doing blood work to check for an underlying issue. Reality #1 of PCOS: if you are not yet trying to have children, getting the proper labs for a diagnosis can be an uphill battle.
Despite my mother’s support, it still took almost a year to receive a diagnosis — which was still over 2 years faster than the average diagnosis time according to a Pollie survey — and then another year to learn how to truly manage my symptoms.
Today, PCOS does not have a massive impact on my life. In fact, with lifestyle changes I have been able to take myself off of the PCOS “spectrum” by no longer fulfilling the diagnosis criteria: my androgen levels have been in normal ranges for years and I ovulate regularly. That said, this does not mean I am rid of PCOS forever, and I will need to continue to pay close attention to how my hormones change as I age and my body and life evolve.
PCOS is a complex condition: it is primarily a hormone imbalance, but for many it is also influenced by metabolic, inflammatory, genetic, and autoimmune factors.
Before diving into the complexity of PCOS, it will be helpful to understand what it is actually defined as. To qualify for a diagnosis, one must fulfill 2 of 3 of the Rotterdam criteria:
- Hyperandrogenism: High levels of male hormones called “androgens” such as testosterone, DHEA, DHEA-S, and more. This is identified with simple bloodwork.
- Anovulatory cycles: Absent or irregular ovulation and subsequent absent or irregular menstrual cycles. This is patient-reported.
- Polycystic ovaries: Notably distinct from an ovarian cyst, “polycystic” is a misnomer in that it refers to people with PCOS having ovaries with a higher-than-normal number of follicles surrounding their ovaries. This is identified with an internal ultrasound.
Due to its diagnostic criteria, PCOS is primarily defined as a hormone imbalance.
When I am explaining PCOS to people who have never heard of it before, I like to say that it happens to people whose ovaries and other endocrine glands are not communicating with one another properly. For a variety of reasons, the bodies of people with PCOS are just a bit sensitive and confused.
Having high androgen levels, which is very characteristic of PCOS, makes it more difficult to ovulate and subsequently more difficult to get pregnant. Reality #2 of PCOS: It is the leading cause of infertility, which has historically been the impetus behind formal diagnoses and awareness.
But high androgens lead to symptoms beyond infertility: hair loss, adult acne, hirsutism (male-pattern hair growth), and weight gain are all common symptoms seen with PCOS that are driven by hyperandrogenism. While these symptoms do not incur the same costs as infertility treatment, they can take a toll on one’s confidence, mental health, and quality of life.
And further complications develop from high androgens and irregular ovulation. Over time, missed cycles can throw other hormones like estrogen and progesterone out of whack, thus catalyzing issues such as anxiety, depression, fatigue, additional weight gain, other chronic conditions, and more.
But PCOS is not just a reproductive hormone issue: for a majority of cases, it is also a metabolic condition.
Depending on what triggers one’s specific case of PCOS, it can also fall into the category of a metabolic condition: an estimated 70% of PCOS cases are accompanied by insulin resistance.
Insulin is a hormone secreted by our pancreas. Its job is to convert glucose, or blood sugar, into energy for our muscles to use. If someone is insulin resistant, their body does not do this conversion as efficiently as other bodies. This means that our pancreas must produce higher amounts of insulin relative to our blood glucose. Over time, this can exhaust our pancreas and lead to chronically-high blood sugar, which in turn can lead to prediabetes, diabetes, and weight instability.
And for some, it can be an autoimmune or genetic problem.
While a majority of people with PCOS struggle with metabolic issues as well, PCOS has also been linked to autoimmune and genetic issues:
- Research that suggests PCOS may be an autoimmune response for some people and there is a clear link to increased risk of autoimmune thyroid disorders.
- While some people develop PCOS from lifestyle and environmental factors, evidence shows it can also be inherited. In fact, a 2021 study suggests there exists a genetically-defined male counterpart.
This common condition is taking a toll on our healthcare system and incumbents have not risen to the occasion.
PCOS is known largely as a fertility disorder, but it is much more than this. Take the below stats on long-term PCOS health risks:
- 50% chance risk of developing diabetes by the age of 40
- 4x — 7x higher risk of heart disease
- 3x higher risk of developing endometrial and other estrogen-related cancers
- 3x higher risk of developing a mental health condition like anxiety or depression
In other words, PCOS is the root cause of a lot of healthcare spend. Pollie’s analysis indicates that people spend over $2k annually to manage their symptoms, and when you start to layer in spend for complications like heart disease and cancer that number quickly balloons. Reality #3 of PCOS: It is not just a reproductive problem, but a whole-body chronic condition that increases risk for serious health issues.
And yet our healthcare system still largely treats PCOS as solely a fertility issue. Diagnosis is quicker for those who are actively trying to start a family, as many OBGYNs and primary care physicians will usually prescribe birth control to manage symptoms over doing lab work if a patient is not trying to conceive. As mentioned, this is something I experienced firsthand: since I was very far from thinking about family planning at the time my symptoms popped up, all of my initial doctor appointments were focused on different hormonal contraceptive options* rather than educating myself about what was actually happening inside my body.
Beyond the costly nature of PCOS, it also has an abysmal patient experience. In an anonymized survey of 95 participants, we learned that only 11% of people are satisfied with conventional healthcare resources for managing their PCOS. This is driven largely by the fact that our conventional healthcare system does not include any holistic PCOS specialists. As a patient, one must bounce from their primary care physician to OBGYN to endocrinologist. It’s exhausting, inefficient, and a great way for important information to slip through the cracks.
While PCOS is a lifelong chronic condition for many, it can be managed and even reversed. But most patients are not empowered with this knowledge.
While much is unknown about PCOS, one common understanding is that it is a spectrum disorder. There are more mild cases and more severe cases. And in both instances, symptoms can be managed.
I am someone who falls into the more mild camp. My symptoms were at their worst when I was on a combination hormonal contraceptive (i.e., a pill that contained the synthetic hormone progestin as well as low doses of estrogen) in college. The particular pill I was on is known to increase androgens for some people (this is called “post-pill PCOS”), and I was likely one of them*.
While my symptoms improved in time once I went off of this pill, some lifestyle changes were still needed to get my labs within their “normal” ranges. For me, a dairy sensitivity and high stress hormones were spurring production of a specific androgen called DHEA-S. That means that even today, I must be mindful of both dairy intake and stress management. For those with insulin resistant PCOS, being mindful of carbohydrate intake can be more important. Reality #4 of PCOS: Dietary and other lifestyle-related changes can lessen severity of PCOS symptoms and even reverse the condition, but there is no one-size-fits-all approach.
People with more severe cases of PCOS may never be able to fully leave the diagnosis criteria, but they can still manage their symptoms and reduce long-term health risks with lifestyle changes, pharmaceuticals, or a mix of the two.
But conventional healthcare resources are not empowering patients nor meeting their needs when it comes to PCOS management. In an anonymized survey of over 200 participants, 72% of patients reported their physicians did not communicate the various ways they could manage their condition.
As a substitute, the PCOS population is turning to both the internet and independent specialists. There are problems with both avenues:
- Self-education with the internet: Dr. Google, Instagram, TikTok, Quora, and Reddit are all bustling centers for PCOS information and community support. While patient education is an accelerator for more effective advocacy, there is an obvious misinformation issue, and making uninformed changes without supervision of a medical practitioner can be dangerous. Secondly, no patient experience should require that said patient become an expert in their condition for proper care. And yet this is exactly what is happening with PCOS.
- Independent specialists: The past few years have seen an explosion of PCOS and other hormone health specialists such as naturopathic doctors, functional nutritionists, health coaches, and more. While working with a specialist 1–1 can be tremendously helpful, most of these providers do not accept traditional reimbursement. This makes this option inaccessible for most audiences.
Seeking out substitutes is a privilege from both time and financial means. And this shines through in research: due to systemic issues PCOS incidence and severity is higher for minorities (e.g., Hispanic populations are 2x more likely to have PCOS than other racial groups) and those in lower socioeconomic groups. Reality #5 of PCOS: Significant levels of self-advocacy — and in many cases racial and socioeconomic privilege — are needed for people to feel in control of their PCOS.
An integrative and scalable approach to PCOS is needed.
While much is unknown about PCOS, one thing is for sure: it is a whole-body chronic condition and should be treated as such.
But today’s PCOS patient experience and available treatment options are mediocre at best. We have heard the same pain points from hundreds in our community: difficult diagnosis journeys, endless bouncing around from OBGYN to endocrinologist to primary care physician, long specialist wait times, and minimal to no direction from healthcare providers when it comes to managing non fertility-related symptoms.
Something needs to change. While PCOS is certainly a complicated condition, it is not such a mystery of an illness that this fragmented and frustrating patient experience should still exist in 2021. Like other conditions such as diabetes, there is a playbook for managing symptoms that relatively simple lab work helps personalize. Unfortunately, not everyone has access to or awareness of this. That’s why we started Pollie.
With evidence-based treatment plans, holistic care teams, community support, and curated educational content, we believe we can redefine the PCOS patient experience. And the best part about doing this through a digital program? Patients can access care more conveniently and rapidly at a fraction of the cost of today’s status quo and substitutes. This ultimately allows us to reach the patients who need it most.
Because when it comes to a condition that takes a toll on the physical, mental, and emotional wellbeing of 1 in 10 people that menstruate, a broken patient journey is unacceptable.
Want to manage your PCOS with Pollie? Join our waitlist today.
*An important note: Our team at Pollie is incredibly supportive of hormonal birth control, especially for contraceptive purposes and for managing hormone imbalances. Medication is not for everyone, but for some people it makes the most sense for managing their symptoms. This is a highly personal decision that should be made between a medical professional and patient.