Polycystic ovary syndrome (PCOS) often runs in families, with up to 70 percent of the daughters of women with PCOS also developing it. This is the story of a mother with PCOS who ended up having three children with the same condition - and how they handled it.
In this article:
The Connection Between PCOS & Genetics
Is PCOS a heritable condition? While there are no conclusive answers as of yet, evidence is mounting to support a hereditary connection with PCOS, and it appears to be a strong one.
According to this 2019 study, PCOS is an extremely heterogenetic and complex disease. As its researchers noted, "the genetic basis of PCOS is different between families and within families but is related to a common pathway." The potential genetic basis of PCOS was first reported by researchers in 1968.
Although our understanding of inheritance of PCOS is limited, recent studies suggest that PCOS may run in families, and that female, as well as male relatives, have an increased risk of insulin resistance and type 2 diabetes, as well as reproductive and psychiatric disorders.
Swedish researcher Elisabet Stener-Victorin goes on to explain: "While up to 70 percent of daughters of women with PCOS also develop it, genetic variation doesn’t fully explain the high incidence within families. Some genome-wide association studies of PCOS susceptibility reckon genetics explains less than 10 percent of the condition’s heritability. That has scientists suspecting that other factors, such as epigenetic mechanisms, might play a role in passing the condition on to future generations."
In short, there is increasingly strong evidence to suggest that PCOS has at least some genetic factors. In my own family, we have certainly seen this to be true.
5 Facts You Should Know About PCOS
Polycystic ovary syndrome (PCOS) is an often misunderstood condition that is far more common than you might expect. Many celebrities and public figures have even spoken out about their personal experiences with PCOS in an effort to raise awareness.
1. PCOS Affects 1 in 10
PCOS is one of the most common human disorders. It is the leading cause of infertility and the most common endocrine disorder in younger women. It is a complex hormonal, metabolic and reproductive disorder that affects 1 in 10 women of reproductive age.
2. PCOS Increases Your Risk Factors
Women with PCOS constitute the largest group at risk for developing cardiovascular disease and type 2 diabetes. The Centers for Disease Control and Prevention estimate 50% of people with PCOS will become diabetic or prediabetic by age 40.
Some studies have also shown women with PCOS to be at three times higher risk for endometrial cancer, two times higher risk for ovarian cancer, and two to four times higher risk for breast cancer.
3. PCOS Can Affect Your Mental Health
Research has shown that anxiety and depression are more prevalent in those with PCOS. Due to these persistent mental health struggles, suicide attempts are up to seven times more common in people with PCOS.
4. PCOS Impacts All Ages
PCOS doesn't just affect those of reproductive age, it can also affect pre-teens and teens. Earlier diagnosis can provide the opportunity to better manage the emotional, internal and physical effects of the condition. It can also help prevent the onset of more serious illnesses related to PCOS.
5. PCOS Often Goes Undiagnosed
Despite affecting millions of women and causing serious health consequences, PCOS is unknown to most people. A staggering 50% of women living with PCOS are going undiagnosed.
My Own PCOS Story
PCOS and I have always had a curious relationship. Unlike many patients who discover they have PCOS while trying to build their family, I wasn't actually diagnosed with the condition when I experienced infertility at age 26.
I had always had unreliable and irregular menstrual cycles. Zero acne. Some hair growth issues. But 35 years ago, not as much was known about Stein Leventhal, now known as polycystic ovary syndrome (PCOS).
Neither title accurately captures the many ways in which PCOS affects people. It is a condition that is metabolic, systemic, hormonal, and multi-system. Official criteria for what constitutes PCOS was established in 2003 (known as the Rotterdam criteria), but as research progresses, there is a continuing debate about expanding the existing diagnostic guidelines.
Uncovering PCOS During Menopause
I was never diagnosed with PCOS, not even by any of the top fertility practices in New York City. The closest I got to a diagnosis was that I had PCOS-like symptoms.
And I was one of the lucky ones. Despite not having an official PCOS diagnosis, and after more than six years of fertility treatment, I was able to build my family and have three children. Little did I know that was just the beginning of my relationship with the condition.
Flash forward to menopause. I turned 50 and there it was - the end of perimenopause quickly turning into full blown hot flashes, memory glitches, and irritability through the roof.
Because that wasn’t challenging enough, this was also when my PCOS bloomed. For me, menopause brought on many symptoms that I had never experienced before, including weight gain that went far beyond what is expected during menopause.
My usual health-conscious way of eating and exercising didn’t prevent me from gaining almost 30 pounds in less than six months. My cravings were out of this atmosphere, and despite increasing my exercise and maintaining healthy eating, the weight just kept coming on.
But it wasn’t just the weight, it was all of the feelings. The self doubt that was new to me. The lack of self confidence when I usually felt strong. The feelings of exhaustion that made no sense. Hello to the PCOS bloom, late as it was for me.
Finding Support for PCOS
Thankfully, because of my work in the fertility and advocacy world, I knew how to and where to get help. I was one of the lucky ones in that way. After a few false starts, I finally found a great medical endocrinologist who understands and treats PCOS. Not all medical endocrinologists do, so be careful!
But it has been difficult to manage my PCOS. Given how many health-related problems it is linked to, it’s been hard to discern what to attribute to the condition, what could be my own idiosyncrasies, and what might a different health issue altogether.
To manage my PCOS symptoms, I've utilized a combination of medications, exercise, dietary adjustments and meal planning, sleep scheduling, mental health support, and de-stressing practices (like yoga and meditation).
You're not alone: If you want to talk to someone who understands PCOS and can empathize with what you're going through on a personal level, you are welcome to call me at 203-354-1157.
Miya's Story: Advocating for Better Care
Miya is one of my daughters. At age 23, Miya began to fiercely advocate for herself. She wouldn't accept the answers that she was getting about her symptoms - not from doctors, not from insurance companies, not even from her own mother.
There was something wrong and she knew she needed more than what was being offered - so she fought for herself. The result? She has now carved out a path that others who are covered by her insurer will use next time when presented with someone who has PCOS.
Miya is the future of PCOS. And she is not alone in this fight.
In Her Own Words
Miya has courageously chosen to talk about her journey publicly to help others feel less alone. She believes in being as open as possible about her PCOS to help normalize having it, and to serve as a listening ear to others who need support.
Here are some of the updates she has shared:
"I was diagnosed in March & my life has changed a lot since then. I take medication 3x a day & probably will be for the majority of my life. I have gotten my insulin & glucose levels to a point where I don’t have to worry anymore about becoming prediabetic. All my other levels that were so out of whack for a 21 year old are now in range of normal.
I don’t have a need to eat almost constantly throughout the day & night & I’ve lost almost 20 pounds. I’ve gotten to share my experience with so many & I’m so grateful for all the support. I’ve learned not to give up & I’ve gained some solid self confidence. Sending love to anyone struggling with any invisible illness, keep looking up."
"Today I had my one year checkup from when I was diagnosed with PCOS.
Yes, I’ve lost weight and I know that is what a lot of people will choose to focus on but that’s not what I see. I look at the person in the "before" picture and see someone not comfortable in their own skin who is very unhappy. I look at the "after" picture and see someone who is happy and content. That’s what it comes down to.
Yes, I’m happy I’ve gotten some of the physical symptoms of PCOS under control, but that’s really only secondary to the mental changes I’ve experienced since finally being able to understand why I have some of the problems I have. I have polycystic ovary syndrome and I won’t give up."
How PCOS Affects Our Family
Miya is just one of my three offspring (rather than children, which they are not, or daughters, which is too binary) who are challenged by second generation PCOS. The other two have variations of PCOS-related health issues - rheumatoid arthritis, fatty liver, mental health challenges, weight fluctuations, insulin resistance, and more.
Nothing about PCOS is easy. Except for the knowledge that you're not alone. We are grateful to have each other, and a community and society that is recognizing PCOS more.
So, is PCOS hereditary?
Well, in my family, we knocked that 70% statistic right out of the park. Try 100% instead.
My daughters are among the people in my life I am most grateful for. Imagine my hypervigilance as they matured, worrying whether they would also be affected by PCOS.
I’m likely not the only mother who rejoiced when her daughters got their periods and their cycles were regular. I rejoiced and exhaled a very premature sigh of relief. Little did I know, PCOS was about to hit our family like a runaway truck.
One of the most challenging things about PCOS is that it expresses itself in so many different ways: insulin resistance, high A1C, irregular cycles, fatigue, acne, hirsutism (hair growth), early onset diabetes, fatty liver disease, mental health issues, infertility, sudden and unexplained weight gain, high cholesterol levels, heart disease, high androgen counts, ovaries with high follicle counts (note: they're not actually cysts), and male pattern baldness or hair thinning.
The Emotional Impact of Passing It On
While PCOS hit me hard at an already difficult time in my life, I felt capable and able to take it on - thankfully with a lot of help and support. But I was floored that my daughters were also facing PCOS and its not-so-merry bag of pranksters. That was the hardest hit of all, that I had inadvertently passed on a syndrome that was causing chaos in my own life.
On my bad days, I sometimes wonder if PCOS is to blame for every single health challenge that I or my daughters face. As mothers with PCOS who then have to navigate it with our own children, we know there will be more challenges to come.
We also know that sinking into a pit of guilt will be pointless.
That doesn’t mean the guilt isn't there.
It’s tough to acknowledge these emotions and keep returning the focus to my daughters, who need and deserve my help. But that’s my job. And whether we’re mothers or not, it’s our job to keep fighting for more research, new treatment, and ultimately, a cure for PCOS.
That’s the antidote to guilt - to keep moving forward, being productive and helpful for every single person who finds themselves affected by this challenging condition.
Want to learn more? Check out this conversation with PCOS advocate and mother Ashley Levinson about how the condition has expressed itself in our families.
How can we support those with PCOS?
It starts with awareness, and challenging ourselves to confront our own biases, especially around weight. How many times have I seen that sideways glance when someone is selecting food at a buffet? Or heard the unhelpful suggestion, "Maybe try eating less and exercising more!"
Dropping the judgment and leaning into care for those who are struggling is the kindest and most helpful thing you can do, whether it’s about weight, which is highly visible, or mental health issues, which is sometimes almost invisible.
PCOS: An Unwanted Inheritance
Because we're all struggling with PCOS in our family, we have to to pay attention - both those of us who are directly affected by it and those who are in relationship with us. To the other families, close friends, and colleagues of those with PCOS, please understand that this is a chronic, serious condition that deserves compassion and understanding.
Those struggling with PCOS deserve support. We deserve increased funding for research, better educated clinicians who are equipped to treat the condition more appropriately, and increased awareness of serious health implications beyond infertility and pregnancy.
In our family, we see that PCOS is being passed down, an unwanted inheritance, and we want to see advancements so that the next generation in our family is healthier and stronger.
That’s our fight. Our mission.
With 30+ years experience in the fertility field, as well as navigating her own infertility, Lisa has dedicated her life to advocating for and supporting those struggling to grow their families. Her work includes serving as Illume Fertility's Patient Advocate, Strategic Content Lead, and founder of Fertile Yoga, as well as advocating for those with infertility at RESOLVE and other organizations.