SINCE MY PCOS DIAGNOSIS

WHAT I’VE LEARNED SINCE MY PCOS DIAGNOSIS

I was a sophomore in High School when I had ovarian dermoid cyst removal surgery. It was hardly my first experience with painful ovarian cysts, but it was the first one that wasn’t going away on its own, and that would require the extraction of half of my left ovary. Had PCOS conversations been further along for the general public, that may have been a good time to start getting eyes on my reproductive system and paying attention to its patterns and needs. But it would be 19 years, four doctors, and several rounds of failed fertility medication later before someone would finally ask, “Have you ever been diagnosed with Polycystic Ovarian Syndrome?” 

There are many reasons why so many people with ovaries go undiagnosed for so long. Symptoms and causes vary and are normalized; symptoms can be masked by hormonal contraceptives delaying diagnosis; healthcare can be fragmented among specialists, keeping dots from connecting; stigmas can lead to markers being attributed to lifestyle; racial and ethnic disparities in healthcare exist; and research gaps persist despite PCOS affecting 8-13% of reproductive-age ovaries worldwide. The odds aren’t in a Cyster’s favor, though I do think the narrative is changing. I wanted to write about what I’ve learned since my diagnosis to hopefully add to a growing conversation. 

But first, I’ll say one of the most profound things I’ve learned and want to share is that—because of the varying causes/symptoms, because of the gaps in research/diagnoses, because every single body is a universe unto itself—PCOS input should be navigated descriptively, not prescriptively. The stories I’ve encountered and experienced are best observed and analyzed in reference to a person’s own honest-to-God life rather than accepted as the universally applicable how-to hacks. I’m describing an experience, not prescribing a path. 

TIME

Starting birth control in high school following my surgery and then remaining on it for the next decades, except for the ten months I was pregnant with our son, was likely a big contributing factor to my own delayed diagnosis. Once I removed it from my system four years after his birth to try for a second child, my symptoms burgeoned, most significantly in irregular and/or nonexistent cycles, weight gain/inability to lose, skin/hair/energy changes that made me look and feel unwell, inability to conceive, blood work that indicated both near-diabetic insulin resistance and sclerosis-level non-alcoholic fatty liver among other concerning things, and the anxiety/depression that can accompany such a reality. I was sick. I seemed to be getting sicker. 

There were two doctors who changed the trajectory of everything for me around this season. The first was a PA who became a dog with a bone regarding my bloodwork and symptoms. She had panel after panel drawn, sent me to liver specialists, and studied my hormones; she sat with me for over an hour each time, listening and taking notes. Six months into our work together, she was the first to ask if I had ever been diagnosed with PCOS. After I confirmed no, but that I’d wondered given *list of two decades of symptoms,* she said, “I want you to go see this new OBGYN who will spend the kind of time that I would spend with you and ask her to explore this.”

I sat in the waiting room of the new OB for three hours, but I hoped that this delay at her one-woman operation meant that maybe she would spend the same kind of time with me once I got into her exam room, which she did. She combed through my panels and ultrasound results, listened to my history and present struggles, and then confirmed the presumed diagnosis, making it official. “This is a chronic condition,” she said, “but one whose symptoms many people are able to eventually manage as you learn what your body’s been trying to tell you it needs.” My body had been talking, said my time-giving doctor who was now serving as its translator.

REALITY

I thought I would feel burdened by the weight of something called “chronic,” but instead, I felt free. Free to learn, free to research, free to resource myself, free to live into reality, which is to say, free to live. I began reading and listening to everything I could—books, articles, podcasts, and social pages dedicated to PCOS information. I put what was helpful and felt applicable into my toolbox; I bypassed what wasn’t. 

Here were some of the things I learned that mattered to my particular life and body: 

That insulin can be at the heart of many PCOS experiences, where our bodies, for whatever reasons, cause cells to not respond properly to it, thereby producing an excess, stimulating the production of more androgens and worsening symptoms, making weight management difficult (adding to a difficult cycle), and increasing risks for Type 2 diabetes. This is why some folks with PCOS gravitate toward carb-sensitive regimens, medications like Metformin, Semaglutide, Inositol, and Berberine, and insulin-resistance-improving tactics like fiber intake, weight training, intermittent fasting, and stress management. 

That you can maintain body- and size-positive values while acknowledging the potential health benefits of weight loss for someone with PCOS. That the perspective of appreciating and celebrating all bodies (including mine at every size) is not in contrast to understanding that many people with PCOS can significantly improve insulin sensitivity and reduce the symptoms that make them sick with just a 5-10% loss. That one way I helped these coexist in my own journey was by focusing first and primarily on the profound improvements of my blood work and my cycle. I also made peace with the idea that my attempts at intuitive eating might have been thwarted by the fact that insulin resistance disrupts natural hunger and fullness cues and that PCOS hormonal imbalances can lead to craving the very carbs/sugar that keep the body cycling in sickness. I learned that I might be a person who has to use tools and some form of guardrails for the rest of my life. Naming that helped.

That, if as a PCOS person for whom weight loss is beneficial and necessary (and it’s not for everyone), and you set out to make changes, it’s important to embrace that it will likely take double the time and double the effort than a non-PCOS body. Once I read that, I felt like I now had the rules of a game I’d been stumbling around in my whole life. I could settle into the pace, accept my dealt cards, and adjust my expectations and tactics. The biggest thing that this affected was in helping me realize why the aggressively contradicting prescribed regimens online were so confusing: I would find no perfect regimen outside of whatever one I could actually do for the long haul and which would help me get well—body, mind, soul.

That many people with PCOS have a higher baseline cortisol level and higher sensitivity to stressors which often has a direct connection to inflammation. When I first learned this, I thought, “No wonder I’ve had more than one doctor note that my shoulders and neck constantly feel like concrete.” Knowing this reality granted me permission to fiercely prioritize rest, make accommodations around stressful scenarios when possible, and vigorously explore meditation and breathing practices. 

RESOURCES

Now to *describe* some of the things that have been helpful to me. 

Medications/Supplements: For general PCOS symptoms, I take Inositol, Berberine, and fiber supplements for insulin resistance and Omega 3 (and sometimes Magnesium) for inflammation and cortisol. For fertility efforts, I have also taken baby aspirin, CoQ10, and semaglutide, along with Progesterone around conception since PCOS people tend to make less than needed. On five different occasions, I took Clomid and Letrozole for ovulation induction, though they never worked for me; once I began to get healthier, however, ovulation returned on its own (again, this is not always the case for everyone).

Movement: I started working out to move work stress out of my body before I came home and making the connection between my body and brain (maybe for the first time in my life) was a big aid in longevity. I liked the endorphins and felt their lack when I missed too many days. One huge help in kickstarting a fitness road was investing in a trainer/gym membership for a couple of months to help me learn equipment and build in some consistency/give myself permission to make it a priority. After a couple of months, I’d experimented with enough outlets to know that I felt best on the bike. And after six months of establishing a rhythm of 4-5 days a week, I felt confident in my own discipline enough to move it home. The Peloton bike has been my favorite way to exercise because of its sweet spot of convenience (I can do it while my son does his homework) and community (the classes update daily, and there are many live aspects to help the experience not feel stagnant). There’s a ride and instructor style for every mood and day—when I’m raging, I ride with Jess; when I need to laugh, I ride with Cody; when I want to feel alive, I do country pop with Ally. I experience the instructors as very body positive and mental health aware. I’ve also connected with several Peloton bikers and other endurance folks on their various journeys by sharing milestones occasionally on social media—it’s weird and vulnerable (like this blog), but it’s offered connection and encouragement. Eventually, I started adding walking 1-3 miles a day mainly for vitamin D and to move along some goals—this happens in waves since there’s not always time. I also started chasing 30min rides with 5min rides-with-weights for a more full-body experience and because there’s increasing evidence that weights are good for PCOS. When I made peace with the fact that movement could fit into the time of day that felt best to my body, things became more enjoyable, which made all the difference in wanting to do it again the next day and next month and next year. My body doesn’t like 5AM workouts. She’s an afternoon girlie, and at some point, I decided that time of day for fitness (if there’s the option to consider it) was morally neutral, and I could let myself off the hook of thinking otherwise. More than any other thing—any other thing—I saw friends sharing their day-in and day-out efforts and watched them eat their elephants one consecutive, repetitive, maddening bite at a time until one day, they woke up, and life was different. Now, I know that for me and my PCOS makeup, there’s no healing without falling a little in love with the long haul. 

Nutrition: This is the area I’ve experimented with the most, but the system I’ve leaned into more than any other—and maybe will indefinitely—is weight watchers (but on the diabetic setting, which I read many PCOS folks say, and have now experienced, is more effective for insulin resistance) and shooting to stay between 30-60 net carbs (which the WW diabetic setting helps to achieve, plus they track macros at the bottom of the app now which is a plus). I try look for protein to stay full and learned that beans are a pretty magical food for PCOS people. The seasons I took Berberine and Semaglutide, my appetite decreased; I always tracked regardless. The main thing has been…I’m repeating myself…to find the thing that I could still be doing in two years.

Meditation: I use the Simple Habit app for meditation, box breathing, and naps to keep my cortisol levels as low as possible. If I know I’m heading into or leaving an unavoidably stressful scenario, I try to make margin on the front or back end for recovery.

Community: my friends have listened, my therapist has unpacked, my husband has redistributed the load, my parents have invested, my doctors have cared, my network has cheered—it’s all mattered.

When someone navigating their own PCOS asks what do you do? my answer has been everything. For a long time and in various combinations. Some version of it will be required for the rest of my life, because: chronic. But my toolbox is bulging; my endurance muscle feels a bit like it is at the moment, too. Chronic feels different with the confidence of information and resources. 

SHARING

After I received my diagnosis, and especially after our second miscarriage, I made this part of my life all but a part-time job. Not everyone has the privileges to do that or the resources for things like memberships or medications or to take time out of life to sit in a doctor’s office for three hours. Another reason this conversation should never be prescriptive is that we exist among and perpetuate inequities that require so many people with ovaries to figure it out with what they have. Sharing information helps, I think, I hope—saving us all some time and money and heartache where we can. Sharing financially helps, too. There are many PCOS organizations, researchers, and advocates doing great work in the world. PCOS Challenge: The National PCOS Association is one of them that uses your donations to support research, education, and screenings—their work specifically addresses health disparities affecting those with PCOS in communities of color through several targeted initiatives, if you want to check them out and consider giving. 

LOVE

Lastly, and mostly, I want to share that for a long time, I thought that I had a bad body. A body that couldn’t heal, couldn’t sustain life, couldn’t do anything but break my heart. What I’ve learned is that I, like all humans, have a good body that has just been trying to communicate with me. I spent years working to convince myself to love her, but something shifted when I realized that it’s my body that loves me. I love because I’ve been first loved.

To healing, yours and mine,