In the fall of 2022, my husband and I tied the knot in a small city hall ceremony, followed by a beautiful micro-wedding with just our families in the fall of 2023. Our lives felt perfectly on track, and we were excitedly planning to start trying to conceive in the fall of 2024. Then, a diagnosis arrived that flipped my world upside down: Primary Ovarian Insufficiency (POI).

The Subtle Clues I Missed

Looking back, there were subtle clues, peculiar symptoms I dismissed, never realizing they were whispers of POI. At the time, I didn’t even know POI existed, so how could I connect the dots? The first major red flag appeared in April 2024 when my period was over two weeks late. This was incredibly abnormal for me; since I started at 13, my cycle had been a predictable 25 days apart for two decades (you could literally set your watch by it). In all those years, it had veered off course maybe a grand total of ten times. This time, those two weeks stretched into a whopping 46 days from my last period.

Then came June, bringing two periods. It felt like my body was trying to compensate for the April shift. I knew something was off, but a quick Google search (as many of us do) suggested that an “off” period now and then was normal.

By the end of summer, my periods were continuously haywire. I even started early while on vacation in Japan. Trying to find the right products in a foreign country when you don’t speak the language is definitely not how you want to spend your precious vacation time!

Unraveling the Mystery: From Pelvic Pain to a Shocking Diagnosis

After our trip to Japan, I had a pre-scheduled gynecology follow-up. I’d seen my doctor in April for occasional pain during sex (another symptom I hadn’t recognized), for which she’d recommended pelvic floor physical therapy. The therapy was helping, and I reported that back to her. But I also told her how crazy my periods had been since our last visit.

She agreed it was odd and had a few theories, so she ordered some tests. I’d had an ultrasound earlier in the year (I’ve had so many since, the exact date is a blur), which had ruled out a few conditions as it was all clear.

Then the lab results came back. For someone my age, they were shocking. My estrogen was low, my Anti-Mullerian Hormone (AMH) was low, and my follicle-stimulating hormone (FSH) was high. The MyChart app showed normal ranges, and even without understanding the specifics, I knew something was seriously wrong. Like any millennial, I immediately turned to Google for a diagnosis.

You might be wondering why my doctor didn’t tell me the official diagnosis. She was out of the office, and we had a telehealth appointment scheduled to discuss. But I was impatient; I just had to know. My Google diagnosis, however, wasn’t quite right. POI wasn’t even on my radar. Google told me I had diminished ovarian reserve, fewer eggs than I should have for my age. It didn’t factor in my estrogen levels.

After what felt like an eternity, I had my telehealth appointment where the POI diagnosis was unofficially confirmed. To be absolutely sure, I had to repeat the labs and get the same results, which I did. The confirmation was devastating.

During that anxious waiting period between lab tests, my husband and I went to Bethany Beach with his family, including four young kids. We hadn’t told anyone what was going on, and I had to put on a brave face, pretending nothing was wrong while surrounded by children. In the back of my mind, I was grappling with a diagnosis that, I believed at the time, would make having kids almost impossible. The emotional toll and raw reality of this condition are immense; I won’t sugarcoat it, it is incredibly difficult. I will go more into POI & trying to conceive in future blog posts. 

While the potential complications of POI were scary to read about (and I’ll delve into those in future blog posts), it was a small comfort to finally have a name for what was happening to me. It also made me reflect and realize I had been experiencing so much more that I had just written off as “normal” or “bearable.” Beyond the period changes and pain during sex, I’d been battling brain fog, hot flashes, trouble sleeping, and low energy. The hot flashes became more frequent in summer, so I attributed them to the heat and hoped they’d disappear when Chicago’s cold weather returned. 

And the brain fog, especially at work and during meetings, was relentless. I created little hacks for myself and blamed it on being tired and not sleeping well. Of course, I’d have trouble focusing without proper rest! There’s so much more I could go into here, but my main point is this: listen to your body, believe yourself, go to the doctor, and advocate for yourself. I am so thankful I had a doctor who took every little concern seriously.

Finding Connection and Building a Community

When I first received my diagnosis (and sometimes even now), I felt so utterly alone. I didn’t know what to do or where to turn. There isn’t much online about POI, and resources for those living with it are scarce. Thankfully, I found a few Facebook groups with women going through the same thing. But it made me think: what about the women not on social media who want to connect? This question sparked the creation of My POI Journey, a resource for others with POI and a safe place for us to connect.

In upcoming blog posts, I’ll dive deeper into symptoms, treatments, trying to conceive (both personally and medically), healthy recipes, tips and tricks for managing this diagnosis, and much more. Please explore this website and all it has to offer. You are not alone.