I Was Diagnosed with Primary Ovarian Insufficiency (POI): 3 Things I Wish Someone Had Told Me
By Kelly Clinning, ND | Women's Hormonal Health
When I was diagnosed with Primary Ovarian Insufficiency (POI), I was already a naturopathic doctor.
I understood hormones. I understood fertility. I knew what the diagnosis meant medically.
Even so, I found myself asking many of the same questions my patients ask today.
How did this happen?
Did I miss something?
Is this my fault?
What does this mean for my future?
Knowing the science didn't make receiving the diagnosis any easier.
Like many women, I left that appointment with far more questions than answers. I was trying to understand what this meant not only for my health, but also for my fertility, my future, and the life I had imagined.
Looking back, there are a few things I wish someone had told me.
If you've recently been diagnosed with Primary Ovarian Insufficiency, or you're trying to understand what this diagnosis means, I hope these are some of the things you need to hear today.
Primary Ovarian Insufficiency Doesn't Look the Same for Everyone, and It Isn't Your Fault
One of the first things I wish I'd known is that Primary Ovarian Insufficiency doesn't always look the way people expect it to.
Before I was diagnosed, I wasn't experiencing dramatic menopausal symptoms. What I noticed were changes in my menstrual cycle.
At the time, it was easy to explain them away. We were in the middle of COVID, I was building my practice, and my husband and I were planning, and then replanning, a wedding. Stress seemed like the obvious explanation.
In hindsight, it's easy to wonder whether I should have recognized the signs sooner. Many women ask themselves the same question after they're diagnosed.
The reality is that Primary Ovarian Insufficiency is often under-recognized and underdiagnosed.
It doesn't always come with obvious menopausal symptoms, and changes to your cycle can easily be attributed to stress, thyroid dysfunction, or other hormonal conditions such as PMOS (previously known as PCOS). Like many hormonal health conditions, Primary Ovarian Insufficiency doesn't present in one single way.
Some women are diagnosed in their teens because they never start menstruating. Others experience significant menopausal symptoms in their twenties or thirties. Others, like me, may only notice subtle changes to previously regular cycles, making it much less obvious that something more significant is happening.
Because every woman's experience is different, it can take time to arrive at the diagnosis.
If your diagnosis took months, or even years, to reach, please don't blame yourself. You didn't miss something obvious.
Most importantly, Primary Ovarian Insufficiency is not something you caused.
For most women, we never identify a clear reason why it happened. Most cases are considered idiopathic, meaning we simply don't know the cause. Some cases are linked to genetic conditions or autoimmune diseases, but it is not caused by stress, something you ate, or something you did wrong.
If your cycle has changed, or something simply doesn't feel right, it is always worth having the conversation with your healthcare provider. Most of the time it won't be Primary Ovarian Insufficiency, but changes to your menstrual cycle deserve to be investigated rather than dismissed.
You Don't Have to Figure It All Out Today
One of the things I wasn't prepared for after my diagnosis was how long it would take to process it.
There was grief, certainly, but there was also uncertainty, confusion, and a lot of questions.
Not everyone will experience Primary Ovarian Insufficiency in exactly the same way, but one thing I've noticed, both through my own experience and through caring for women with POI, is that this diagnosis often takes time to come to terms with.
It doesn't seem to matter whether you were diagnosed as a teenager, in your twenties, or in your thirties. Whether your diagnosis came quickly or after years of searching for answers. Or what your biggest concerns are moving forward.
Some women feel overwhelmed immediately. Others keep moving forward and don't fully feel the emotional impact until months later. Many experience a combination of emotions that changes over time.
If you're still processing your diagnosis weeks, months, or even years later, that's okay.
You don't have to figure it all out today.
You don't need to have every decision made about hormone replacement therapy, your future, or what comes next right away. Give yourself permission to learn, ask questions, and take one step at a time.
This diagnosis is a process, not a single moment, and you don't have to navigate it alone.
There Are Many Ways to Build a Family
One of the hardest parts of my diagnosis was accepting that my path to parenthood was going to look different than I had always imagined.
For many women, a Primary Ovarian Insufficiency diagnosis and conversations about fertility happen at the same time. That can feel incredibly overwhelming.
One of the most challenging aspects of Primary Ovarian Insufficiency is the uncertainty. Unlike natural menopause, ovarian function can sometimes be intermittent. That uncertainty can make decisions about fertility feel incredibly difficult.
Should you keep trying naturally?
Should you pursue IVF?
Should you consider donor eggs?
Should you wait?
There is rarely one "right" answer, and every person's circumstances are different.
What I eventually learned is that there are many beautiful ways to build a family.
They may not look like the path you originally imagined.
They may involve difficult decisions, unexpected detours, and periods of grief.
But a different path does not mean a lesser one.
For me, becoming a parent looked different than I had always expected. It wasn't the journey I would have chosen, but it led me to my son, and I wouldn't change that for the world.
If building a family is one of your goals, I hope you can hold onto this: a Primary Ovarian Insufficiency diagnosis doesn't define what your future family will look like. It simply means your path may be different from the one you expected.
Wherever You Are Right Now
If you're reading this because you've recently been diagnosed with Primary Ovarian Insufficiency, I'm sorry that this is something you're navigating.
I know how overwhelming those early days can feel because I've been there too.
Looking back, these are the things I wish someone had told me from the beginning.
This diagnosis may change the path you expected, but it does not define who you are or what your future can look like.
Dr. Kelly Clinning, ND
Dr. Kelly is a licensed naturopathic doctor practicing virtually across Ontario, with a focus on women's hormonal health — including perimenopause, menopause, premature ovarian insufficiency, pregnancy and fertility.