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Being diagnosed with Premature Ovarian Insufficiency as a teenager, can be a very daunting experience. For many teenagers with POI, the diagnosis isn’t always as obvious as it is when it occurs at a later age. For many women, it is when they are trying to conceive that they find out about the diagnosis, or they may suddenly begin getting menopausal symptoms. For teenagers, one of the common symptoms of POI, is that they never actually get periods at all or they get their period once or twice and then it stops. Now this doesn’t sound too unusual, plenty girls have erratic periods when they first start, and some don’t get their periods till later on in their teens, but according to The NICE guidelines, if you haven’t started your periods by age 15 or if periods stop for 6 months after starting, this could be a sign that you need to get checked for POI. You may start to experience symptoms such as anxiety, mood swings, hot flushes and weight gain, but this isn’t always the case. When you have POI at a really young age, your oestrogen hasn’t reached its full levels yet, so when POI happens, the hormonal decrease isn’t as drastic, which can mean you don’t always get symptoms.

If you’re diagnosed with POI when you are still a teenager, often the fertility side of things isn’t the most pressing issue. It is hard when your future plans are taken out of your control and very upsetting to learn that you may not be able to have your own genetic children, but you also have school, college, exams and plenty of other stuff you need to focus on. We suggest seeing a counsellor to discuss your feelings towards future fertility. Even though it may not be a concern right now, it can be good to help process any thoughts you have and to make sure your diagnosis doesn’t impact on your school or social life.

Like many girls, you might worry about how POI will affect your body. Some girls with POI find they have a delayed puberty and this can make you feel like you are behind your friends in terms of physical development. Once you have been diagnosed with POI and are put on the correct hormone medication, this should give your hormones the boost they need to make sure you go through puberty and have the same hormone levels as other girls your age.

You might also be concerned about how to tell people, whether it be friends or future partners. Often your medication will be the contraceptive pill or a similar looking hormone tablets that will induce periods, exactly the same as plenty of other teenagers take. But don’t feel pressured to tell people unless you really want to, it is your decision as to how open you want to be. We have a blog post below to help you to approach the subject of your POI diagnosis with a boyfriend/partner, but please be assured, when people meet you, having the condition should not be an issue.

One positive (if there can be one) of being diagnosed as a teenager is that you know about your diagnosis years before the age of starting fertility treatment. You can grow up alongside the diagnosis, have time to process it, seek help and guidance so that you can plan for the future should the time come that you want to seek fertility treatment. 

Getting diagnosed as a teenager isn’t easy. These years are tumultuous enough without having to deal with medical appointments and fertility, which you wouldn’t usually be thinking of for years to come. But please rest assured you are not alone. If you want someone to talk to who has been through this please email amy@daisynetwork.org.uk 

Here are some articles you might find helpful 

Amy’s Story

Rebeccas Story

Amandas Story

Laurens Story

I haven’t started my periods I could it be POI?

The Psychological Impact of POI

How do I tell my boyfriend I have POI?

A boys perspective.