“I started puberty years later than everyone else”: Living with POI

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We all live under the weight of trying to bear resemblance to the societal expectations put on all of us. Whether it’s gender conformity, looking a certain way, or being a certain way.

As a young woman I have experienced these stereotypes all too often.

I did not go through puberty at the same age as everyone else around me. While everyone was going through changes, I still hadn’t had my period, I hadn’t miraculously grown boobs, I was still practically in the body of a 12-year-old. This led to bullying, off-hand comments about the way I looked.

Already feeling despondent around my fellow teenagers, the lack of support and information about the condition I had made things harder. I couldn’t provide a reason as to why this was all happening.

I want to share my experience of living with Primary Ovarian Insufficiency (POI).

POI is a term used to describe a condition in which the ovaries are not working as they should be. They stop producing eggs and are unable to produce the hormones oestrogen and progesterone. Often described as premature menopause, POI differs from the one that occurs later in life because the ovaries don’t completely fail, and ovarian function can fluctuate.

This is why I did eventually go through puberty with the help of hormone replacement therapy, however, not until the age of 17.

POI in someone my age is quite rare, with research finding 1 in 10,000 women under the age of 20 being diagnosed. It’s not often known what causes it specifically, although in my case it was due to intense radiation therapy, but the risk of this condition affecting someone around you increases with age, with more than 5% of women being affected by the age of 45.

Living with POI can be hard for people to understand, it’s essentially invisible! But it can affect many areas of your life. Some symptoms include: depression and anxiety, hot flushes, poor concentration, poor memory, and it can even have implications with your sex life. Not everyone with POI will experience these symptoms but it does take a toll on you and is all too often overlooked.

There is currently only one charity in the UK supporting women going through POI. The Daisy Network offers advice, information, and support. But, unfortunately, this isn’t really sufficient.

Courtesy of the Daisy Network

Research has found that great care should be taken when discussing POI because it is a condition that affects many things – one of the biggest being fertility, with chances of getting pregnant reducing to just 5%. I for one, do not want children (I’m more of a crazy auntie) but for someone who has dreamed of starting a family, this can be significant news. Adoption, infertility treatment, surrogacy, and fostering are just some of the options open to people who cannot conceive naturally however, many women in this position report feelings of inadequacy and failure which can put a huge toll on mental health.

Furthermore, due to a significant lacking of funding for the women who go through this experience, there is little to no support to any non-binary or trans patients who may experience POI.

Living with POI is hard. In my experience, it can be very distancing. I’ve never truly felt normal amongst my peers, always changing at a different rate to them or looking different – and even occasionally the odd discussion of wanting children.

But it is nothing to be ashamed of. I am still a woman, with or without functioning ovaries, and I am Proud.

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