When you ask the internet “What is POI?”, the first thing that comes up is either Polynesian food (which, maybe weirdly, reminds me of that Peter Pan movie “Hook”… am I just old now?) or those fun things you swing around as you dance. Neither one of which we’ll be talking about here (but here’s a link to that food fight scene if you were getting nostalgic).
Ava Vanderstarren and I met a few years ago in Vancouver, and I must admit I don’t remember the exact circumstance of it all, except that it had something to do with her charity Innocence Lost Foundation, that has been hosting fundraising events with live music quite successfully for a while now and would definitely be worth its own article (and yes, Ava, this is a nudge).
When I recently saw Ava’s post about a journal that her and her partner in crime on this particular project that we ARE going to be talking about (yes, I know, long lead-up, I’m sorry) I was very intrigued, as I’d never before heard about Premature Ovarian Insufficiency. Which – you guessed it – is abbreviated POI. So I got in touch, and being the very efficient organizer that she is (among many other things), Ava set us up for a call with herself and Anita – whose Nigerian name is Airuekhia, which is pronounced something like Ioh-ey-ah (I hope she’ll excuse my horrible attempts at phonetics) and means “One shouldn’t think all events”, which I thought was quite lovely. And is clearly alluding to what I came to witness as a really inspiring sense of self-sufficiency, not a “no f’s given”-attitude, because Anita definitely cares about many things. POI being one of them.
So to stop beating about the bush, let’s find out what that actually stands for. POI or Premature Ovarian Insufficiency basically means that a woman is entering menopause at an age that’s often much younger than the average age for this period of a woman’s life cycle (which is 51, in the UK, in case you were wondering). By the way: The UK being right next to Dublin – Anita’s home base for the past 19 or so years – is where most of the research and resources mentioned both in the Blossom journal and, hence, this article will be coming from. It is also home to Dr. Louise Newson, the “Menopause Doctor” that has helped women like Anita come to terms with and get proper treatment for their condition and is, as her website states, a pioneer in menopause research, treatment and advocacy.
Both Ava and Anita were diagnosed with POI at a very young age – in their teens – which is the case for around one in 10,000 women under 20. Menopause – which is not the same as Premature Ovarian Insufficiency, exactly, although lots of the symptoms are the same – is considered “early” under the age of 45, but over 40. Anything below that is called POI, or Premature Ovarian Failure, and sometimes Premature Menopause – which can be confusing, especially when you’re really young and trying to figure out what’s happening to your body in a world that, despite this affecting quite a few women (around one in 100 under the age of 40), has very little to show for comprehensive research and hence, public knowledge on the issue. Which we’ll come back to in a bit.
To give you a rough idea of what menopause in all its variations entails: The organ that produces eggs in a woman – the ovaries – stop working, either completely or to a certain degree. One of the main functions of these eggs is to produce hormones (estrogen and testosterone being the most “famous” ones), so when that stops, hormone levels drop, often quite dramatically, which has a tremendous effect on the body and the brain. One quote on one of the websites that Anita and Ava reference in their very comprehensive resource section of their journal (and yes, don’t worry, we’ll get to that, too) puts it like this:
“The Process whereby periods stop is a gradual one, in most cases, and is a long process of changes akin to puberty.”http://www.daisynetwork.org
Menopause, by the way (and I will admit that I was today years old when I learned that, as the cool kids these days say) is what describes the time when a woman no longer has her period for said reasons. Specifically, it’s defined as happening when someone hasn’t had a period for over 12 months. So POI is when that happens “before the age of menopause”, as Anita puts it – again: pretty much anytime under 40.
There is a lot of uncertainty as to why POI occurs in women, unless there’s a very obvious reason – like the ovaries being affected by cancer, and/or cancer treatment, or the womb and/or ovaries being surgically removed. Other reasons are a little harder to pinpoint: There’s research suggesting it may coincide with or be caused by certain auto-immune conditions like Hyperthyroidism (about 1 in 20 cases). There’s also good reason to believe that one influences the other. Traumatic experiences in childhood can have an affect, and stress can, too. A lot of the time, people – including doctors – just don’t know. The tricky part with POI is that the ovaries don’t necessarily completely stop working, as hormone levels can shift over time. So a small percentage of women will still sometimes get their period, and can even get pregnant.
Fertility, however, is really only one of the issues associated with POI; albeit the most “prominent” one – and hence the one most doctors who might not have a very deep knowledge of the issue will focus on. What happened to Anita, for example, when she was first diagnosed with POI at the age of 19 (after not having had her period since her first one at age 15) was that she was told: “Here’s some hormones, let us know when you’re ready to have kids and we’ll talk about IVF and donor eggs”. And that was that.
While Hormone Replacement Treatment (or HRT) is as of right now the only drug treatment that will help living with POI – basically replacing the hormones that the body no longer produces – there is a lot more that can be done to support women on this journey. Which, in both Anita’s and Ava’s – and countless other young women’s – cases, they had to basically figure out by themselves. Because remember how we talked about there not being a lot of research on this? While this seems to gradually change – not least of all because of activists like Anita and Ava, and forward-thinking doctors like Dr. Newson – the general medical practitioner still knows shockingly little about the condition. As Anita says: “When I talk to some women now in the community, they often say ‘I wish I had known this a few years ago when I was diagnosed’, and I just can’t believe it. Even now – 2021, 2022 even – women still can’t get proper information from their doctors”.
Which is ultimately what brought about the idea of the Blossom journal. Both Anita and Ava – who was diagnosed when she was 17 years old – remember feeling very overwhelmed, and mostly left to their own devices when it came to figuring out how to live their lives without the proper level of hormones in their body: “Those kinds of hormones are meant to keep you going in life”, says Anita, and indeed estrogen, testosterone and progesterone (the less popular of the three hormones being produced in the ovaries) run a whole lot in our bodies – not just women’s. We’re talking about blood sugar levels, bone density, heart and artery health, brain and memory function, and of course emotions. That’s only naming the major aspects.
So when you’re looking at chronically low levels of this really important stuff for not just the latter third or so of your life – which is rough enough, ask your Granny/Auntie/Mom (or yourself, of course, if you have ovaries and are/have experienced menopause) – but for really most of it… that’s a pretty full plate. Having your doctor tell you to just take a pill and not worry too much about it until you’re ready to have kids, and/or being dismissed when bringing forward concerns about the other effects of hormone deficiency – which happened to both Ava and Anita numerous times before they finally were able to find specialists who actually knew what they were talking about, and doctors who cared enough to listen – especially when you’re a teen or in your twenties might just lead you to “let it go”, which doesn’t help anyone, let alone young women.
“It shouldn’t be up to us to figure out what to do – but at the end of the day, it is”Ava
So that’s what they did, and for years: Figure it out themselves. And let’s be honest – Anita and Ava are among the more privileged ones, as they had access to – while not always qualified or interested, at least some – healthcare and treatment, even though in both cases, it took a long time to get that to an adequate level. Because the other side to the story is that Hormone Replacement Therapy is still almost exclusively aimed at women who reached menopause naturally, at the “normal” age. So when given this treatment, more often than not, the replacement amount is assuming you’re in your 50s, where hormone levels would already be much lower than in, say, a 20-year-old healthy woman.
“It’s very hard to constantly have to advocate for yourself, and basically push the doctor to get the care that you know you need, because they don’t entirely understand the condition”Ava
At the time I’m talking to Ava and Anita, they have been doing their own advocating for their health for many years, and they’re veterans by now – not afraid to ask their doctors for higher dosages and different treatments, seeking out alternative medicine to support their quality of life and a “sense of normal”. But it’s hard, especially because another main symptom of menopause and POI are often general lower energy, fatigue, and high levels of anxiety – not to mention brain fogs. “Mental Health is a big aspect of hormone deficiency”, Ava knows – who is working as an actress and model to pay the bills, both of which are by definition high-stress jobs. In her case, she can pick her jobs to make sure she doesn’t burn herself out, but when you’re working 12-15 hours a day and need to rest for two days after, that’s half your week gone right there. And that’s not mentioning the social pressure, and the judgement. Even now, as “self care is the new health care”, as google search suggests (no kidding, try it!), resting for an entire day is still mostly frowned upon in the western world.
That POI is a condition that people “can’t see” doesn’t help, not just with lack of understanding of an afflicted’s confusion or impaired memory, exhaustion or depression – but also around things like asking about having kids. As Ava says: “People forget”, and Anita adds that, outside of the POI community, which has provided both of them with invaluable support over the past few years – nobody “really gets it”. Anita has gotten to a point where she “just doesn’t care anymore” when people nag her about having kids – which is a big thing, especially in the Black community, she says. And Ava has gotten many shameful apologies by friends who keep asking her when she and her partner will start a family, and has to remind them of her condition.
And that’s another reason why their activism is so important. Not only to bring the medical concerns for young women to the attention of an industry that still focuses mostly on men’s health, because that’s where the money is. Or to support young women in their life-long journey with what can be an extremely frightening diagnosis, if you don’t have a doctor that “will actually listen and take an interest in what’s happening”, as Anita says – because information is still confusing and, a lot of the time, conflicting. And because, while there’s research available, there isn’t enough funding to conduct a lot of it, or get it out there. So it’s no wonder people forget, or don’t know – because it’s not in the public eye. Yet.
It’s slowly getting better, though, my women warrior interview partners are happy to report. Platforms like the Daisy Network, Dr. Newson’s Menopause Charity Anita is an active supporter of, and of course individual endeavors like Anita’s various channels which lend their name to the beautifully designed “Blossom Living with POI / Early Menopause”-journals packed with resources, prompt questions for your doctor, space for notes and to record results, medication levels etc. etc. – are starting to bring this matter to the surface, despite the fact that menopause, especially when experienced early, is still not something that’s talked about, generally. “Nobody wants to come out and talk about this – but we need the representation”, says Anita: “People in the top places who are making those kinds of decisions need to know that their decisions affect all women, and younger women in particular”. Because getting a diagnosis like this will be, in most cases, a traumatic experience and, especially for those who are diagnosed in their teens, can be extremely isolating due to the lack of communication around it.
Which is why the POI community has been such a saving grace for Ava and Anita, and why they will keep fighting to get their condition on the map, and talked about. When Ava reached out to Anita via Instagram in the summer of 2020 – as they recently shared in their live-chat on how they created the beautiful journals that are now available for print-on-demand on Amazon – Anita was still in the beginning phases of what has now become one of her main activities next to her job and her role as supporter for the Menopause Charity. “I never wanted to be a spokesperson”, she says – but you know she’s doing a pretty amazing job at it regardless, regularly posting videos on her YouTube channel and talking to different people about all things POI to support the community and raise awareness. So when Ava, who had been living with POI for over 10 years at the time, found herself in a place where she really needed some support from other survivors, sent her a message, they “immediately clicked”, says Anita. Shortly thereafter she decided to bring Ava in on this project idea she’d been carrying around for a while, of creating a tool to help women with a POI diagnosis stay on top of their records, medication and symptoms while finding support through resources and community, all of which the journal provides helpful information and links on. Combining forces with Dr. Newson, who agreed to review the journal – which is explicitly not a source of medical advice, but does provide links to places people can find it, of course – they managed to put this piece of art together within a pretty impressive time period of just about a year, especially considering Ava had to tap out for a while due to health reasons.
This kind of connection is exactly what sparked inspiration for the journal – and the essential need for support on this journey found in community and self-advocacy. “I wished I had something that would have helped me gather information”, Anita remembers her process with her diagnosis and assessments over the years, especially because information changes so rapidly and is often still conflicting, or plain wrong. So after months of video chats over the considerable time difference of seven to eight hours, which included quite a few late nights for Anita, they are now finally able to hold the finished product in their hands, and very excited about every copy that sells, anywhere in the world: “We wish we could contact everyone who gets the journal”, Anita says, after they excitedly told me they recently sold their first copy in France. Thankfully, some people do reach out, and they’ve received valuable feedback from other members of the community. And it’s clear that this is not the end of the road for them: Plans to finally meet up in person – life and travel restrictions permitting – are only the beginning for what they hope will be a lasting friend- and business partnership in the battle for awareness of POI.
So in the end, what I come away with is a sense of gratitude and admiration – not to mention a huge amount of new information on this important issue, that I can only scratch the surface of here, but now you’ll know where to find more of that, and get involved, right? And mostly, I’m just humbled by the strength of these two young women, who will continue to speak out, to stand up for themselves and others, and to grow awareness that is so crucial to make the lives of so many women living with POI better – medically, socially, mentally. I feel like I got to see the beautiful seeds Anita and Ava are planting, and am excited to see what flowers they’ll grow next.
“Something dies along the way, but there are always new things along the way that come into bloom – that’s where Blossom comes from”Anita
- POI Resources you can find in the journal
- The Blossom – Living with POI / Early Menopause journal on Amazon
- Anita’s project BlossomLivingwithPOI on Instagram , Facebook and YouTube
- Ava on Instagram