29 Jun POI isn’t early menopause – a personal share
I recently listened to a podcast by the wonderful Nicole Jardim and Dr Leonhardt about the condition I have POI- Primary Ovarian Insufficiency (or as it was previously called premature ovarian failure).
There were some points raised that I hadn’t thought about before and I’ve been processing since I heard them.
I remember being so shocked when I was diagnosed. I’d had years of blood tests, scans and exploration and everyone kept saying there was nothing wrong but they weren’t doing the right test. I battled and battled to see specialists and finally I got told I was in early menopause but it had this weird title with the word failure in it.
I was told to take HRT and that was it, my appointment was over and I sobbed the whole way home in the car by myself.
I had been so unwell for so long that to suddenly have this diagnosis seemed really sanitised and I didn’t know anything about HRT so was thrown into research. So now I was unwell and in shock and I was offered no advice or information.
I started telling everyone that I was in early menopause but I originally struggled so much with the shame and stigma around it.
Of course this is what led to my research and the creation of the groundbreaking work we do so I’m incredibly grateful for my journey but there’s some differences.
On the podcast Dr Leonhardt was urging listeners to call this condition by its real name. It’s not an early menopause.
Menopause is bad enough but there’s an end point. Women as young as 11 have POI and whilst some will have no untoward symptoms others, like me will have decades of managing an unstable system. HRT is only part of the picture because you must be exploring “why” they developed POI in the first place.
I’ve always said mine acts more like an autoimmune disease. I get flare ups if I put a foot wrong in my self care and routine that can leave me in bed for days. I get all the menopause symptoms but mine could have already been going on for 10 years and I could have another 10 . My hot flushes and horrendous brain fog are much better due to my HRT but I have the memory lapses, tiredness, food intolerances, gut issues, bloating and unstable weight. I still bleed sometimes for 3 weeks a month, I sometimes have agonising ovulation pain, I’m battling insomnia and poor sleep. It’s not curable. HRT can help but my HRT is never a stable dose as I have to react to what’s happening in my body. If I want to function properly I have to be ON it with food, sleep, exercise, rest and no stress – it’s so disheartening and boring. Sometimes I get a month of feeling like I might be ok but then it all changes.
POI is a condition which requires careful lifestyle and hormone management and it shares many symptoms with menopause but it’s different, and I for one have fallen foul of not calling it by its name and thats medical gaslighting and it stops women accessing the support they desperately need. 12% of us in the UK have it so we need to raise awareness. It’s not menopause it’s a life affecting and life shortening condition if mismanaged.
So it’s time to own it
I have primary ovarian insufficiency. It’s not early menopause and it kicks my arse on the daily.
I grieve for the woman I was 7 years ago who didn’t get the support she needed and had to find my own way. By sanitising my diagnosis it allowed me to be sidelined.
But something magical happened. By having this diagnosis and sharing it (a lot of women don’t want to because of shame) I saw women open up about their journey and I saw how lost they were and that no one knew the answers. I realised my fight is your fight and it set me on this path to finding the answers which has led to the work I do, and an international training college which educates practitioners, so more women are supported.
I’m so grateful to have walked the path with so many of you courageous women struggling through your menopause transition. Supporting you is an honour and it’s my souls purpose to help you navigate this but your journey also helps me and it’s great to know I’m not alone.
Menopausal women – I’m not diminishing your experience – I hear you and I’ve got you 100%. This process can be awful and I see your struggle but I promise there is hope and a pathway.
Women with POI – let’s own this condition and share how it’s different to menopause.
Nicole and Dr Leonhardt thanks for showing me I was sanitising my experience.