Week 2 Menopause Blog - Nikki's Story 'Aching Like I'm 80'

Menopause isn’t the currency of a certain age group, somewhere out there we may have students, or other staff members, who ache like they are 80, but look like they are 20, and carry an emotional burden that is ageless.

Nikki

In our second blog for Menopause Awareness Month 2022, Nikki has kindly shared her story about experiencing early menopause in her 20's. Thank you so much Nikki for sharing your experiences, read her words below:

Aching like I’m 80 – Why menopause isn’t an age issue 

'I went into premature-menopause at 22, we think.  It's hard to know for sure because of the length of time my symptoms had been, unwittingly, masked by the hormonal contraceptive pill.  I was at the end of my first year at University and my first symptom was bleeding.  I bled for 8 weeks.  It was the assessment and exam period (no pun intended) and I was wiped out, emotionally, physically, and I was in a lot of pain.  The GP was dismissive and suggested I drink and fraternise less, and my request for Mitigating Circumstancess was rejected by my University because ‘women’s problems’ were not considered to impact academic performance, my case was just not extreme enough.   

And so was my introduction to a very long and difficult battle with health professionals, and society, to acknowledge the menopause, and its impact on quality of life, for a young person.   

Luckily, in a way, I WAS young, so I was also full of that anti-establishment rebellion that meant I was tenacious, and unforgiving in my quest for answers, and I was comfortable telling a GP that he was welcome to refuse to refer me for a specialist opinion but I wanted it including in my notes, as, I was happy to sue him if his diagnosis of ‘periods aren’t fun suck it up’ turned out to be wrong (not sure that would be my approach now at 41, though I have to say in an effort : results ratio, it was certainly successful).  

Following that GP appointment, I was referred to a Fertility Specialist who ascertained within 1 appointment that my AMH was <4 … apparently it doesn’t matter how much less than 4 it is, because it’s the same bag of bad news whether your just under or hugely under.  AMH is an (imperfect but the best we have) measure of ovarian reserve; a posh way of putting a number on “how many eggs you’re carrying in your ovaries”.  For those of us living with Premature Ovarian Insufficency (POI), it is one way to determine whether we are infertile or not.  Sort of, it’s not exact.  It’s a very bad measure of whether you have POI (which should only be diagnosed following the steps set out in the NICE Guidelines), but it can be a good measure of how successful IVF might be.   

For me personally, I was told that IVF works 1 in 3 times, and they felt that they would collect less than 1/3 of the eggs from me than they would need for a successful IVF journey.  You’ll have to forgive me here as I am an English Grad and not a Science or Maths one, but 1/3 of a thirds chance, seemed very low to me (it’s not nil, but again on that effort :effort: results ratio, it didn’t look good).  We did not go on an IVF journey.  However, just as my ovaries spontaneously stopped working, for a short period of time in 2016 they spontaneously started working, and we found ourselves pregnant with an unexpected (but very much wanted) baby.  The next gynecologist I saw told me that, that happens 1 in 10 times with this condition, they don’t know why. 

When you’re young, the biggest challenge with this diagnosis is the fertility.  In our support group it is the one thing that comes up again and again.  How do we cope with pregnancy announcements? How does someone who yearns to be a mother learn to cope with the news they may never be one? And for those of us who do get to be mothers? We are incredibly lucky – and guilty – and feel that unfairness every day for our sisters who may never realise that dream.   

If you’ve never had to turn down a coffee invite with friends because you have no childcare and you can’t just take your child along to that meet up armed with a tablet (and some excellent 21st Century parenting) as he’d be a constant reminder for a large proportion of the group of the hardest part of living with this condition, then please do consider yourself fortunate, and hug your own kids a little closer – I can promise you, you’re living someone else's dream.  

I fought for 12 years to see that Fertility Specialist who told me, after one blood test – in my opinion you have already been through the menopause – I responded – no I can’t have, I asked my GP to test me for that and he said I am fine – to which she responded, he did the wrong test – and sadly this is still the story I hear daily from people of all ages struggling though the menopause.  Awareness is improving, treatment is improving, quality of life is improving, but not enough and not fast enough.  

People with ovaries need estrogen.  Every single system in the body, every cell, every membrane, every muscle is designed to work with estrogen, when it lowers these systems cease to function in the way they should – dry eyes, dry skin, sneezing, tiredness, fear of functional tasks (like driving), brain fog, anxiety, depression, low mood, tears, insomnia, sweats, tinnitus, hair loss, and a multitude of other things are symptoms of the menopause.  Oestrogen Matters (and for that matter so does Testosterone but that’s another story). 

I’d like to leave you with the idea that Menopause isn’t the currency of a certain age group, somewhere out there we may have students, or other staff members, who ache like they are 80, but look like they are 20, and carry an emotional burden that is ageless'.