At first I thought the specialist was talking BS. In fact it took a further three years and a raft of tests and scans for me to get confirmation he had been right - damn it.
“Your test results show you have premature ovarian failure (POF), or early menopause. It’s pretty rare. You probably won’t be able to have children. You’ll need to go on HRT to protect your heart and bones. I’ll give you a prescription but your GP will be able to look after you from here.”
It seemed to happen overnight, sneaking up silently without warning…back then (1993) there were few options and even less support, but everything happens for a reason even if we don’t know what the reason is at the time.
Do you know your body is very clever? At times of great stress it can go into ‘survival mode’ and shut down systems that aren’t necessary for survival…reproduction is one of those systems.
Early menopause had arrived…
After a hugely stressful episode in my life in which I lost a lot of weight quite quickly (I ended up at 47kg in a 4 month period), my body went into this ‘survival mode’ and my periods stopped. I had no menopause symptoms, apart from no periods. After a few months being period-free I thought I had better get things checked out. Blood tests revealed I had gone into early menopause (POF - premature ovarian failure). Actually my FSH and LH levels showed I was now post menopausal.
Research, reasons and relating…
After a time, I started doing some research on the internet and found a support group in the USA (there were no support groups in NZ at that stage). I found comfort in sharing with other women going through the same issue.
It’s an odd thing, this early menopause. On the outside you look just the same, normal…but on the inside your body has changed to that of a much older woman…you look the same, but you are different.
Your body has a secret – you can’t relate to women your own age anymore, particularly when they are getting pregnant and having families of their own. And you can’t relate to older women going through menopause at the ‘usual’ time in their 50’s, who laugh at ‘senior moments’ and ‘power surges’, as you’re not a senior and you feel far from powerful.
So, armed with HRT, which helped make me feel physically ‘normal’, I got on with life. A few years later, after the death of my mother, I decided I wanted to try and have children. The specialist kept saying, “I’m not hopeful”, but put me on fertility drugs to see if we could 'shock' my system into producing eggs from any remaining follicles my ovaries had.
After a few months of no success I wanted further investigation to see if this was really a viable reality. The specialist performed a laparoscopy. This is where they put you out, make three incisions in your stomach – one under your belly button, one at each ovary, pump you full of air and put a little camera inside to have a look see. It was revealed that I actually only had ONE ovary; the left one was a “streak gonad” and had never developed.
I then went to Fertility Associates for more answers – was my remaining ovary ever likely to produce enough eggs to get pregnant? I had an internal ultrasound and I was told that my one remaining ovary was a shriveled up raisin, like that of a 54yr old woman (I was 32). It was hard hearing that graphic description but at least I could get off the emotional roller coaster of hope and start to move on with my life.
I then wanted to know why this had happened, what had actually caused the early menopause. With my mother no longer around I couldn’t ask her anything about her history. Dad seemed to think she’d gone into menopause not long after having me (she was 38 when I was born).
So, along with a raft of further blood tests I was sent for chromosome testing. It was revealed that I had a missing X chromosome which had impacted my reproductive system while developing as an embryo. I was diagnosed as having “Mosaic Turner Syndrome”.
“A small deletion on the X chromosome may result in a single Turner syndrome feature, such as ovarian failure or short stature, and no other effects.”
Finally I had an answer! And I’m lucky to have an answer. Most POF’ers will never know what has caused them to go into early menopause.
HRT and being a ‘guinea pig’…
I have tried various forms of HRT, vitamins and minerals to help my body cope with this early shut down. Women are often surprised to hear I am on HRT and have been for 20+ years. The thing is, those of us who enter menopause early are in a very different situation than those entering menopause at the ‘usual’ age of 50+…
The belief of the specialists and doctors is that we need HRT to help protect our heart and bones due to the long term effects of having much reduced estrogen… HRT is only replacing the hormones our body is not producing, but should be at our young age.
In reality we are really guinea pigs. There is no funding for research on the long-term effects of HRT as there are many more life threatening illnesses out there that need research more than early menopause.
I have tried various HRT options. The ‘natural’ option of estrogen cream and micronised progesterone unfortunately left me with a huge loss in bone density of 8% in 12 months because my body wasn’t absorbing the cream in a high enough dose to help. Epic fail – I was absolutely gutted!
For the past 15 years I’ve been on a bio-identical estrogen patch and progesterone capsules. This has worked really well for me as I can control the estrogen dosage myself…I’m on a pretty minimal dose, if it gets too high I end up with breast issues (a lumpy, tender left breast which I’ve had checked out for anything sinister in the past…all is ok and it's totally hormone related).
Bio-identical HRT is still manufactured in a lab, but its chemical make up is the same as your body produces. I’d rather be on something that is as identical as possible than something that is completely foreign to my body (as in synthetic HRT).
So, apart from the physical symptoms that affect the bodies of early menopause women, there is of course, the huge emotional impact as well. Not being able to have children easily, or at all; deciding to use donor egg, IVF, or other means to try and get pregnant; adoption, remaining child less etc. It’s a lot to deal with.
I am thankful in some respects that I didn’t have a powerful maternal drive to have a child of my own. It wasn’t something that I desperately needed. I decided donor egg or adoption wasn’t for me and that I would remain “child less”, pursuing other things in my life that gave me fulfillment and joy.
It’s been hard over the years watching friends have children, then their children have children, and see the special relationships they have – something I wouldn’t experience. It wasn’t easy on many occasions – especially Mother’s Day in the early years of diagnosis and Christmas time – Christmas is for children and families…it sort of rubs your nose in it really. I now hate Christmas.
Over time, bit by bit, I have found it does get easier. I have not let it rule my life. It had a big impact for a number of years but I’ve found that as I’ve got older and got on with things, I’ve come to a place of acceptance and amazingly, gratitude. The diagnosis of premature ovarian failure has sent me on a path of exploration and amazing experiences that I couldn’t have dreamed of.
The path of gratitude…
After going through the physical and emotional trials that I have, it has made me so much more empathetic and caring. With the long-term health implications of going into menopause early, such as heart disease and osteoporosis, I became interested in natural health alternatives.
This led me to train as a Bowen therapist and massage therapist back in 2003-05, which in turn led me to beautiful connections with others – helping them ease their own pain physically and having an empathetic ear, someone to listen to. I then grew into hosting women’s weekend retreats. That time of my life was hugely rewarding. I felt fulfilled. I felt needed. I got to know what it was like to give, to help, to make a difference.
One of the absolute biggest gratitudes of my life came with my explorations in 2011, when I went to Bali for five months to meet a young 10 year old boy (Gede) who I had started sponsoring, and to do some volunteer teaching at the Yayasan (not for profit school) he attended. That experience was HUGE and the catalyst for major change in my life.
Gede has given me something I never thought I would ever feel – a deep motherly love. Even though he has a wonderful mother, father and family, I know I will always have a special connection with him and be able to help and support him in ways they cannot (particularly financial and other opportunities).
It feels wonderful to be there for him, if and when he needs that support. He’s helped fill the void that was inside me that I didn’t realise was there until I met him, we connected, and I fell in love.
I also now share the sponsorship of his sister Kadek. They are my Bali family…Gede is now 20 and Kadek is 17 and they mean the world to me. I travel to Bali every year to see them. There's always tears of joy at our reunion and tears of heart break when I leave, but we’re in each others lives for a reason and I know we’re in each others lives for a lifetime.
So, if anyone reading this has fertility issues, or you know of anyone with fertility issues; please know, there is life after this. There are many, many options available for you to experience motherhood – they just might not be exactly how you imagined.
And believe me when I say – when you give from the heart to someone who needs it, and appreciates it, that void will fill, and you will become all the more richer and blessed for the experience.
Where to from here…
It’s 28 years since my diagnosis, I am now 57 – well over the age when ‘normal’ menopause happens. I have friends going through it, struggling with emotional ups and downs, hot flushes, anxiety, sleepless nights. None of them are opting for HRT, and are surprised that I've been on it for so long. But I’m completely ok with that. I don’t need to get validation from anyone for my choices. My situation is very different.
I have no intention of coming off HRT and in fact research now shows that it would negatively impact me to do so. I have no adverse effects from it, in fact the opposite – it gives me quality of life and I do have to consider my ongoing bone and heart health. It’s keeping me ‘normal’. I have no menopause symptoms and even though I have osteoporosis in my spine and osteopenia in my hips my bones are holding their own and not deteriorating. My heart is healthy and I have great blood pressure and cholesterol.
I take a once-a-month prescribed Vitamin D capsule, get out in the sunshine every chance I can and exercise regularly – power walking and Pilates.
I’m 57 but still feel in my 30’s (although I don’t have the energy levels I had back then). In my mind I am fit, strong and healthy, and I intend to stay that way!
My advice to any woman finding herself in a similar situation – research, research, research. Do what is right for YOU. Reach out to the communities listed below, to people who understand. Grieve, be angry, be inconsolably sad, BUT don’t let it consume you for too long. Life is short. THERE ARE OPTIONS…and believe me when I say – treasures DO await you, if you are prepared to look.
I am currently working on my memoir, covering the first 18 year journey from first diagnosis…a journey of many twists and turns, a journey of huge growth, a journey of immense gratitude and love. I want to share that with you, so that you can have the knowledge and hope that life can be magical…with or without children and that your body will not decay overnight just because you have gone into menopause too early.
Please reach out to me if you have any questions or want to talk to someone that understands, or if you wish to be on my database to know as soon as my book is published – exciting!! Here’s the link to subscribe.
I wish you blessings and strength on your journey…
Websites of interest in relation to early menopause (or menopause in general):
Websites of interest in relation to helping children (especially girls) in third world countries: