At the age of just 29 I was diagnosed as post menopausal… 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…
These are the words the specialist used the day I was told I had gone into early menopause. I was just 29 years old and I remember it like it was yesterday… that was it, no advice, no support, nothing.
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 around 47kg), my body went into this ‘survival mode’ and my periods stopped. I had no symptoms apart from no periods. After a few months I thought I had better get things checked out. Blood tests revealed I had gone into premature ovarian failure (or early menopause). Actually my FSH and LH levels showed I was post menopausal.
At that particular time in my life I was emotionally burdened by other events so the thought of not being able to have children didn’t really register. To be honest I thought the doctor was talking s**t… how can stress cause menopause? I’d never heard such a thing.
Research, reasons and relating…
After a time, I started doing some research on the internet and found a support group in the States (there was no support 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 50s, 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 it. A few years later I decided I wanted to try and have children. The specialist kept saying, “I’m not hopeful”, but put me on fertility drugs in any case. Then the real menopause symptoms kicked in—mad hot flushes, highly emotional; hell, what have I done!
The drugs weren’t working and I wanted further investigation so the specialist sent me for 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 only had one ovary; the left one was a “streak gonad” and had never developed. That was all the information I was given.
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 a 54-year-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. By this stage my mother had died so 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 got 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”.
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 over 20 years. The thing is, those of us who enter menopause early are a different kettle of fish than those entering menopause at the ‘usual’ age of 50 or so.
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. The HRT is only replacing the hormones our body is not producing, but should be producing at the usual age.
In reality, we are actually 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 decrease in bone density of 8%, because my body wasn’t absorbing the cream in enough of a dosage to help my bones. Epic fail—I was absolutely gutted!
For around the past eight years or so I’ve been on 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 totally hormone related).
Bio-identical HRT is still manufactured in a lab, but its chemical make up is the same as what your body makes. I’d rather be on something that is as identical as possible than something that is completely foreign to my body…
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 thought of deeply like a lot of women do. I decided donor egg or adoption wasn’t for me and that I would remain “child less”.
But it’s been hard over the years watching friends have children, then their children have children, and seeing 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.
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.
I trained as a Bowen therapist and massage therapist back in 2003-04 and that led me to beautiful connections with others—helping them ease their own pain physically and having an empathetic ear, someone to listen to. And I 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 of 2011, when I went to Bali for five months to meet a young 10 year old boy (Yogi) 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.
Yogi 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, connected, and fell in love.
I share that journey here at Follow Your Dreams.
I also now share the sponsorship of his sister Ari. They are my Bali family. Yogi is now 15 and Ari is 11 and they mean the world to me. I travel to Bali every year to see them. It’s always such a tears of joy reunion and a tears of heart break to leave, but we’re in each others lives for a reason and I know we’re in each others lives for a lifetime.
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 22 years since my diagnosis. I am now 51—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, so once again I’m ‘different’. 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’m now at the point where I need to decide to stay on HRT or come off it. Who knows what the long-term side effects are? BUT I do have to consider my quality of life. I do have to consider my bone and heart health.
Currently I have osteoporosis in my spine and osteopenia in my hips. This has been fluctuating for years. Two years ago my spine was decreasing and my hips increasing. My last bone density scan recently had my spine increasing and my hips decreasing—WTF? I’m actually doing nothing different—I’m on minimal dose HRT and high dose Vitamin D—that’s it!
I need to do something about my calcium as I don’t eat dairy, but to be honest, I’m over popping pills! I exercise regularly—mainly power walking these days, but will get back to lifting weights at some stage as this will also help hugely.
One thing is for certain—when (if) I come off HRT my bone density will get worse, that’s a given. And at this stage I don’t have any desire to go on bone density drugs—I’ve done the research, and I don’t like what I read.
So for now, maybe for another year or two, I’m going to keep with what I know. I’m going to stay on the HRT because it’s working for me. It’s keeping me ‘normal’. I have no menopause symptoms and my bones are holding their own. My heart is healthy and I have great blood pressure and cholesterol.
I’m 51 but still feel in my 30s (although 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!
At some point in the not too distant future I hope to publish a book about my journey. It’s a work in progress, so watch this space…
Please reach out to me if you have any questions or want to talk to someone that understands. Just use the Contact page on my website.
I wish you blessings and strength on your journey…
Websites of interest in relation to early menopause (or menopause in general):
Australasian Menopause Society
The Daisy Network
[CMomA additional link for our North American members]
North American Menopause Society
Websites of interest in relation to helping children (especially girls) in third world countries:
This story originally appeared on her SoulCuisine blog.