I was diagnosed with premature menopause in January 2012.
I had moved to London the previous March after a 2 year stint working in Shanghai and I hadn't managed to navigate the NHS and get set up with a GP so I was seeing the GP at work. I consider myself fortunate that my diagnosis was quick, some women have spent months or even years being misdiagnosed or battling with their GP for tests to confirm what they already suspect themselves but the GP I was seeing ran tests very quickly.
My mother started menopause early, she was 40 but had already had 3 children and at the time she thought it was brought on by the stress of her divorce from my father. I was around 16 and I remember her talking to me about it, about being prescribed HRT to keep her healthy. Mostly I remember the relief my brothers and I felt when her erratic moods and bad temper subsided!
Because of Mum I'd always had it in the back of my mind that I would probably start menopause earlier but I honestly never gave it any further thought. I started menstruating at 13 and was as regular as clockwork from the get-go – a sure sign I was fertile, right?
In the UK the "normal" menopause occur at an average age of 51 – 52. Premature Menopause is defined as a total cessation of menses before the age of 40 and affects around 1 in 100 women. For women under 30 it's 1 in 1000 and under 20 it's 1 in 10,000.
Basically what that means is your ovaries have run out of eggs and are no longer responding to the hormone signals sent by your body. Premature Menopause, premature ovarian failure (POF) and Premature Ovarian Insufficiency (POI) are all used interchangeably and there's no internationally agreed wording. There are discreet differences between the 3 definitions. I think POI is probably the most optimistic of the three names, it suggests that not all hope is lost and that maybe things just aren't working properly and for some women this is the case. Some women experience fluctuations in ovarian function after diagnosis and can conceive using their own eggs but the numbers are low, between 5-10%.
Diagnosis is typically done using a series of blood tests that measures the follicle stimulating hormone (FSH and some doctors also measure the Lutenizing hormone (LH) as this is what triggers ovulation. A couple of tests are done usually about 4 weeks apart as the levels do fluctuate. The levels for both hormones will be elevated in POI
I went to see my GP thinking I could be pregnant. It was December and I hadn't had a period since October which for me was most unusual. I had taken pregnancy tests but they were all negative so seeing my GP seemed like a good idea.
I had married young at 24 and by 30 it was obvious to me that we were very different people who wanted vastly different things out of life. My first husband was ready to start a family straight away but I wanted to see the world, focus on a career and I figured I had years before I had to really think seriously about motherhood. So, we went our separate ways and I remember thinking at the time that I may not actually meet someone in time to have children. I also remember feeling okay about it.
2011 had been a stressful year for me, I was still new to London, settling in to a new city, I felt very far away from my family in Australia and things at work were always busy, it was promotion year for me. At the beginning of the year I met Chris, after my divorce a few years earlier and after a couple of not-so-serious relationships I felt ready for something more serious. By the middle of 2011 I was smitten, I knew Chris was a keeper - I was head over heels. We had talked about children from early on and agreed that while we didn't dislike them it was a big step and we weren't sure it was something we wanted. It was early days so we happily parked it.
We were spending Christmas in 2011 in South Africa, I was meeting Chris's family for the first time and seeing where he was from and I did not count on having to manage a health scare. My GP took my blood tests the day before we flew and we agreed I would come back to see her in the New Year for the results. I still hadn’t had a period so we were hoping that some time relaxing on holidays might be just what I needed.
When I returned to work in the New Year I made an appointment straight away. I don't remember feeling particularly worried about it, I think I was still convinced it was all stress related. Diagnosis is horrible, there is no "nice" way to receive the news and I remember feeling stunned when it was confirmed and I burst in to tears and didn't stop. I was on autopilot and got the tube and the train home, I called Chris to tell him and he said he'd meet me at home, I called my Mum in Sydney and woke her to tell her my news, she cried too. People talk about feeling numb when they get bad news and that's exactly how I felt.
My doctor referred me on to a consultant who specialised in POI immediately and I saw him the next day. He ran another series of blood tests and did an ultrasound to take a look at my ovaries which were tiny. He referred me to have a DEXA scan to check my bones. Osteoporosis is a side effect of POI, women need oestrogen for bone health. I was put on HRT immediately (finding the right HRT is a whole other "journey" that is literally filled with blood, sweat and tears!). I was also referred to a fertility clinic to discuss our options and that was tough. We were less than 12 months in a relationship and here we were having to think about the mechanics of starting a family.
As it turns out it's almost impossible to harvest any eggs from women with my condition. There are so few eggs to begin with and generally what is left is of poor quality. Even if it were possible, freezing my eggs wasn't really a viable option either, the chances that I would conceive using my own frozen eggs was around 1%. We knew we didn't want to start a family there and then so that meant our options included either donor eggs or adoption if we decided we wanted children in the future.
Explaining to people the grief one feels after the loss of fertility is complicated. I didn't lose a baby as women do through miscarriage. It's a grief for all the possibilities, for the relationships that I'll never get to be a part of. I will never be able to stand in a park with my brothers and watch my children play with his children. I will never get to be a part of a grandparent–parent–child relationship with my mum and dad and when my husband and I are gone there will be no trace of us in the features of grandchildren and great-grandchildren.
For a few years after my diagnosis I felt completely betrayed by my body and I connected my loss of fertility with a loss of femininity, of womanhood – I felt like I'd been kicked out of the sisterhood and it hurt. I felt such sadness and rage that my choices had been taken away from me and I felt disconnected from other women, both those who planned to have children in the future and those who chose to be childfree. I felt confronted by my own mortality, in what other ways was my body going to let me down.
All this being said, I have reached a place of acceptance. I suspect that my husband and I would have chosen to be child-free even if I had not started menopause early, we'll never know though, but I do know that door is closed. We don't have the heart for adoption and egg donation and these options are not some booby prize for biological children but we both agree neither option is for us.
I'm at an age now where lots of my friends are having babies and I do feel the occasional pang but I am genuinely thrilled and terrified for them in equal measure! I no longer feel disconnected from other women, there are lots of things people can connect over and parenthood is only one dimension.
I don't have children, my body doesn't always behave as it should but these are not the things that define me.