Ellie’s Story: Going Through a Teenage Menopause

Published: 2nd October 2020

When Ellie Waters was 14 years old, she was diagnosed with a soft tissue cancer that required intensive and lengthy treatment. The interventions saved her life, but they also stopped her ovaries working for good. With little menopause information or support from her medical team, Ellie found herself on a journey of self-discovery and empowerment.

Ellie’s Story

My story begins with just a small lump in my buttock that I thought would go away – even though it was clearly getting bigger. I then began having pain in my leg and severe constipation too, but never realised they were all connected. Eventually, when it was all too painful, I told my mum about it and we went to have my ‘abscess’ removed. When the doctors did this, they realised the lump was cancer and within a week I was a hospital inpatient, miles from home, having intensive chemotherapy. I was 14 years old.

At the time of my cancer diagnosis, myself and my family were, understandably, very focussed on that, and what I had to do to have the best possible chance of survival. The odds weren’t great – only 20% of people in my situation survive more than 5 years after their diagnosis.

After 18 months of chemotherapy, and radiotherapy to my pelvis – then 6 months to see what the long term effects would be – I was told that my ovaries and uterus had sustained permanent damage, resulting in me now being infertile and essentially in the menopause.

My oncologist didn’t talk to me at length about the menopause or what this would actually mean for me. It was mentioned as a small consequence of my cancer treatment and it didn’t sound as if it would have that much impact on me. She prescribed HRT for me (20 micrograms of an estrogen tablet) and I went away trusting I had what I needed to get on with my recovery.

The hard part of getting through my cancer treatment was over. At the time, I was just in survival mode. The idea of my infertility and menopause paled into significance compared with the relief of being alive. The only thing I knew about the menopause was that your periods stopped, which could only be a good thing, right?

Wrong. But it took me a while to realise this. Over the next two years, I became focussed on getting my normal life back, GCSEs and then A-levels took over. I was busy and eager to get everything back on track. It eventually took a global pandemic and nationwide lockdown to slow me down and make me see what was really going on in my body.

When A-levels were cancelled, and I stopped to take a breath, only then did I turn my attention to my body and ongoing recovery. I realised I had been struggling and ignoring symptoms for a while – assuming it was just my cancer recovery being a bit slow and problematic. With all the time I had on my hands during lockdown, I thought I may as well learn a bit more about the menopause.

Lockdown made me join the dots and realise I was menopausal, the tiredness, joint and muscle pains, vaginal atrophy – up until that point, I had assumed all these problems were hang overs from my cancer treatments years earlier. Even though I was having hot flushes and night sweats, I still hadn’t realised I was menopausal.

Somewhere in my mind a voice was saying, ‘but you’ve survived cancer, you shouldn’t complain, you’re lucky to be alive’. But then I thought, ‘I have to live in this body for the next however many years, I need to take control of it and get the help that I deserve’.

It was really empowering when I found Dr Newson and many others on social media, I listened to all the podcasts and educated myself about the menopause – it made me realise that this is an issue I was allowed to take action on. This realisation felt great, I thought, ‘wow, I have actually got an answer as to why my cancer recovery was not going the way I hoped. I don’t just have to put up with feeling like this. There is a way to treat it.’

After arranging to see Dr Newson, who significantly increased my dose of estrogen and changed it to patches, she added in the hormones progestogen and testosterone, and prescribed vaginal estrogen too. It felt great to see a doctor who knew so much about the menopause, she told me that younger women often need much higher amounts of estrogen and what other treatments were available to help my vaginal atrophy.

In only a few months, my symptoms are much better – my future seems a lot more hopeful than it did before. I feel very lucky to be where I am now, to have survived the cancer – we recently celebrated my ‘past-five-years’ mark. My perspective on life now helps me have a positive attitude towards my ongoing menopause. I had to learn all about the menopause myself and I now understand how it will affect my body in the future. I had to do this in order to seek out the help I desperately needed.

I feel concerned for other young women who might be going through what I did and I’m keen to raise awareness of surgical menopause, particularly for those going through cancer treatments, and the importance of getting on the right HRT. I try and get these messages out on my social media and other platforms, and I’m writing a booklet for young women and menopause, with Dr Newson, that will be published soon.

Ellie is now taking a year out to continue her recovery and improve her menopausal symptoms. She has a part time job in a nursing home and a place to study medicine at university next year. If you would like to follow Ellie on social media, her details are:

Instagram: @teamellie_blog

Listen to Ellie chat to Dr Louise Newson in this new podcast