My story: early surgical menopause

Erin Dean experienced a surgical menopause aged 41 after having her ovaries removed.

Here, she shares her story – and her advice for other women in similar circumstances.

‘In my only appointment with the gynaecological surgeon before having my ovaries removed at the age of 41, I told her I was worried about the impact of going through an instant menopause.

‘She barely looked up as she replied: “You just don’t have periods anymore, it’s great.”

‘In one sense she was right, I don’t miss the inconvenience of my periods. But, as I suspected, I definitely do miss my hormones.

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Deciding to have surgery

‘I decided to have surgery to remove my ovaries and fallopian tubes after I found I was the carrier of the BRCA1 (breast cancer 1) gene.

‘This is a deeply unpleasant mutation which gives me an up to 90% chance of developing breast cancer and up to 60% chance of getting ovarian cancer.

‘I was tested for the gene after my younger sister was diagnosed with terminal breast cancer when five months pregnant.

‘Leah died at the age of 34 when her son was 18 months old. She never heard Seth call her mummy or take him to his first day at school. Listing all the things she has missed out on, and the ways we miss her, is impossible.

‘After finding out I had the same faulty copy of the gene I was keen to do anything to protect my health and hopefully avoid cancer.

‘I found the choice to have a double mastectomy, which would remove as much of my breast tissue as possible, very straightforward, and couldn’t wait for it to be done.

‘For this I had an incredible team of surgeons and specialist nurses, and – under national guidelines – I had to undergo a psychological assessment to check I had made the right decision.

‘There was excellent care before and after, and the breast reconstruction specialist nurses were always on the end of the phone if I ever needed help. I had this procedure done when I was 39 and felt mainly relief.

Preparing for an early surgical menopause

‘When it came to my ovary removal, I was referred to the gynaecological surgery team at a different hospital.

‘My care was absolutely fine, but just much more perfunctory – with the surgery seen as routine and not a big deal.

‘Throughout there was a sense that all women go through the menopause, so why would I be concerned about going through it a decade early?

‘But for me the instant and early loss of the hormones produced by my ovaries was very worrying.

‘While I have two children, and didn’t plan to have anymore, knowing that my fertility would abruptly end on that day felt very strange, and hard to accept. I felt it changed my identity, pushing me into a new phase of life I didn’t really feel ready for.

‘I also worried about the physical and emotional impact of menopause which, thanks to my job as a health journalist, I knew a bit about.

‘When I asked my surgeon if I would feel the same after my ovary removal as I do now, she was honest. “Not everyone does,” she said.

How talking helped process my feelings

‘The day before the surgery I felt wretched. I was surprised how strongly against it I felt, despite knowing I was lucky to have options that I wish my sister could have had.

‘I called the phone line of the gynaecological charity the Eve Appeal where a wonderful specialist nurse listened to my fears, let me cry and told me what I felt was completely normal. She had spoken to women diagnosed with ovarian cancer who still found the idea of ovary removal difficult.

‘Hearing someone say that was so profoundly helpful.

‘I always knew I would go through with the surgery; I want to be around to watch my children grow up and I knew it was the right choice for me.

‘But someone telling me the turmoil I felt was completely normal helped me enormously.

The day of my operation

‘On the day of the operation, when I was dropped off alone due to COVID-19 restrictions, the surgeon asked if there was anything I needed that she could help with.

‘I was last on the Friday surgical list, due to be discharged that night, and I asked if I could leave with some HRT.

‘While HRT may not be available for some women with a higher breast cancer risk, I had already had my mastectomy, and was told I could have it safely.

‘The guidance from the National Institute for Health and Care Excellence (NICE) recommends that women who have a BRCA mutation, have not had breast cancer and have had their ovaries removed, have HRT until the age of 51 or 52 – the average age for menopause in the UK.

‘My surgeon seemed surprised I was worried about accessing HRT promptly and said it was something I should go to the GP about. I said: “But what if menopausal symptoms kick in straight away this weekend?”

‘She listened to me and kindly came back before my operation with a pack of estrogen patches.

Starting HRT

‘I put my first patch on two days later as I felt pretty unwell and in pain after the surgery, and didn’t want to add menopausal symptoms into the mix.

‘Looking back, I think my experience has been much better than I feared before surgery. I have had virtually no menopausal symptoms, I do all the things I did before and I have never regretted my choice to have my ovaries removed.

‘The main aspect I have found challenging is one I hadn’t really considered. I have had chronic eczema and very dry skin my whole life, and going through the menopause has definitely worsened the condition.

‘While I knew my skin was never going to age well, I can feel and see that it has aged quite dramatically since I had the surgery two years ago.

‘Ageing is a privilege that too many women in my unlucky family were not offered but, occasionally, guiltily, I wish my skin looked different.

‘It is sore and fragile, and I wake in the night scratching, something that probably hasn’t happened since it was a child.

‘My bad skin also reacted to the estrogen patches, so I quite quickly moved over to taking estrogen oral tablets. I had a Mirena coil fitted during the surgery which provides me with the progesterone element of HRT for five years.

‘I have the option of seeing my surgeon every year or to check my HRT, and currently I’m on a relatively high dose of 3mg of estrogen a day.

Be informed and advocate for yourself: my advice to others

‘For someone else considering this surgery, I would say be informed and find out as much as you can before seeing your surgeon, as you probably won’t have many appointments with them.

‘Also ask about HRT and if it could be suitable for you, as I think my journey would have been very different if I hadn’t been able to take it.

‘And if you find it a difficult decision, know that you are not alone. It is a very personal decision, I feel I took the right option for me and I have never regretted it.’

Would you like to share your experience of perimenopause or menopause? Write to us at shareyourstory@balance-app.com