As we continue to have much-needed discussions around menopause after World Menopause Day (click here for our previous story), we’re looking at how early menopause can affect women. Nicole Evans was deeply shocked when she got her diagnosis.
Nicole Evans, an Aucklander who is now 47, was only 30 when she found out she was experiencing menopause. It was a huge blow.
“I was newly married. We’d just started thinking about starting a family. I was on the pill, then I missed two periods, which took me to the doctor thinking ‘maybe I’m pregnant’. And it was completely the opposite.”
Her GP did the necessary tests and referred her to a specialist who gently delivered the devastating diagnosis: premature menopause (sometimes called Premature Ovarian Insufficiency, or Premature Ovarian Failure).
Early menopause affects five percent of women under the age of 45. Premature menopause affects one percent of women under age 40. One in a thousand women experiencing premature menopause are under the age of 30. Nicole had no idea this was even a thing.
“The term menopause wasn’t actually used at first. I was told I had fluctuating ovarian function: a precursor to premature ovarian failure. I was in shock. So was my husband who held my hand throughout the appointment. I was only 30 years old. This couldn’t be happening. My mother went through menopause at age 50. There must be some mistake.
“I thought the specialist must be wrong, so I got a second and third opinion.” They said the same thing. “I spent hundreds of dollars on naturopathy to try and bring my periods back. It was, like, if anyone offers you a lifeline, you’re going to grab it.”
“All this was causing stress in my marriage because my husband was like, ‘you’ve been told three times now; what more do you need?’. But for me, it was grief. It took me a year to really go, ‘Wow, I’m not having my own biological children’. The choice had been taken away from me.”
How did she feel around others initially? “Embarrassed and ashamed.” Really? How did the people she told react? “Generally shocked, which is natural. I mean, I was shocked as well. It was so outside all of our realms of experience. You can psychologically and emotionally lose friends because they don’t ‘get it’. Some people said things like, ‘look at the positive,’ and, ‘oh, you won’t have to spend money on sanitary products anymore’.” Yep, not helpful. “You just come up with lines to shut the conversation down.”
Early in her journey with premature menopause, people she met would often ask if she had kids or if she wanted them. (To interject, think twice about asking that question, because people’s reasons can be deeply personal, from infertility to cancer.) “If I knew someone well enough, and trusted them, I sometimes told them a bit about it. If it was an inappropriate setting, I’d just say, ‘I can’t have kids’. Then you have to support that person in their awkwardness and extend grace to them, when you’re the one going through the trauma.”
She continues, “My husband was and is my rock. Right after the diagnosis, rather than focusing on the family we may never have, he thought of the spare time and money we’d have and said, ‘Well, we can go on that big overseas trip now, can’t we?’.” He made me smile amid my shock, fear and grief. I’m glad I was already married when I found out. I certainly doubted my qualifications as a wife as a result of this diagnosis. It was tied to who I was as a woman, as a wife, as a sexual partner, because I felt so broken. And when you get into fertility treatment, that takes it a step further [in feeling broken].”
Two friends each donated eggs to enable two rounds of IVF, but it didn’t work. Had Nicole always wanted children? “I basically wanted a baby, but thinking about it later, I actually didn’t know if I wanted a five, 10 or 15-year-old! It was a turning point in our fertility journey when the counsellor said ‘Let’s work through the grief – why is it that you want children?’ My husband and I just looked at each other. We couldn’t think of a reason to have children that we couldn’t fulfil by loving or investing in other people’s kids. You get to hand them back and don’t have to deal with the tantrums!”
Her husband saw it as ‘not meant to be,’ and Nicole came to feel that way, to an extent. “Because anything can happen to anyone, nobody’s exempt, we’re not promised an easy life or that we’ll come out unscathed.” That said, support is crucial. Nicole’s specialist recommended the NZ Early Menopause Support Group to her, and she joined within a few months of her diagnosis. “I found it very helpful. I could talk about all this stuff that no one else understood.”
The group was set up in 1998, when University of Auckland Professor Andrew Shelling – who was doing research in the field – asked study participants if they wanted to be put in touch with others experiencing early menopause. Some did. “I had advertised for participants at GPs’ offices and fertility clinics,” Dr Shelling tells Capsule, “so I was, to my surprise, getting phone calls from women all round the country who had recently been diagnosed. This was prior to people using email or the internet regularly. Women were desperate for information and support, and often their GPs weren’t very familiar with the condition. With the increasing use of email and the internet, we could provide information, and link women up. It wasn’t until the lovely, amazing Nicole came along that we had someone who could set up a website and provide valuable information.”
Nicole became the group’s coordinator in 2007, devoting many volunteer hours despite already having a full-time job. “This group has helped me in so many ways,” she says. “As I typed out emails to reply to women who had made their first contact, I almost felt like I was counselling myself. I’d think ‘man I should take this advice myself!’. It’s really good that I’ve been able to pour out my pain in a way that helps others.”
Currently, about 100 women are part of the email/newsletter database. A private group on Facebook has 47 members who can discuss questions, share tips and get general support, while the organisation’s Facebook page has 700-plus followers. Nicole can’t begin to count the number of women who have got in touch, but it’s in the hundreds.
Is anyone in the group aged 30 and under? “Yes. There are even some much younger women aged 20 and under, who were in their teens at diagnosis and who, understandably, don’t want to own it at that age, and who are put on the pill to feel normal among their peers.”
Should early menopause be talked about more? Nicole reckons that if you want to talk about it, great, but if you don’t, that should be respected. “It depends on the context because it is extremely traumatic psychologically. You’re one age chronologically, but you’re 50 in your head. I looked at myself in the mirror and thought ‘that’s not me anymore’. Something in me had split. Others have said the same thing.”
Would she like to see menopause seen less as a decline and more as a sort of ‘becoming’, like moving into a new stage of life? “That would be a great thing, because it’s going to happen to everyone [with ovaries]. We need to get more education out there because otherwise you’re battling something that’s inevitable.” Hell, maybe we could even start throwing menopause parties.
What would Nicole say to somebody experiencing early menopause? “That this doesn’t have to define you. You can still lead a great life, and detours can lead to good places, too. My other message to women is this: if you think something’s wrong with your body, find a doctor who takes you seriously, and advocate for yourself strongly. I was lucky that my GP listened to me, ordered blood tests and referred me to a specialist quickly. I later learned that by the time you can see the effects of ovarian failure, it’s already happened. But I’ve heard of women aged 30 or younger suffering for years with menopausal symptoms and GPs putting it down to just about anything except menopause. GPs are your gateway into healthcare, and if they don’t understand or even don’t believe you, you have to fight for yourself.”
How did she get to a place of acceptance? “Time does that. And the support group, helping others, and searching for the blessings in life have helped. I acknowledge the negatives, but focus on the positives. We only get one chance at this life and I intend to squeeze all the good I can out of it.”
For more information, please visit www.earlymenopause.org.nz