Grace Kelly, 39, Cork

Grace Kelly was just 28 years old when she was diagnosed with Primary Ovarian Insufficiency (POI), also known as premature ovarian failure, and told her dreams of having a family were effectively over.

Newly married, Grace was absolutely devastated. There had been no indication anything was amiss until she came off the pill ready to start trying for a baby, and her cycle did not return.

She says: “Children to me was the most important thing, all I’d ever wanted. You always fear you will have issues but you don’t expect it either, it was a massive blow.

“Looking back now I wonder if my mood swings, anxiety and difficulties concentrating were all linked to my diagnosis, but at the time I didn’t connect the two.”

Grace was referred to fertility specialists to see if there was anything that could be done and she was told the only option would be donor eggs, though they did start tracking her menstrual cycle.

Miraculously it worked and Grace fell pregnant, but an early scan showed the heartbeat was slow and Grace was told the pregnancy wouldn’t be viable due to the quality of her eggs.

“Losing the baby was nearly worse than the diagnosis. I felt that this had been my only chance and it was never going to happen for me now,” she admits.

Look for help

The couple decided they would try and have their family using a donor. While they waited to start, Grace sought help from a naturopath in a bid to try and improve the health of any remaining eggs. Against all the odds, she managed to conceive again.

Miraculously, Grace went on to have two healthy pregnancies and is now a mum to two beautiful daughters.

However, like many women diagnosed with POI, Grace admits her focus on having a family led to the implications of her POI diagnosis and impending menopausal symptoms being completely overlooked.

She says: “I was diagnosed while living in Sydney and when I came home to Ireland every doctor I saw just congratulated me on managing to have kids at all.

“There was no mention of what my diagnosis meant or checking my oestrogen levels, monitoring to see if I needed medication, my heart health, my bone health, my brain health... all the implications of premature ovarian failure and menopausal side effects for a woman of my age.”

Grace’s blood tests after having children clearly showed she was now post-menopausal. As her symptoms grew worse and still with no treatment on the horizon, she began trying to seek help.

“My anxiety had gotten very bad. I had to phone my husband one day so he could come home and mind the kids because I wanted to go to the GP right that minute so she could see my current state,” she admits.

“That was a big thing for me. I didn’t experience symptoms like the sweats and flushes, but my anxiety was out of hand. I had everything I wanted but was so fearful and afraid. I couldn’t live like that anymore.

“For two years I was left trying to find treatment with no real answers. One doctor wanted to first treat me with me an antidepressant for nerve pain, despite my low oestrogen levels.

“It took me so long to get treatment that my doctor now tells me there is no way to tell if any long-term damage has been done due to my lack of oestrogen in that time. That is a big fear.”

According to Grace, women need to be their own advocate when it comes to their health.

“That is one of the biggest problems women have: we simply accept the information we get from our doctors,” she says. “Even now I’m under the care of a great doctor, but it’s still a work in progress to get my treatment and levels right. It takes time.”

And the lack of support and awareness for young women experiencing the menopause is a huge barrier. “At 28, there was no information out there for me,” adds Grace. “There was no support group, there was no dedicated website for young women. I needed that.”

Never give up

However, while she is still learning to deal with the physical symptoms and implications of early menopause,

Grace’s story is ultimately one of hope. She recalls endless hours spent on the internet after she was diagnosed hoping to find someone who did have children against the odds.

“I really want to be able to give hope to someone out there” she says. “I remember googling every night, trying to find anyone who managed to have a family. I needed to know it could happen because every doctor told me it wouldn’t happen.

“But you do read about women having spontaneous pregnancies as they are going through ‘the change’ and I was one of those women.”

She also urges other young women – who don’t consider their hormones as something to worry about until it is time to have babies or when they’re older – to proactively educate themselves. “I would like young women to be aware of what a normal menstrual cycle is and if they have abnormal cycles to seek medical help from a doctor with an interest in women’s health.”

“In a sense I was lucky I was diagnosed when I was 28, I don’t think I would have managed to have my girls if I’d been older,” admits Grace. “But if women arm themselves with the knowledge early they might have options like freezing their eggs if there are signs they will need it.”

My anxiety was out of hand. I was so fearful and afraid