‘I had that classic storyline in my head about how my life would pan out,” said Lili Hulac.
The 24-year-old, who lives in Melbourne and works as a real estate marketer, told Newsweek she imagined she would “meet someone, we’ll date, we’ll get married and then we’ll have a baby. I always felt I’d conceive really easily. I mean, who doesn’t? I’m a pretty maternal person. I used to be a pre-school teacher and I love kids.”
At the start of this year, however, Hulac received the “devastating” news that she had premature ovarian failure.
The condition, also known as primary ovarian insufficiency or POI, “is when a woman under 40 stops having menstrual periods for a year or longer. It affects only about 1 percent of women,” Dr. Janet Choi told Newsweek.
Choi, a reproductive endocrinologist who now works as chief medical officer of Progyny, explained that it can be related to chromosome changes or an autoimmune disease.
Its symptoms usually mirror those of the menopause, though it’s not the same as premature menopause, according to the National Library of Medicine’s MedlinePlus guide.
“Most women with POI cannot get pregnant naturally,” the Endocrine Society states on its website. “They often can carry a pregnancy but most need to use donor eggs.”
Hulac believes there should be more discussion about young people who are infertile—a group she calls an “invisible demographic.”
“It’s really hard to deal with,” she said. “I feel quite isolated as it’s not something that many people my age understand. I feel like many of my future plans have been stolen and my life is out of my control.”
As she deals with menopause-like symptoms such as anxiety, weight gain and depression, Hulac is also having regular egg retrieval procedures, in hopes an egg can be frozen for use later. She has had four rounds since January, but no success yet.
This is particularly frustrating because she first consulted a gynecologist about her symptoms four years ago when she was in Hong Kong. The London-born, Hong-Kong-raised girl traveled back to Hong Kong from her Australian boarding school during a university break, and went to a gynecologist appointment.
“The earliest warning sign was that my periods were super-irregular. I’d have a long cycle and then I’d not have a period for a month and have a short cycle the following month. I decided to seek a gynecologist’s opinion in January 2019.”
Hulac, then 19, was given several blood tests to check her hormone levels. An anti-müllerian hormone (AMH) test suggested that she had a poor ovarian reserve, but the significance of this was not properly explained.
An email from the doctor’s office told her to consider egg freezing, but there was no sense of urgency. “My parents and I were pretty distressed to get this news via email and it wasn’t possible to reach anybody at the clinic. It caused so much stress and confusion.”
Hulac pushed for a follow-up consultation. She was not formally diagnosed with a fertility problem, however, and was left with the impression that she would still be able to conceive.
“The doctor mentioned that egg freezing might be advised in the future, but at no point was I told that the levels can decline drastically at a rapid rate until egg collection is no longer an option,” Hulac said.
“I left the appointment knowing that I would need IVF to get pregnant, but that there was no time pressure on my egg collection.”
It was only later that she learnt her AMH level was closer to the average for a woman over 40.
Hulac’s periods grew more irregular and, in April 2022, she requested a new AMH test. By this point, her AMH level had dropped to 0.15 Nanograms per milliliter (Ng/ML). The average for a woman in her twenties is between 5.13 and 3.87 Ng/ML.
“I got given these results over the telephone and cried,” she said. “But again, the doctor did not explain what this level meant and did not mention egg freezing. They only remarked that it indicates a woman going through menopause and the situation has now become dire.”
By this point, she was already considered an “unsuitable candidate” for retrieval but she decided that she had to try.
“Most IVF clinics cut patients off at the AMH of 0.65,” she said. “My levels were already abysmal for my age two years ago but, at 0.65, I might have stood a chance had the urgency of this been pointed out to me.”
Hulac often wonders what might have been if she had started egg freezing at 19 or 20. She plans to keep trying, however, and has put off the hormone replacement therapy usually prescribed to provide the estrogen and other hormones her ovaries are not producing.
In the future, she might have to deal with other health risks associated with low estrogen, which include osteoporosis and cardiovascular disease.
For the moment, it’s the loss of her carefree twenties that hits hardest. “I wanted to meet someone and naturally have a baby,” she said. Hulac is single but does worry that her fertility problem could put off a prospective partner. She said: “I’m single at the moment, so it’s also stressful having to think about, you know, what it would be like when I am dating somebody. Like when I do have another boyfriend or partner or husband.
“Obviously, I have to tell them. You’d hope that it wouldn’t affect your relationship, but of course it does because it’s a lot to to think about. It’s weird how much we as humans want to pass on our own genetics and start a family.”
“I also find it quite difficult to connect with my friends,” she added. “They’re amazing, but they don’t really understand my condition. I mean, how could they? It’s never talked about. I sometimes feel like what I’ve been through gets invalidated. Australians are so optimistic, and living here so many people just tell me that I can adopt.”
Adoption is wonderful, she said, but she finds those remarks insensitive. “It’s implying that I’m selfish for not wanting to do that, which I never even said that I don’t want to.”
She describes herself as “one of the lucky ones,” though, because she has her diagnosis and a shot at egg freezing. Others don’t.
“Some women get diagnosed even younger than me—teenagers even. I feel for them because they can’t even try egg freezing,” she said.
Lili urges other women to go and get checked. She said: “If I could go back to my 19-year-old self, I would just say to her as I say to all my friends, you need to take all of this really, really seriously. If something does not feel right, you should investigate it because best case scenario you were being a hypochondriac, and worst case scenario, it’s something like this. So, I just say to all my friends, please go to the gynecologist, get checkups, all of that. Just be really aware and conscious. Of all of it.”
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