‘I entered menopause before my mother’

Imagine that you are in your teens or 20s and discover that you are already in menopause. This is not what Emma, ​​Soe-Myat and Elspeth imagined would happen in early adulthood.

The diagnosis was the beginning of a lonely journey to learn about a life event that all women experience as they age, but which is little discussed.

It was an August morning in 2013 when a doctor told Emma Delaney that she was going through menopause at age 25.

Emma was sitting motionless in the hospital chair, her mind wandering back and forth over what he was saying. Her period, which had not returned since she had stopped taking the pill a few years earlier, would probably never return. It was unlikely that she would be able to have children naturally.

“I didn’t know how to react… He told me he couldn’t have kids, like he was saying I lost the keys,” she says.

Emma is one of a group of women with a condition called premature ovarian failure (POI) — which refers to any form of menopause before age 40. Most of the time, there is no known cause, and women with POI may experience menopausal symptoms well into their 50s.

Around one in 100 women in the UK are affected by the condition, and experts believe it could be more common than that. But it is a subject that remains little discussed.

“There’s not enough talk about menopause in younger age groups,” says Nighat Arif, an NHS general practitioner and TikTok star with a special interest in menopause care.

“Usually you see an older, white, gray-haired woman waving a fan. It’s not representative.”

For some women like Emma, ​​it’s not clear why their ovaries aren’t working, but IOP can also be caused by autoimmune conditions, chromosomal disorders, surgery on the uterus or ovaries.

In addition to the physical consequences, the psychological impact of such a diagnosis can be devastating. After the doctor broke the news to Emma, ​​she cried alone in the car for an hour.

Emma knew next to nothing about menopause, other than what she had heard from older women in the busy Manchester beauty salon where she works. The future she had envisioned — having and raising two children — had been taken from her.

Over the next few months, Emma was put on hormone replacement therapy (HRT). She found that because her ovaries stopped working, her body wasn’t producing enough estrogen and progesterone — the hormones that regulate the menstrual cycle. The imbalance had been affecting her health for years.

The mental fog she kept feeling wasn’t just part of her personality, she realized. The hot flashes that felt like fireworks going off all over her body weren’t caused by the long hours with the hair dryer. And her sleepless nights weren’t due to insomnia—they were another symptom of hormonal imbalance.

It didn’t help that her own mother, then just 40, hadn’t yet reached menopause. Friends of hers were starting to get married and have kids.

“It felt like nobody understood me,” she says.

Emma dove headlong into work and avoided discussing her diagnosis. She filled her nights with ballads and casual encounters — she wanted to be the exact opposite of her friends with mates and babies.

“I abused my body with alcohol and sex… I didn’t realize how much I needed to talk about it with someone,” she says.

If going through menopause prematurely wasn’t difficult enough, for an increasing number of women the diagnosis comes after they have started treatment for serious illnesses.

For Soe-Myat Noe, a graphic design student in London, menopause came as an unexpected consequence of cancer treatment. Earlier this year, aged just 23, she was diagnosed with stage three bowel cancer. Radiation to her pelvic area damaged her ovaries, but at the time she didn’t understand what that would mean.

“They [médicos e enfermeiras] they were just focused on my cancer and my cancer treatment… I don’t think anyone mentioned to me what menopause entailed,” she says.

Her symptoms — which included ringing in her ears, anxiety and fatigue — came on suddenly and were severe. Conversations about periods, fertility and menopause were not common when Soe-Myat was growing up, so she didn’t know what to expect. University friends, concerned about the IUD and the birth control pill, could not identify with her experience.

“Everything that was happening to me, I always associated with older people… I felt like I had skipped a whole chunk of my life.”

Although Soe-Myat was able to discuss her mental health with a therapist, her physical menopausal symptoms had not been considered. She had to fend for herself, Googling treatments while exhausted from chemotherapy and dealing with an ostomy bag.

While hormone replacement therapy (HRT) may be unsuitable for women with certain cancers, there was a form that was safe for Soe-Myat — and once she started, her symptoms improved.

Since then, she has been released. In addition to continuing HRT, she does things on her own, like going for walks and avoiding hot drinks to help herself. But she would have liked to have been given advice on how to deal with her symptoms earlier in the process.

“It shouldn’t be so hard,” she says.

Doctor Nighat Arif’s social media profiles are filled with messages from women who have had similar experiences. She calls for a “better understanding of the nuances” of menopause care among health professionals, and wants women of all ages to “break the taboo” around her.

“Please talk to the women in your life…have this talk with your mother, your grandmother, your aunts, your cousins, your best friend. There’s nothing to be ashamed of — learn from what they’re going through.”

Arif says that more women are now being diagnosed with POI because of an increased awareness of symptoms, but it can still take a long time for them to get a diagnosis. And if left untreated, IOP can have long-term consequences for women’s bones, heart, and mental health.

“Some patients may find themselves in the dark,” she says.

“They may want to have children, and that undermines the life choices they thought they could make.”

In his clinic, Arif also sees other rarely discussed consequences of IOP—such as painful sex and loss of libido.

Elspeth Wilson, 23, understands this all too well. She was diagnosed with Premature Ovarian Failure (POI) when she was just 15 years old. And difficulty with sex is an obstacle she faced throughout her sex life.

“It’s so hard to be in a relationship with someone and want to show them that you love them. But your body just won’t go along with it, and certain things are uncomfortable,” she says.

“What frustrates me is that the doctors never said this could be a problem.”

Elspeth has just landed her first job out of university as a market researcher in Newcastle. While she praises her employer for supporting her, going through this major transition with IOP can be complex.

“It contributes to imposter syndrome. There will be times when I will have mental fog, and that will happen at the worst time.”

She found comfort in a WhatsApp group of other women in a similar situation. In group chat, nothing is out of the question.

“It’s comforting to just have that space to ask those questions and vent… If you have the ability to talk about it in a way that doesn’t have an ounce of shame, it’s so much easier.”

Soe-Myat, who joined an online support group for young women with cancer-induced menopause, agrees.

“I felt validated,” she says.

It’s a lesson Emma has also learned over time.

After years of trying to block out the pain of her diagnosis, Emma finally started talking about her experiences more openly. She started by explaining her feelings to a therapist, who helped her feel more like herself again.

“No matter my diagnosis, I was still me… I was bigger than my diagnosis… That was a big lesson I learned.”

A few years ago, she met a partner who understands her condition, and they now live together.

On Instagram, she followed menopause-related hashtags and founded the Daisy Network, a charity created to provide information and support to women with POI. For the first time, she spoke with others who understood what she was going through.

Now 34, she thinks her future could include children. Egg donation and IVF would be very disruptive, she says. So she is thinking about adopting in the next few years.

And, every now and then, she wears a black T-shirt to the salon with the slogan “Make Menopause Matter” (“Make menopause matter”, in free translation) written on the chest in red. It is covered in stains from being splashed with bleach.

Her clients will comment that she’s too young to be going through menopause, and she’ll explain her situation while touching up their roots.

“They tell me they learned more about menopause in the 30 minutes they spent with me than they did in their entire lives.”

“I’m proud to be bringing information to all women.”