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'Meno TikTok' heats up as women seek better perimenopause info on social networks

Videos with the menopause hashtag have recorded more than a billion views on Tiktok, as some women say their doctors aren't providing the support they need.

Some say their doctors aren’t providing the support they need

A woman wearing denim sits outside looking at TikTok on her phone.
Women say they are turning to 'Meno TikTok' and other social media sites for information on perimenopause and menopause, in part because of difficulty finding that information from more traditional sources, including their doctors. ( Irina Shatilova/Shutterstock)

Tiktok wasn't the first place Lyla Miller thought to go to for information on menopause.

But because she's a 48-year old woman, when she signed up for an account to check out what her 13-year-old son was doing online, that's exactly what she found. 

"I guess just based on the videos that I watched, the algorithm started realizing that I was a middle aged woman and it started showing me videos of …  perimenopause and menopause influencers," she said.

And she was quickly drawn in by the platform.

"It's engaging. It's kind of got a sense of humour. So it was just an easy thing to use to learn little bits about menopause"

A woman with curly brown hair, wearing a patterned top, poses for a selfie.
Lyla Miller was introduced to TikTok by her teenage son, but soon discovered it was full of menopause content. (Submitted by Lyla Miller)

At that point in her life she was going through perimenopause and experiencing symptoms such as brain fog and irregular periods, but she felt she wasn't getting the support she needed from her doctor. 

"She was kind of like, 'Yeah, it's going to go how it goes. Lots of different things can happen to your body. Just buckle up for the ride.'"

But what she learned from the TikTok influencers she followed was that there were other options for her, specifically hormone replacement therapy. Armed with this information, she went back to her doctor and asked for a prescription for HRT, which her doctor gave her.

Miller is far from alone in turning to "Meno TikTok" and other social media sites for information on menopause, in part because of difficulty finding that information from more traditional sources, including their doctors. Videos with the menopause hashtag have recorded more than a billion views on TikTok. 

Amy Hamilton's experience was similar to Miller's.

She went into menopause at 44, and found that her doctor didn't offer any options to address her mood swings, decreased sex-drive and weight-gain. 

"Even my female doctor, who I love — I think she's a great doctor — I didn't really get any support. She didn't offer me hormones. She didn't talk to me about it," said Hamilton. 

"I guess that's why I thought, 'Oh, I can suffer through this, I can deal.'"

But eventually she turned to Facebook, where she joined a group where women would share information and offer advice with each other. 

That's how she connected with a naturopath and eventually a nurse practitioner who was able to prescribe her hormone treatment.

A woman smiles while posing for a portrait in a bright pink suit jacket.
Amanda Thebe is the author of Menopocalypse: How I Learned to Thrive During Menopause and How You Can Too. (Jennifer Rowsom Photography)

Who are the menopause influencers?

Facebook and Instagram are full of people sharing personal stories, fitness tips, and health advice.

Amanda Thebe is one of them.

The Toronto-based health and wellness coach is author of the book Menopocalypse: How I Learned to Thrive in Menopause and How You Can Too. 

She'd worked in the fitness industry for three decades and was aware that menopause was something "distinctly not spoken about."

So when she started experiencing symptoms of perimenopause at 42, she struggled to get answers about what was happening to her body.

It wasn't until she went to a routine gynecology appointment where she was told "you're not losing your mind; you're just losing your estrogen. This is perimenopause."

She was relieved but frustrated that she had this gap in her knowledge of the human body — something she felt she knew pretty well.  

"I just was angry, angry for myself and angry for other women. And so that sort of sent me down the rabbit hole of talking about menopause from a health and wellness perspective to my already established audience. And it was very well received"

She now has tens of thousands of followers on her social media channels including Facebook, Instagram and YouTube.

But not TikTok, which doesn't really appeal to her.

"I was like, I'm never going to dance for any of you … I just want to stay with my fun, irreverent but factual cause without having to wiggle my hips for you."

And her cause of eliminating stigma for people going through menopause was one she felt was better conveyed in words. 

"I said vagina out loud. I said menopause out loud … And I've seen this evolution happen on social media where women are now emboldened to be able to talk about it in such a positive way."

What do doctors think about 'Meno TikTok'? 

When it comes to getting medical advice on the internet, it's still "buyer beware, because there's a lot of information that is incorrect," said Dr. Wendy Wolfman, director of both the Menopause and the Premature Ovarian Insufficiency clinics at Mt. Sinai hospital and professor in the Department of Obstetrics and Gynecology at the University of Toronto. 

But overall she said she thinks it's a good thing that not only are women "more vociferous" when it comes to menopause, they are also "being listened to a little better."

Part of that is demographics, said Wolfman. 

"I think there are 10 million Canadian women over the age of 40 now. And so that makes up a significant portion of the population," she said.

"And also, we make up a larger proportion of the Canadian workforce. So we are contributing members to society who are very important. And it's important that we remain symptom free so we can contribute at a peak of our productive lives."

A woman with short brown hair is wearing a a tweed jacket and a purple blouse.
Dr. Wendy Wolfman, director of the Menopause and Ovarian Insufficiency clinics at Mt. Sinai Hospital and a professor at the University of Toronto, said it's 'buyer beware' on menopause TikTok because medical information you find online can't always be trusted. (Brenda Witmer/CBC)

She said when it comes to hormone replacement therapy, there's still a lot of misunderstanding and fear. 

"I'd like to debunk the idea that this is unsafe therapy."

For example, she said many women are still worried about dying of breast cancer on hormone therapy but recent studies have shown there's much less risk than previously thought.    

Still, hormone therapy isn't a miracle cure.

"It's not a panacea that treats everything and keeps you young forever," she said. 

But it can help with effects of menopause such as bone loss, hot flashes and sleep issues, plus some of the vaginal issues that women are reluctant to talk about, such as dryness and pain during sex. 

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Life after menopause

Because they are now on hormone therapy, both Hamilton and Miller said the menopause transition now feels more manageable, and they each credit social media and the connections they made there for helping them feel less alone in their experiences.

Hamilton said she has made peace to some degree with the effects menopause has had on her body, and now has more energy and less brain fog.

Miller, who has only recently hit menopause, said she's starting to think differently about a stage of life that she once looked upon with a mixture of dread and resignation, thanks in part to what she found online.  

"As a woman, there's all these hormonal changes you go through throughout your life, and they're all kind of framed as horrible and scary and things that we just have to suffer… because we're women. And so it's just another one of those things. I did get a lot of comfort from watching these social media videos, from people saying things like, 'It doesn't have to be so bad.'" 

ABOUT THE AUTHOR

Antonia Reed

Reporter/Editor

Antonia Reed is a Producer for CBC Radio based in Toronto.