Bindi Irwin is shining a light on this painful, underdiagnosed condition

Bindi Irwin is shining a light on this painful, underdiagnosed condition
March 8, 20235:24 PM ET
Manuela López Restrepo

One in 10 women or people with uteruses experience endometriosis during their reproductive years. To combat the ongoing stigma around it, Bindi Irwin has documented her surgery and called for people to “keep searching for answers.”

Who is she? Depending on how old you are, you might remember Bindi Irwin as the daughter of America’s favorite late Aussie TV show host, Steve Irwin (AKA the crocodile hunter).

• But she has since become a conservationist in her own right, continuing her family’s philanthropic efforts focused on nature, and starring in TV shows.
• Irwin is also married, and the mother of a baby girl named Grace. That comes into play with her diagnosis.

What’s the big deal? On Tuesday, Irwin shared social media posts detailing her decade-long battle with endometriosis, writing: “For 10yrs I’ve struggled with insurmountable fatigue, pain & nausea. Trying to remain a positive person & hide the pain has been a very long road.”

• Like many other women who live with chronic pain, Irwin recounts having her experience discounted by doctors, and chalked off as something she would just have to “deal with as a woman.”
• Endometriosis occurs when “tissue that is similar to the lining of the uterus grows in other places in your body,” according to the National Library of Medicine. Common symptoms of the disease can include very painful menstrual cramps, chronic pain, infertility and stomach (digestive) problems, among other things. While there are various theories, the underlying cause of endometriosis isn’t yet known.
• Linda Griffith, a top biological engineer at MIT, spoke with NPR in 2021 about having the condition herself; the somewhat mysterious factors behind the condition; and why it can be so painful.

What are people saying?
Bindi Irwin on her struggle with the condition:

Things may look fine on the outside looking in through the window of someone’s life; however, that is not always the case. Please be gentle & pause before asking me (or any woman) when we’ll be having more children. After all that my body has gone through, I feel tremendously grateful that we have our gorgeous daughter. She feels like our family’s miracle.
I’m aware of millions of women struggling with a similar story. There’s stigma around this awful disease. I’m sharing my story for anyone who reads this & is quietly dealing with pain & no answers. Let this be your validation that your pain is real & you deserve help. Keep searching for answers.

Linda Griffith about why so many overlook endometriosis:

Some women just don’t understand that other women could have these terrible, terrible things happening, because they themselves don’t experience those symptoms. “Period privilege,” as I’m calling it, could be active or passive. Passive is just they don’t think about it and they kind of find it hard to believe. But active — and I encountered this a lot — is women saying, “It can’t be that bad.” And some of these women are gynecologists, like the one who treated my niece who had endometriosis, and the gynecologist told my sister my niece was making everything up. 

So, what now?
Griffith’s research has focused on tissue regeneration, and she says understanding endometriosis could be key in furthering our understanding of it.

• Irwin has continued sharing and promoting endometriosis awareness as she recovers, receiving support from thousands across the globe. March is also endometriosis awareness month.
• Griffith, Irwin and countless others say stigma surrounding period pain and chronic conditions has got to go in order to make progress.
• Griffith: “There’s many period problems: Heavy menstrual bleeding, fibroids, all of these kinds of things. You just don’t talk about your period. So that has to change.”
• A U.K. trial for the first non-hormonal drug being aimed to treat endometriosis pain is showing promising results, The Guardian reports. It would be the first new class of drug for the condition in 40 years.