It’s not uncommon for some diseases to hold a certain level of stigma or secrecy with it, but there tends to be a bit more mystery surrounding endometriosis than most. Dubbed the invisible women’s health condition, those who suffer from it often stay silent about their condition, choosing to cope with the painful and complicated symptoms alone. However, considering that one in 10 women—176 million women worldwide, to be exact—suffer from endometriosis, the silence isn’t doing anyone any favors.
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Recently, quite a few prominent women have stepped forward to discuss the disease, raising awareness and opening the conversation for others who suffer from the condition. The disorder, in which the lining of the uterus is found growing outside of it, results in cysts and scar tissue on the uterus which can be agonizing for those who have it. In fact, the latest celebrity to open up about her experience with endometriosis, singer Halsey, claims to have had such excruciating pain from the condition that she’d often double over backstage during her concerts or faint from the severity of the pain.
After getting multiple surgical procedures to help relieve her from the symptoms, Halsey explained to fans that she’ll be “off the map” for a while, hashtagging her post #endowarrior, which has more than 72,000 posts thus far—proving yet again how common this disease really is.
Other celebrities like Lena Dunham have also opened up about the condition as well, with Dunham explaining in her Lenny Letter, “the stomachaches began quickly and were more severe than the mild-irritant cramps seemed to be for the blonde women in pink-hued Midol commercials. Those might as well have been ads for yogurt or the ocean, that’s how little they conveyed my experience of menstruating.”
But it’s not just the pain that makes this condition hard to deal with. The risk of infertility is higher in women with endometriosis, which can be a terrifying thought for women hoping to conceive a child one day.
“Yes, despite my diagnosis I still wanted to try and have a baby,” said actress Tia Mowry, who has endometriosis as well, in an interview with Parents. “But not being able to have kids was an immediate fear.”
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Ultimately, treatment for the condition varies. Hormonal birth control medication is typically the first step for alleviating symptoms, but more serious cases usually need surgery for real relief. Sadly, there is still no cure for endometriosis.
While it might seem futile for these celebrities to share insight into their personal struggle with endometriosis, it’s more important than you’d think. Sufferers can feel isolated and disheartened when fighting through the symptoms, but being well-informed on their medical care, as well as feeling support from peers can be one of the best ways to keep this condition manageable.
We’ve reached out to an expert for commentary on the condition and will update once we hear back.
