Endometriosis affects far more women than you’d imagine, including many famous women. 1 in 10 women suffer from endometriosis and 176 million women worldwide have the disorder. However, very few have even heard of it, let alone know if they have it.
Endometriosis is a chronic disorder in which the cells similar to those that line the uterus, are found in other parts of the body. For some women, it can be extremely painful, whereas other sufferers may experience no symptoms at all.
Many famous women are leading this discussion, courageously sharing their personal battles with the disorder.
The actress and dancer first experienced symptoms of endometriosis at age 15, but unaware of the disorder, didn’t think anything of it.
"I thought that this was just the kind of pain you have when you’re on your period,” Hough, told PEOPLE. “For years, I was just thinking that was normal and never really talked about it.”
In 2008, she announced that she had been diagnosed with endometriosis after she was rushed to hospital from the set of Dancing with the Stars. She suffered from an ovarian cyst and underwent surgery.
She now works alongside AbbVie on their "Get in the Know About ME in EndoMEtriosis" campaign, encouraging women to speak openly about endometriosis.
"I don’t care about being private about this anymore because I really want the women that are going through debilitating pain to benefit from my story or this campaign.”
Whoopi Goldberg has been aware of her disorder for decades and didn’t realise how few people had heard of endometriosis.
“You know, and it occurred to me that if they didn’t know that there were hundreds of thousands [of] girls out there that don’t know,” she said in a speech at the 2009 Blossom Ball.
She is a long-time advocate for speaking out about endometriosis and making more people aware of it.
“Because if you don’t discuss it, many more women are going to find themselves unable to have children, or find themselves close to dying because it’s led to something else,” she said.
Writer, producer and star of hit series Girls, Lena Dunham has shared her struggle with endometriosis for a number of years and regularly posts about the condition on her Facebook and Instagram accounts. She has experienced symptoms since her first period however, she wasn’t diagnosed until she was filming the first season of Girls at age 25. Since being diagnosed she has expressed hope that her openness will help other women struggling with the condition.
“So many people who suffer will never have the resources I’ve had,” she said last April. “My job is to educate people, to try to change the pathetic lack of resources for endometriosis, but it’s also to seize this gift. I’ll be more useful that way.”
In the past year, she has undergone 5 surgeries to treat the condition.
“This disease is wily and unrelenting, and I’m really blessed to have a community, both online and IRL, who let me express how hard that is,” Dunham wrote for Lenny.
The actress is a huge advocate of raising awareness for endometriosis, but she also insists that the disorder should not define sufferers. When she was diagnosed with endometriosis, she was given what she described as a "half-assed diagnosis" where she was neither explained what the treatments were nor how the disease worked.
"When all you know is pain, you don't know that that is not normal. it is not a woman's lot to suffer, even if we've been raised that way," she said in 2011 at the Blossom Ball.
Suffering from endometriosis and polycystic ovarian syndrome, the actress struggled, for a number of years with falling pregnant.
“I was hiding what I was going through for so long, and I hear about so many women going through what I went through," she told PEOPLE. "If I’m open about it, hopefully it won’t be so taboo to talk about it.”
The actress, filmmaker and designer stresses the importance of seeking help if you are experiencing anything unusual.
“If you’re having very painful, heavy periods that are debilitating, even while you’re ovulating, that’s not normal and you should get it checked out immediately," she said.
The ex-radio host and Endometriosis Australia ambassador has spoken publicly about her battle to make people aware of the disorder. She was diagnosed when she was 17 and used the contraceptive pill to keep the pain at bay. While helping with the pain, it has not stopped the endometriosis which has steadily grown worse.
In an attempt to have children, Greig is now off the pill and so the pain is unbearable.
"I go into self-lockdown for 24 hours at the start of each cycle. I can't move. Every step I take I'm in severe pain. Ironically, it feels like I imagine childbirth to be like, which something endo might mean I never experience," she said.
The 21-year-old singer recently shared her struggle with endometriosis in a post on Twitter.
“Emo moment; but if any of you suffer from Endometriosis please know you aren’t alone. I know how excruciatingly painful it can be and how discouraging the disease can be. To feel like it’s gonna limit you because of how debilitating it is. To miss school and work, or even worse to GO and suffer through it anyway feeling like a prisoner in your own body. To maybe be worried about ‘never having kids,’ or dealing with crazy treatment suggestions," she writes.
When she was diagnosed with endometriosis it was a huge relief.
"Finding out that I have endo was the most bittersweet moment because it meant I wasn’t crazy! I wasn’t a ‘baby’! I had every right to be feeling like the world was caving in. But it was terrifying to find out," she wrote on Twitter.
Diagnosed at the age of 28, Jillian was told that pregnancy would likely be a problem for her.
"I was always told that fertility would/could be a problem for me. Why do I have this? I’ve heard everything from “You have too much caffeine in your body” to “It’s genetic” to “You need to be put on birth control pill," she said.
She is now the mother of two children, a daughter adopted from Haiti and a son carried by her partner Heidi Rhoades.
Singer, Monica recently opened up about her journey with endometriosis after being diagnosed in May of last year. Two weeks later she was undergoing an eight-hour procedure to remove a hernia along with endometriosis cysts and fibroids. She spoke out so other women suffering would not feel alone.
“My reason for sharing is because we, as women, are built to be warriors and we will ignore something that seems so simple that can be so complex,” she told PEOPLE.
“Your uterine health is very important. I spoke up about it so people out there who are going through the same thing know that they’re not alone.”
The TV host, model and author has been so outspoken about her disorder that she went on to be the co-founder of Endometriosis Foundation of America. Despite her education and privileged background, she had never heard of the disease when she was first diagnosed.
"Not only does endometriosis affect a woman’s fertility and physical health, but it’s devastating emotionally, says Lakshmi. “Nobody wants to talk about this stuff,” she says. “It’s an incredibly private subject for most women, and even more so for a teenage girl."
She was determined to change that for other young women and boost awareness of the disorder.
“I didn’t want the next generation of women to go through what I went through, to feel betrayed by their own bodies or to feel alone,” she says.