When Julianne Hough was diagnosed with endometriosis at age 20, she had mixed emotions. On one hand, the Dancing with the Stars champion was happy her pain actually had a name, but on the other hand, she was worried about being defined by the chronic condition. She recently opened up to FirstForWomen.com about what it's really like living with endometriosis, how she overcame her fears, and why she can't stay silent about the condition anymore.
"I just thought that it was regular period pains, and actually what it's like to be a woman," Hough said. Instead of seeking treatment, she'd keep telling herself things like, "I'm a tough cookie, I can just handle it, and I shouldn't speak up, I shouldn't say anything."
In reality, endometriosis pain is far from typical period pain. Endometriosis is a condition in which tissue that normally lines the inside of a woman's uterus instead grows outside of it. Although this displaced tissue acts like it normally would by breaking down and bleeding during a period, it has no way to exit the woman's body. It becomes trapped, which can lead to painful complications.
"My personal experience is that it felt like sharp, stabbing knives," Hough said. "I also felt it in my pelvic area. I'd call them 'episodes,' where all of a sudden, I would just hunch over [during] this cramping sensation. It would cramp for 30 seconds and then it would pass. Then, a few hours later, I'd feel that same sort of cramping sensation."
"For me, it happens all month long," she added. "It doesn't just happen during my period. It's definitely not fun to live with."
Hough is not alone. An estimated one in 10 women have endometriosis in the United States, according to the Endometriosis Foundation of America. Considering how brutally painful endometriosis can be, it's pretty shocking that it often takes up to 10 years for women to receive a diagnosis. In Hough's case, it took five years before she received hers.
"My model of what cramps looked like were from my sisters, and they had bad cramps, and so I thought I was just normal," she said. "Well, it turns out that two out of three of my sisters have endometriosis. So that's four: My mom, myself, and then two of my sisters, and that's just in my family."
In the last couple of years, Hough has moved her conversation about endometriosis from private family discussions to the public eye. Because she knows firsthand what it's like to have the condition affect her day-to-day life, she wants all other women who think they may have it to go to the doctor and get an earlier diagnosis — and hopefully, a better experience living with it.
Hough encourages any woman who wants to learn more about endometriosis to visit SpeakEndo.com. For those who have already been diagnosed, Hough wants them to know that they are not alone and that they have a powerful support system of other women. Anyone can search the hashtag #SpeakENDO on social media networks to hear personal stories straight from other women.
"I've been really vocal about it because I think right now, especially in the time that we're living in... this is just an amazing and an opportune time for women to be heard and to be understood," she said.
Currently, there is no cure for endometriosis. However, there are medical and surgical treatments that can help some women, based on their specific symptoms and what their doctors recommend for them. Hough said she's had a couple of surgeries since her diagnosis, and has also made a couple dietary changes — such as avoiding gluten and eating more avocado — to aid with endometriosis-related inflammation.
That said, it's still a day-to-day experience for her, and some days are more painful than others. But aside from medical assistance, the emotional support from her family, her doctor, and other women is a huge part of what helps her through the tough times. She also credits her "amazing" husband.
"I remember I had an episode when we first started dating, and he was like, 'Wow, what just happened?'" she said. "At first, I just told him that everything was OK and I just needed a minute. But then, I realized that by opening up to him, I was not only speaking up about my disease, but also allowing him to be there for me."
She added that he's been very supportive of her sharing her story to the public because he knows sharing it in her own circle has already helped other women so much. Now, using her unique platform as a public figure will hopefully help her reach as many women as possible. By building this community, she hopes not only to educate and empower women, but also help them become advocates for themselves and other women to get the health care they need.
"When women feel supported, we’re more likely to share our own stories," she said.