Like so many other women, when Julianne Hough was a teenager, she assumed her painful period cramps were normal. “I just dealt with the pain and ignored it all,” Hough tells SELF. It wasn’t until she was 20, when she found herself doubled over in pain one day on the set of Dancing With the Stars, that she went to a doctor to figure out what was going on.
After seeing a few different types of specialists, a gynecologist finally told her she had a condition called endometriosis. Hough had heard of it before—“when I was 18, I moved in with a roommate and she was always in so much pain [during her period]. She told me that she had endometriosis,” Hough recalls. “She told me what it was and the symptoms and how she felt, and I thought, ‘That kind of sounds familiar,’ but I didn’t feel like I had as much pain as she did.”
Now, the professional dancer is the face of "Get in the Know about ME in EndoMEtriosis," a national campaign aimed at spreading awareness of the condition. Hough is sharing her story in hopes that it will empower other women who think they're suffering from endometriosis to speak up and seek a proper diagnosis.
Endometriosis is a condition that can cause heavy periods, agonizing pain, and issues with infertility, among other symptoms.
With endometriosis, the tissue that is supposed to grow inside a woman's uterus (endometrium) grows elsewhere in her body, such as in the ovaries or fallopian tubes. (However, many experts now think the tissue is similar to endometrium, but different because it can produce its own estrogen—you can read more about that here.) According to the Endometriosis Foundation of America, 1 in 10 girls and women in the U.S. suffer from endometriosis, though it's tough to put an exact number on it since it's very often misdiagnosed. It's typically extremely painful, especially during menstruation and sex. The intensity of pain ranges, but for some women, it can be so unbearable that they need to take opioids. And one of the biggest complications is infertility, though it's possible for women with the condition to conceive with treatment.
"Traditionally, we think of endometriosis as causing painful periods," Joy Brotherton, M.D., associate professor of ob/gyn and director of minimally invasive gynecologic surgery at Harbor-UCLA Medical Center, tells SELF. "But women can have pain even when they’re not on their period. A lot of women can have GI symptoms, like diarrhea and bloating, so they go down this path of seeing GI specialists who may not know about endometriosis," she explains. Because endometriosis is an internal disease, traditional scans like ultrasound usually can't spot it. The gold standard of diagnosis is laparoscopy, a procedure in which an instrument is inserted through a small incision to get a good look at abdominal and pelvic organs.
Since it is not easy to diagnose, Brotherton says that many women doubt their pain is caused by a medical condition. "A lot of women have seen multiple doctors and been told it's all in their head, and think they’re going crazy. And they’re not crazy, it’s a very difficult disease to diagnose and treat," she says.
Hough had minimally invasive laparoscopic surgery in 2008 to remove the scar tissue on her reproductive organs that was causing her pain.
"For me, it was something that I needed at that time,” she says. "It wasn’t too bad—it was a week of recovery." Brotherton notes that while surgery is the best option for some women, it's not always necessary, and doctors will try to limit surgeries if they can.
Hough says her surgery definitely helped, but she still has pain. “It’s still something that I live with and I treat it in different ways now,” she says. “I’ll run a hot bath. I also have this little red hot water bottle, I call it the boiling baby—I know, that sounds so bad—because I noticed when I would hold it I would start rocking it like a baby. And my dog is great heat, I just put her right here,” she says, pointing to her stomach.
Though Hough says she was a little scared to talk about her experience back in 2008, she’s glad she did because she was able to help other women get diagnosed.
“Once I started talking about it with my mom, we found out my sister had it and my mom had it,” says Hough. Though it’s still unknown what exactly causes endometriosis (retrograde menstruation, which you can read more about here, is the most common theory), experts think there might be a genetic predisposition because it tends to run in families. "I would say most of my patients who know about endometriosis know about it because they have a family member or friend who has suffered from it," Brotherton says.
She also says fans reached out to her, thanking her for talking about her struggle and saying they no longer felt so alone.
Hough hopes that by raising awareness about endometriosis, more women will recognize the symptoms and ask their doctors about it.
“I just hope people don’t have to sit in silence with the pain,” she says.
She admits that working as a professional dancer and having endometriosis wasn’t always pretty. “I remember being on photo shoots and I felt like I couldn’t tell anybody because I didn’t want to be that person who complained. That’s not in my DNA, I can’t complain,” she says. “But I finally realized that this is my body and I’m justified. We don’t have to be lying about what our pain is in order to be strong.” In fact, she says, being able to recognize when something is not right—knowing, trusting, and respecting your body—is a powerful display of strength.
This story originally appeared on Self.
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