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Actress, dancer, and Dancing with the Stars judge Julianne Hough opens up about life with endometriosis, from her late diagnosis and initial fears to deciding to speak up about her journey in order to help other women in pain. She's currently raising awareness for the chronic disease as part of the "Get in the Know About ME in EndoMEtriosis" campaign, which aims to educate and empower women by teaching them how to identify and address symptoms of endometriosis with a doctor.

Samantha Simon
Sep 15, 2017 @ 10:00 am

A lot ran through my mind when I was first diagnosed with endometriosis. If I'm being completely honest, the first thing that crossed my mind was, “Oh my god, I'm not gonna have babies!" Then it settled in and I thought, “Woah, this is a disease. I have something that's just not normal, and not everybody has it. What is this, and what do I do now?”

From there, I slowly learned and figured it out. Nothing changed too dramatically, but I had peace of mind in knowing that there is a name to what I had, and knowing that I didn’t have to necessarily stay as strong and ignore it like I did in the past. When I was younger, I just thought, “Man, this sucks. But I'm a woman now and I'm having my period and these are just normal cramps. This is what women go through.” I didn't want to complain or be the person who’s obnoxious with self-pity and all that stuff. No pity party in the corner over here. So, thinking it was normal, I ignored it.

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When I was 18, I moved to L.A. My roommate would be hunched over in the bathroom and in so much pain, and she told me she had this thing called endometriosis. I thought, “That sounds like me and that’s how I feel, but I don't want to make a big deal out of it. The word endometriosis is way too complicated and too long, and it sounds too medical and I'm too scared of it.” So for a few more years, I just dealt with it. Then I was on Dancing with the Stars—I think it was around season seven, which is a long time ago now—and I would have what I called “episodes” when I was dancing. I had a big episode and my mom was like, “What's going on with you? I'm taking you to the doctor. This is not okay.” Even I thought it was weird and way too much.

It took me three days to get a proper diagnosis. I had obviously talked to doctors about it in the past, but for most women it takes six to ten years to even get a proper diagnosis. I was lucky that it took only three days, but I was seeing a couple of doctors at a time each day. It was quick and crazy. When I found out, I chose to have surgery, which isn't recommended for everybody. But I needed it for myself. I decided not to really talk about it in too much detail, because it’s super personal. It's women stuff, and I thought people would feel uncomfortable or I would feel uncomfortable if I brought it up. Then I realized that this is life, and one in ten women have this. It’s way more common than people think, and if I don't say something about it, other women are just going to feel like they don't want to complain or look weak either.

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It feels so much better to know that there's a name to your pain and that you're not just being weak or in your own head. I keep saying the word “weak,” because I think that's sometimes a pressure that women put on themselves. We often write off complaints, and for me, I didn’t want to complain because I’m a dancer and I’m really strong. Nobody can tell me “no.” I danced with shingles and tonsillitis and a sprained ankle, and I was not going to let this hurt me. But at the same time, it was so frustrating because I was like “Man, I feel like this is way worse than just cramps.” You can feel the difference. I know what cramps feel like—and those suck too, by the way. But this is a different sensation of pain and it's more instantaneous and shocking. Sure, it’s kind of weird when you're talking and all of a sudden you're like, “Uggghh, hang on a second!” It freaks people out sometimes. But that's where being able to talk about it and being open about it is so key. Just knowing that you don't have to be that strong, that you can actually just take a second, and that the people around you know that as well, is important. I knew I had to talk about it.

The most common thing that I've heard from other women has come through direct messages on Instagram and comments on things that I've posted, and that’s “Man, this sounds like me. I feel like now I don't feel bad for feeling or questioning my pain.” As crazy as it is to come out and be like, “Hey guys, I've got endometriosis,” it's been so fulfilling just to know that I've helped people. And if it's only that one or two percentile, that's okay. Because at least somebody felt understood and heard.

With my stubborn attitude, things probably wouldn't have changed much if I had been diagnosed sooner, in all honesty. But it would have been nice to know that the information was out there and that I could have sought it out if I wanted it. There was no website for me to look at where I could just go through everything and think, “Oh, is that me?” The "Get in the Know About ME in EndoMEtriosis" campaign has that, and it's just about getting to know about “me" and endometriosis. It could be you, or it could be somebody that you know. But just being understood and heard is all that people really want in life. It's nice to know you're not alone and people get you. Ten years ago, I didn't have the kind of information that you can look up now. When I looked it up, I was like, “I still don't know what this is.” Now, there's a questionnaire that you can go through to see if you have the symptoms and then go to the doctor.

In terms of treatment itself, I'm an active person. So if I work out, put good foods in my body that won’t give me inflammation, and sweat it out to make my body actually physically warm, then those things help. I'm queen of the bathtub, and I have my little hot water bottle that looks like it’s from the 1940s—I call it my boiling baby because I literally sit there and I rock it, which is the weirdest thing. Those are my little tricks. My husband knows everything and he's not like, “What's going on, are you okay?” That's what he did at the beginning, but now, when he knows I'm going through one of my episodes, he just rubs my back. It’s nice just knowing that he understands what’s wrong and he's there without constantly asking if I’m okay.

Holy hot damn, my man is beyond my wildest dreams! 🌸🌸🌸 #mylove #datenight #creativeartsemmys

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I know that endometriosis can [affect fertility issues down the line,] but I don't focus on that. I think what's going to happen is going to happen—although I've heard that getting pregnant is actually good for it. That’s what my doctor tells me. He’s amazing, by the way—he performed my surgery, and I'm pretty sure he'll deliver my babies eventually. He really did his due diligence when I first went to him. He talked to my mom and sisters about their medical histories and their symptoms, and it turned out that a couple of my sisters and my mom have it, too. They didn’t know before then, and they got pregnant a lot—one of my sister has six kids, so maybe that was a period of time where she just thought everything was fine. When I got diagnosed, it helped them get diagnosed. And that's what this whole campaign is really about: getting in the know, and staying in the know.

—As told to Samantha Simon

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