Bindi Irwin, Olivia Culpo and Chrissy Teigen Suffer from Endometriosis — an Expert Explains the Condition

Last month Bindi Irwin revealed on social media that she’d been suffering “insurmountable fatigue, pain and nausea” for a decade before being diagnosed with endometriosis, a condition in which uterine tissue grows outside of the uterus, causing cramping and chronic pain.

On average women in the United States suffer 10 years with the disease before receiving a proper diagnosis sand treatment. Chrissy Teigen, model Olivia Culpo and Julianne Hough are also among the 6.5 million women in the U.S. who are affected by the disease.

Endometriosis — which can be difficult to diagnose — is most often seen in women between the ages of 30 and 40, but it can appear in teens and women in their 20s, says Dr. Mary Jane Minkin, a board-certified OB/GYN at Yale University School of Medicine and member of the PEOPLE Health squad, who answered questions about the condition.

What are the symptoms of endometriosis?

The tissue can plant itself in all sorts of places outside of the uterus, causing heavier periods, pain in the bladder, pelvis and all over the belly, pain during intercourse — particularly with deep penetration. Oftentimes these women will get heavier periods as well. And it is a cause of infertility.

Why are women sometimes not diagnosed?

Endometriosis is very common actually, and that surprises most people. There are estimates that 10% of women can be diagnosed with endometriosis. But sometimes it’s not obvious to a doctor. You may not feel any masses in the pelvis when you examine a woman. An ultrasound may not show it either. Sometimes you need to go into the belly and look with diagnostic laparoscopy. And the amount of pain women have does not correlate exactly with the amount of disease they have. I’ve taken out endometriomas the size of a football, and the woman had no pain.

Is it becoming more common among younger women?

Younger women sometimes figure, “Oh, endometriosis for older ladies.” And the classic case is a 30 or 40 year old woman. But indeed, teenagers can get it. For years younger women weren’t being diagnosed. We’re simply recognizing it and getting active about treating them.

How can endometriosis be treated?

There are a lot of medicines now to treat endometriosis. Many medicines induce a menopausal state because menopause is the best cure. Birth control pills can also stop cramps. And surgery is one of the ways that we treat it. During a laparoscopy, we can cauterize the tissue or take out cysts to take care of the pain. But when you stop treating it, it can sometimes come back. After several operations some women will have had enough and will just ask for a hysterectomy, but that’s drastic.

What might increase your chances of having endometriosis?

There is a genetic tendency, to be sure. And a woman who is 40 years old and hasn’t had a pregnancy has a higher chance of having endometriosis than someone in their 20s who has been pregnant.

What should women do if they have symptoms?

If you go on birth control pills and take Aleve or Motrin and still have cramps, don’t be afraid to go to the doctor. Tell them you’ve tried your pain relievers, you’re on the birth control pill and you’re still pretty miserable. Go to somebody who’s going to listen to you. This isn’t something you’re just obligated to put up with.