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  • Bindi Irwin is opening up on social media about her experience with endometriosis.
  • Endometriosis is a chronic condition that can cause women extreme pelvic pain and, sometimes, infertility.
  • It causes tissue similar to the uterine lining to grow outside of the uterus, which can have a long list of effects.

Bindi Irwin is the latest celebrity to help normalize conversations surrounding chronic illness and pain. The conservationist and daughter of the late Steve Irwin has been opening up on social media about her decade-long struggle with endometriosis.

Endometriosis is a chronic condition that can cause women extreme pelvic pain and, sometimes, infertility. It causes tissue similar to the uterine lining to grow outside of the uterus, which can have a long list of effects. According to the World Health Organization, it’s a condition that affects 10% of women and girls of reproductive age around the world.

On International Women’s Day, Irwin began tweeting about her journey with the illness, describing her years of pain and misdiagnosis.

Her message on Twitter read, “For 10 years I’ve struggled with insurmountable fatigue, pain, and nausea. A doctor told me it was simply something you deal with as a woman and I gave up entirely, trying to function through the pain.”

To hear that chronic pain is something people have to simply “live with” can be as painful emotionally as the physical pain itself. Having public figures speak out about their personal struggles helps to normalize the conversations and lets other people know that they are not alone.

For the women who live with endometriosis, Irwin’s message can validate their experiences or encourage them to seek help if needed.

Endometriosis is a chronic illness where tissue that is similar to the lining of the uterus grows outside of the uterus. While the effects of the disease impact women differently, it has the potential to cause severe pain during periods, sexual intercourse, bowel movements and urination, bloating, nausea, fatigue, and sometimes infertility.

“Endometriosis is very common. The problem is it is often difficult to diagnose,” said Dr. Jennifer Wu, an OB/GYN at Lenox Hill Hospital.

Doctors have several methods they can use to test for the disease, but it’s not always an easy condition to diagnose. Tests for physical clues of endometriosis include:

  • Pelvic exam
  • Ultrasound
  • MRI
  • Laparoscopy

“The other thing is the amount of the disease does not correlate with the amount of pain,” said Wu. “A patient may have a big collection and yet not feel pain. Other patients have severe pain, but we see nothing on radiology imaging [because it’s so small].”

Additionally, because you can have endometriosis on your bladder and intestines, the symptoms may not feel like it’s related to the uterus and ovaries. This can often lead to people being misdiagnosed, which can then result in going without proper treatment for a long period of time.

“The nerves that supply the gynecological organs also supply other organs. They don’t live in a box and are surrounded by other organs that all function and talk to each other,” said Dr. Catherine Chan, minimally invasive gynecologic surgeon within the NYU Langone Endometriosis Center, part of the Department of Obstetrics & Gynecology. “If you’re having pain, it can activate pain elsewhere.”

“Endometriosis causes a lot of inflammation and scar tissue. It can implant itself on the fallopian tubes. You need tubal movement to have the egg and sperm meet. If your tubes are scarred shut from scar tissue, you may have problems getting pregnant,” said Wu.

There are treatments for endometriosis although they are not always completely successful.

Once endometriosis is diagnosed, doctors have a few avenues they can take in order to help alleviate the symptoms. The treatment usually involves medication such as birth control or surgery. Doctors typically try to start with medication or less invasive treatments at first, with surgery as a last resort.

“Sometimes we treat endometriosis medically with things like birth control pills and progesterone IUDs. Oftentimes people will have pain with their cycle and with ovulation so if you suppress ovulation, it can help the pain. You can do surgery to alleviate the symptoms, as well. Sometimes we’ll try a two-prong approach where we do surgery to diagnose and also treat by implanting an IUD at the same time,” said Wu.

To give the hormonal medication a chance, Chan recommends four to six months of hormonal suppression because it takes time for the body to regulate.

Of course, it’s important to know your fertility goals before starting hormonal therapy.

Chan added, “If a person has specific fertility goals, hormonal management may not be the first line for her. This may prevent her from getting pregnant.”

If the next step is surgery, Chan recommends seeing a specialist — someone who is trained in GYN minimally invasive surgery.

While endometriosis may make it more difficult to conceive, it is still possible to get pregnant, whether that’s spontaneously or through IVF. About one in three women have issues getting pregnant with endometriosis, but the other two out of three have no trouble.

“Patients think that if they have endometriosis they’ll automatically have a problem getting pregnant, and that’s not always true,” said Wu. “Many times in a C-section, we see that a patient has endometriosis and that the patient didn’t know they had it. That’s the spectrum of the disease. When patients are diagnosed with endometriosis, we tell them not to panic.”

The first step is to have conversations with your doctor and diagnose the issue. Afterwards, it’s about finding the right treatment option for you, whether that’s medication or minimally invasive surgery. These can not only help to alleviate the debilitating symptoms of endometriosis, but can help with fertility issues that may stem from the disease.

Irwin’s message to women living with endometriosis is, “Let this be your validation that your pain is real and you deserve help.”