Bindi Irwin found relief for this painful condition

Endometriosis is a painful condition that occurs when tissue similar to the tissue that normally lines the inside of a woman’s uterus (the endometrium) grows outside the uterus. In March 2023, conservationist Bindi Irwin, the only daughter of “Crocodile Hunter” Steve Irwin, shared the news that she had suffered from debilitating pain from endometriosis for 10 years before finding relief through surgery.

In her Instagram post about her experience with endometriosis, she wrote that one doctor told her, “It was something you simply deal with as a woman.”

Irwin’s experience is not unusual. The Alliance for Endometriosis, a group of seven women’s health organizations that work together to improve the lives of women with endometriosis, did a survey that included 1,800 women. The survey revealed that even though about 10 percent of women experience endometriosis, 90 percent of them are disbelieved, dismissed or ignored by doctors and family.

“I think there’s a lot of discussion around this right now with women’s health because women don’t always get heard in these situations,” said Tara Chute, MD, vice chief of Obstetrics and Gynecology for Cape Cod Healthcare. “If you are having a provider that is not taking the symptoms to a point of either diagnosis or a treatment plan that’s working for you then I would say seek alternative care because endometriosis is common and there are many treatment options that can be tried.”

What Causes It?

One of the reasons endometriosis is challenging to diagnose is that there are multiple theories about how it is caused, she said. The most common theory is retrograde menstruation, meaning that when you have blood inside your uterus it comes out through the vagina. But sometimes the blood spills outside the fallopian tubes into the abdomen. That blood has no way to exit the body.

When women menstruate, their uterus gets crampy from inflammation caused by hormones. It just makes sense that the same hormones would stimulate any endometrial tissue that is embedded somewhere outside the uterus and cause pain.

Another theory is that it is embryonic, meaning that it was involved in the stem cells when a woman goes through puberty. This theory could explain why some people have endometriosis in locations in the body that can’t be explained, Dr. Chute said. Other theories include that it spreads through the lymphatic system or through the blood stream.

Another part of the problem is that endometriosis can only be definitively diagnosed with surgery. Even though that ultimately is the choice Bindi Irwin made, Dr. Chute doesn’t automatically recommend surgery as a first course of treatment. When she sees a patient that has a suspected endometriosis diagnosis, she takes a complete history of the symptoms.

“The most common symptoms I see in women are painful periods, painful intercourse and sometimes with advanced endometriosis or endometriosis in other locations you can have a lot of intestinal symptoms,” Dr Chute said.

Medical Treatment First

There are two reasons Dr. Chute doesn’t believe in starting treatment with surgery:

• The surgical procedure is usually laparoscopic where you place a camera in the abdomen and simply look around. There is a good chance the endometriosis is in an area that can’t be seen, so even if the patient has it, it can’t be definitively diagnosed.
• If the doctor does the surgery and proves the patient does have endometriosis, it can be in locations that cannot be cut out, such as the ureter or all over the bowel. Unless they do an extensive removal of organs, which Dr. Chute doesn’t recommend, surgery does not take care of the problem.

“At the end of the day we end up coming back to medical management,” she said. “So often with patients I’ll say this generally isn’t a dangerous process so why don’t we try medical management first and, if that fails, then we can talk about surgery. If we undergo surgery with no diagnosis, we go back to medical management, so we might as well start there.”

All treatment options depend on a woman’s health, co-morbidities, lifestyle and age. Endometriosis is stimulated by hormones so it’s ironic that the most common treatment is birth control pills or other similar alternatives like the patch or NuvaRing, all of which contain hormones. The reason this treatment might cause relief from pain has to do with the way estrogen works in the body. It has a U-shaped reversible curve, which means that if you have too little estrogen, a menstrual cycle doesn’t occur and if you have too much estrogen it also shuts off these hormones.

“Another common and successful treatment is Depo-Provera which is a high-dose progesterone injection, which is also known for contraception, but it works really well with endometriosis,” Dr. Chute said.

For cases with more severe pelvic pain and extremely painful intercourse, the injectable medication Lupron can help. The treatment is one injection monthly for three to six months, maximum. That suppresses estrogen levels to an almost menopausal state, which can affect other things like bone health, but even a short duration on the medication can offer months or sometimes even years of relief. A new medication called Orilissa works in a similar fashion but doesn’t drop estrogen levels as low. It can be taken for up to two years.

“That can be very successful for painful periods and painful intercourse,” Dr. Chute said.

Last Option

The last option many doctors recommend is hysterectomy, but Dr. Chute said that term means different things to different people. The technical definition is removal of the uterus, which doesn’t guarantee the pain will stop.

“As long as the ovaries are still present, and especially if you have tissue implants in other places, you’re still stimulating those implants,” she said. “And so, while you can remove some pain unless you do a complete oophorectomy (removal of the ovaries) there is always a chance that you still have pain after a hysterectomy, if you retain your ovaries.”

The decision about whether to have a hysterectomy and oophorectomy is individual and depends on things like age, proximity to menopause and possibility of hormone replacement therapy afterwards if needed.

“I have a less is more approach with my care,” Dr. Chute said. “But, with that said, at the end of the day the goal is to take care of the patient and, number one, not miss something that could affect their health but, number two, improve their quality of life as well.”