Enduring “Endo”

endometriosis pain

Television personality and conservationist Bindi Irwin recently spoke on social media about her struggle with endometriosis.

Irwin, the daughter of the late Steve Irwin, says she's on the mend but spoke of terrible symptoms - fatigue, nausea and pain.

According to the American College of Obstetricians and Gynecologists (ACOG), endometriosis is when the tissue that forms the lining of the uterus (the endometrium) is found outside the uterus, causing bleeding, inflammation, and scarring.

While the most common symptom of endometriosis is pelvic pain, this is also a common side effect women experience during their menstrual cycle. In fact, according to the National Institutes of Health (NIH), more than 80% of women experience pelvic pain during their period. This may make it difficult to differentiate what is causing your pain – especially because the pain caused by endometriosis typically occurs during the same time.

Dr. Vanessa Foster, an OSF HealthCare OB/GYN, recommends talking to your OB/GYN if you experience heightened pain during your menstrual cycle, as your provider can help determine its root cause.

“Sometimes it is difficult to tell, because everybody’s pain threshold and how they tolerate pain is different. But usually, endometriosis pain is associated with your menstrual cycle. Don’t ignore the pain. As women, we get busy in our lives and are taking care of everything else and you may just ignore it and take Tylenol or Ibuprofen – but I would just say don’t ignore it,” says Dr. Foster.

She adds that not all women who experience pelvic pain have endometriosis. Sometimes, only a small amount of endometriosis may cause severe, debilitating pain while in other cases, a higher amount of endometriosis may cause little pain. In fact, many women with endometriosis may have no symptoms at all.

In some cases, endometriosis is not detected until a woman is at a stage in her life when she is trying to start a family.

“Endometriosis effects 5-10% of reproductive age women, and about a third of them will have infertility problems associated with the endometriosis,” Dr. Foster explains.

Because of this, if you have been struggling with infertility, Dr. Foster recommends talking to your health care provider about the possibility of having endometriosis that has gone undiagnosed.

In addition to being a woman of reproductive age, the NIH adds that other risk factors for endometriosis can include having a mother, sister, or daughter with endometriosis; starting your menstrual period at an early age (before age 11), having short monthly cycles (less than 27 days), or having heavy menstrual periods that last more than seven days.

Dr. Foster says that while most OB/GYN providers can typically determine the presence of endometriosis during an examination, further steps need to be taken to know for sure.

“It can only be diagnosed surgically. So you have to look at the endometriosis and take a biopsy of it. A lot of times, we can generally diagnose it based on history and everything falls into the endometriosis category – but to definitively diagnose it, you need to have surgery,” says Dr. Foster.

If you think you might have endometriosis, Dr. Foster recommends making an appointment with your OB/GYN and bringing a journal of some sort with you to your appointment to share with your provider.

“The best thing is to keep a menstrual calendar. We want to know when the pain started, how long the pain lasts, what it is associated with, does it come before the onset of bleeding or does it come after. So the best advice I have is to keep a very detailed menstrual calendar,” Dr. Foster advises.

Most importantly, endometriosis can be treated. If you have endometriosis, your provider can work with you to develop a personalized treatment plan that can range from over-the-counter medications to surgical intervention.