In many ways, endometriosis is one of the most mysterious conditions in the world of women’s health. Between its notorious underdiagnosis (not-so-fun fact: Endometriosis is referred to as “the missed disease” due to the challenges of diagnosing the condition) and our lack of societal conversation around endometriosis, there’s not enough understanding of the condition. Few people realize what endometriosis is, the warning signs of the condition, and how exactly endometriosis affects the approximately 1 in 10 women who suffer from it.

For example, while people generally have some awareness of the fact that endometriosis can complicate family-building, many people face the diagnosis with a lot of uncertainties. They wonder if an endometriosis diagnosis means they won’t be able to get pregnant without medical intervention or carry a baby to term, for example.

But here’s what we do know: There’s a range of severity when it comes to endometriosis, and no two cases look exactly the same. So while some people affected by endometriosis will have complication-free conceptions and pregnancies, there is a link between endometriosis and infertility. But of course, the uncertainties about how endometriosis can affect family-building plans don’t just disappear after conception — many people wonder if the condition can lead to pregnancy complications or even miscarriage. We’ve tapped an expert to help break down some information. But spoiler alert: The uncertainties around endometriosis abound, and even experts still have a lot to learn about the condition.

What is endometriosis?

According to the Mayo Clinic, endometriosis is a disorder that causes tissue similar to what typically grows within the uterus to grow outside the uterus. This tissue thickens, breaks down, and bleeds with each menstrual cycle, but becomes trapped within the body since it has no way of exiting. Symptoms include pelvic pain, extreme menstrual pain, and excessive bleeding. Infertility is another common symptom, and the condition is sometimes diagnosed during fertility testing. 

Can endometriosis cause a miscarriage?

We know endometriosis can be linked to infertility. Can it increase someone’s risk of having a miscarriage?

Unfortunately, the answer appears to be yes: Endometriosis can increase a person’s risk of having a miscarriage.

“People with endometriosis are likely to be at more risk of experiencing miscarriage,” confirms Monte Swarup, MD, a board-certified OB/GYN in Chandler, AZ, and founder of HPV HUB.

A 2016 study suggests a relationship as well. 

But why does this relationship exist? 

The answer is, like so many things associated with endometriosis, unclear. 

“This is formally unknown,” says Dr. Swarup of why someone with endometriosis may be more likely to have a miscarriage. “[But] in theory, some of the chemicals made in association with endometriosis increase the risk.” Other experts suggest that inflammation, uterine shape, and scar tissue may be factors as well.  

According to Dr. Swarup, more research is needed in order to fully understand why people with endometriosis may be at greater risk for miscarriage, as well as how significant this link truly is. 

There’s also no evidence-backed way to reduce miscarriage risk for people with endometriosis — again, because the exact cause of this link is unknown, according to Dr. Swarup. With that being said, some endometriosis patients may be encouraged to have surgery to remove endometriosis, and according to Dr. Swarup, that could potentially help reduce miscarriage risk.

“If endometriosis [is] chemical related, any treatment, including surgery, could possibly help but this needs further research,” says Dr. Swarup.

It’s easier said than done, but don’t panic.

This all sounds bleak, and if you’ve been diagnosed with endometriosis, we can understand if you’re terrified upon reading this information. But try to stay positive — and remember, miscarriages are never anyone’s fault. There’s little you can do to reduce your risk, so don’t feel like you need to go to extremes and sacrifice your mental health to improve your odds of carrying to term. 

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“The known difficulty in this population is getting pregnant,” says Dr. Swarup. “Once pregnant, control things one can control and at this point, there is no intervention to decrease the risk.”

If you are experiencing unexplained infertility or have already suffered from one or more miscarriages, the ReceptivaDx test by CiceroDx can help you rule out – or confirm – an endometriosis diagnosis, so that you can receive the proper treatment needed to achieve a healthy pregnancy. 

“It’s important to let patients know that most women with endometriosis have a normal pregnancy,” adds Dr. Swarup. So breathe a sigh of relief.

The bottom line?

Endometriosis remains frustratingly puzzling, but hopefully, research will begin to emerge and allow us to better understand the disease. It isn’t just research that needs to catch up, though: Part of why endometriosis is so poorly understood has to do with how we discuss women’s health culturally. Stigmas around menstrual realities are very much intact. We’ve normalized women’s suffering, which leads to many people viewing extreme pain as just normal aspects of womanhood rather than red flags that may indicate endometriosis. 

It’s key that we talk about these conditions and advocate for ourselves as we wait for more information about this infuriatingly mysterious condition.

Zara Hanawalt is a freelance journalist and mom of twins. She's written for outlets like Parents, Marie Claire, Elle, Cosmopolitan, Motherly, and many others. In her (admittedly limited!) free time, she enjoys cooking, reading, trying new restaurants, and traveling with her family.