Here’s what we know about endometriosis: It takes women with the condition a long, long time — we’re talking ten-ish years — to secure a diagnosis. The condition is horribly painful, yet our tendency to normalize and dismiss women’s pain leaves its sufferers in a constant state of invalidation. They’re routinely gaslit. And now, we have reason to wonder if people with endometriosis are, quite literally, fearing for their lives.
People are Googling the phrase “is endometriosis deadly?” We don’t have any way of knowing exactly what leads women to that particular question, but we have a theory…a theory that will probably make perfect sense to anyone who lives with endometriosis and knows how debilitating the pain can be. We surmise that people with endometriosis are in such terrible pain, they’re wondering if what they’re experiencing can literally kill them.
So let’s answer their question. Is endometriosis deadly?
The simple answer is “no” — at least not directly, according to Dan Martin, MD, EndoFound Scientific and Medical Director.
Dr. Martin believes people with endometriosis shouldn’t worry about the possibility of dying from the condition — you are, in his words, far more likely to be killed in a car accident.
Death by the physical effects of the disease may technically be possible, but is exceedingly rare, and in all likelihood preventable with proper medical care.
“We’ve seen this in animal research. Animals don’t have access to care, which means they can obstruct bowels, they can lose kidneys. If you take away access to medical care, could someone obstruct both kidneys or obstruct the bowel because nobody took care of them? That’s possible, but I've never heard of that happening,” says Dr. Martin. “Can endometriosis block the bowel? Of course it can. It does that. But if somebody takes care of it, are you going to do well? Probably. But if you ignore it, if you had no access to medical care, could that be deadly? Yes it could. Compared to other things that are more common, the chance of that happening [is] maybe 1 in a million.”
Of course, access to quality medical care is not universal — but this point underscores the importance of seeking out care for any symptoms that feel even remotely dangerous. This is harder to do if your previous concerns have been invalidated, and that’s just one other reason we need more societal space for women to voice their health concerns and for those concerns to be taken seriously.
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Can endometriosis increase your odds of other health complications?
According to Dr. Martin, pregnancy is a far more dangerous medical scenario than living with endometriosis. But yes, endometriosis may increase a person’s chances of suffering pregnancy complications. Minimizing the risks here comes down to proper medical care.
Endometriosis may also be linked to certain types of cancer, but the exact relationship is unknown. “We don’t know if endometriosis and cancer are like brother and sister or like parent and child,” says Dr. Martin. “We don’t know if endometriosis causes that problem or if it is a problem that is associated with it because there’s a common cofactor associated with it. We don’t know if it causes it or if it’s just associated with it.”
These links are worth considering, but according to Dr. Martin, thinking about endometriosis’s indirect dangers is more important.
“The bigger concern is the indirect problems,” he says. “I did find one death in the literature [where] somebody died because they bled out [after becoming anemic] due to endometriosis. But those are all things that are in the 1 in a million level.”
Many indirect dangers of endometriosis come down to our invalidation of women’s pain.
An 18-year-old named Trinity Lillian Graves died by suicide after four years of living in debilitating pain. Graves was diagnosed was endometriosis, and before her suicide, she left these words: ”I please ask you to understand the pain and anguish I live with every day is unbearable. My physical pain is beyond unbearable and I’m tired so so so so tired of living in a body that isn’t my body.”
Graves’s mother, Sarah Austin, shares her late daughter’s devastating story. It’s absolutely gutting to read about how endometriosis destroyed her short life, yet it’s so important that we pay attention to Graves’s story, and similar stories, so we can create a better culture around women’s health issues — a culture that allows girls and women to express their pain, be taken seriously, and be granted access to care.
“One of the things you worry about with any chronic pain condition, and this includes endometriosis and any chronic pain condition, is that they will get depressed and attempt suicide,” says Dr. Martin, who estimates that a third to a half of people with endometriosis contemplate suicide.
“That’s a deadly thing,” says Dr. Martin. “That was one of those things I was always worried about in my practice, that [patients] would get depressed and I wouldn’t recognize it.”
So how do we address this danger?
The first step is to address the normalization of women’s pain. We’ve talked about this a lot at Rescripted, but it truly can’t be stated enough. When women and girls voice their pain, they deserve so much more than to be told that debilitating cramps are a normal part of menstrual cycles, or that what they’re experiencing is all in their heads. If this doesn’t happen, women and girls living with chronic pain conditions like endometriosis will be in real danger.
“Pain needs to be taken care of,” says Dr. Martin. “People need to be recognized as having pain [and] we need to quit normalizing it. This whole thing of normalization of pain and ignoring it, and ignoring depression is dangerous. I’m more worried about depression associated with endometriosis than I am with endometriosis itself.”
Dr. Martin shares the analogy: If a sixty-something man complains of chest pain, we immediately think about cardiac issues — we take this complaint seriously, both as the general public and within the medical community. But when a teenage girl complains of menstrual cramps, we assume that’s just a normal symptom. We don’t encourage these patients to advocate for themselves or seek out medical care.
“If it’s a 16-year-old talking about menstrual cramps, everyone’s going to normalize it. The patient is going to normalize it, her parents are going to normalize it, her doctors are going to normalize it. The whole society is going to normalize it,” says Dr. Martin. “Most men with chest pain don’t have heart attacks and most women with menstrual cramps don’t have endometriosis — but we have to be attuned to [it]. If a woman has enough menstrual pain that she’s telling somebody, that’s not normal.”