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‘Silent’ endometriosis isn’t silent: we just aren’t listening
Many patients with “silent,” or asymptomatic, endometriosis shout for decades, but no one listens
The first time some women hear about endometriosis is often when they’ve failed to conceive after one year of trying, or after they’ve lost a pregnancy. It's estimated that between 20 and 25% of women of reproductive age with endometriosis have silent, or asymptomatic, endometriosis.
However, its very name belies any statistics. The “silent” part of the diagnosis refers to the fact that it can take years – sometimes decades – to find out that lesions that mimic the tissue of the endometrial lining of the uterus are growing outside of the uterus, sometimes on other organs.
The lesions don’t just develop on top of the organs, but like icebergs, they can grow inward, penetrating and damaging tissue. Currently, the only way to diagnose endometriosis is to undergo surgery to remove the lesions.
But the truth is that not all of these cases are truly “silent” endometriosis. In many instances it may be more likely that we are silencing it. Many endometriosis patients shout for decades, but no one listens.
That’s because teens and women with endometriosis experience “severe, life-impacting pain.” That pain is chronic. They feel pain during periods, sex, bowel movements and urination. They can feel abdominal bloating, nausea, constipation, and fatigue regularly.
They also feel pain in the unsurprising emotional symptoms that accompany endometriosis: depression and anxiety. It’s ingrained to accept that monthly suffering is part of our experience as women. There remains so much discomfort about women’s bodies and menstruation that period pain – even the kind that keeps us in bed once a month – is seen as normal. But pain that severe is not normal.
Infertility is usually last on the list of these difficult symptoms. It’s the information that finally points to “silent” endometriosis because it usually isn’t revealed until later, during one of the most emotionally fragile times of their lives. Health professionals could better hear “silent” endometriosis if we listened more closely to the menstrual pain and endometriosis-related symptoms teens and younger adults have been describing.
Hearing the voice of endometriosis isn’t just about physical symptoms — it’s about the stories people tell about their families and their pain. Throughout their lives, a family member might’ve said, “Our family is just cursed with terrible period pain.” Maybe sisters and aunts frequently miss family gatherings, or regularly remain in bed for a day or two every month when they have their periods.
For doctors, these aren’t just stories; they are key parts of a thorough, meaningful medical history — the medical truth behind a family supposedly cursed with menstrual pain. After all, endometriosis is genetic.
A female whose mother or sister has endometriosis has a six-fold increased chance of also having it.
For those with supposedly silent endometriosis, there’s often a gaping disconnect between their suffering and what they’re told, or, in some cases, what they haven’t been told. Their diagnosis may be both evidence of a condition and proof that it has been dismissed.
Calling endometriosis “silent” may be inaccurate and unhelpful to many. It stigmatizes those who might have the condition because they are experiencing pain; their symptoms are not quiet.
When we normalize women and teens being sidelined every month with intense pain, when we treat menstrual pain as a family secret, or as information too embarrassing to share with doctors, we are perpetuating how we evade the whole truth of this so-called “silent” condition.
Endometriosis cries out for understanding, acceptance and research so we can develop non-surgical tests and treatments for it. But we can only do that if we’re open to listening, and not silencing, all patients and all their symptoms, whether severe or vague.
Christine Metz, PhD, is a professor in the Institute of Molecular Medicine at the Feinstein Institutes for Medical Research. She co-leads the Research OutSmarts Endometriosis (ROSE) clinical study.
This op-ed originally appeared in US News & World Report.
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