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If you think you know endometriosis, think again.
Experts estimate the disease affects more than 6.5 million US women. And yet it has become one of the most commonly missed diagnoses — even among gynecologists, endometriosis is still not fully understood or recognized.
While the condition is notoriously known for causing pain and severe periods, there are lesser-known symptoms that can also indicate endometriosis, including major clinical red flags that go underreported due to stigma.
Consequently, it takes an average of 10 years to accurately diagnose endometriosis because its symptoms often overlap with other conditions.
“Endometriosis is a progressive, inflammatory disease, and leaving it unchecked is a gamble with your future health,” Dr. Sheeva Talebian, a reproductive endocrinologist at CCRM New York, told The Post.
Here’s everything you need to know about these lesser-known symptoms.
Beyond ‘bad periods’
“We have to look beyond the bad period headlines that people like to attribute to endometriosis,” said Talebian.
Take “endo belly,” for example: a severe, often painful form of abdominal swelling and distension so significant that a person can look several months pregnant by the end of the day.
In addition to the distinct bulge, this symptom often comes with abdominal tightness, sharp or dull pain, constipation, diarrhea, excessive gas, nausea and pelvic or lower back pressure.
This stems from systemic and local inflammation, endometrial-like tissue growing outside the uterus, gut microbial imbalances, visceral hypersensitivity and high comorbidity with irritable bowel syndrome (IBS).
“This is a sign of the immune system being in overdrive,” explained Talebian.
The swelling can flare up cyclically — most commonly in the weeks or days leading up to menstruation — or persist chronically throughout the entire month.
Chronic fatigue is another fairly common symptom of endometriosis.
Up to 75% of people with endometriosis reportedly experience persistent, heavy exhaustion that severely impacts daily life.
This is a real, physiological symptom — not laziness or a lack of sleep. It’s caused by the body’s constant effort to manage chronic inflammation: ectopic, endometrial-like tissue triggers the immune system to release inflammatory chemicals that drain cellular energy and cause a tranquilized or heavy-eyed feeling.
The body’s pain and nervous systems become overloaded, with constant pelvic pain keeping the nervous system trapped in a fight-or-flight stress response, altering cortisol rhythms and exhausting physical and emotional reserves.
As a result, sleep disruptions often occur — including nighttime pain, frequent urination and fragmented sleep — preventing the body from ever fully recharging.
Possible symptoms also perpetuating this chronic fatigue are iron deficiency anemia from heavy menstrual bleeding — which leads to severe weakness and brain fog — and mental and emotional overwhelm that comes with managing a chronic, often misunderstood condition — which further amplifies physical exhaustion.
“To be very clear, when a provider dismisses your symptoms as ‘stress’ or ‘just a bad period,’ they are ignoring the biological data your body is sending,” said Talebian.
Two taboo red flags
According to Talebian, painful intercourse (dyspareunia) and pain with bowel movements or urination (dyschezia and dysuria) are major clinical red flags that a person might have endometriosis.
More than half of individuals with endometriosis are affected by dyspareunia, a deep, aching or sharp pain in the lower pelvis during deep vaginal penetration. Dyschezia, dysuria — frequently misdiagnosed as IBS or UTIs, respectively — and dyspareunia are classic symptoms of deeply infiltrating endometriosis (DIE), where endometrial-like tissue grows on or near the bowel, bladder or ureters.
The displaced tissue responds to hormonal changes during menstrual cycles, bleeding and causing intense inflammation, swelling and scarring.
“For too long, we’ve conditioned women to believe that debilitating pain is normal,” said Talebian.
For women who have encountered dismissive health professionals, she recommends going into their next appointment with a game plan.
- Find the right expertise: Not every doctor is trained to connect the dots of complex endometriosis. If you aren’t being heard, you may need to pivot to a reproductive endocrinologist or an endometriosis specialist, centering your quality of life as the primary medical outcome.
- Lead with your data: Track your pain, your cycle and your digestion to demonstrate a pattern. When you can show a provider that your symptoms are cyclical, they will have the evidence they need to look deeper.
“If a provider dismisses your pain as ‘normal,’ let that be your signal to find a new member for your care team,” said Talebian.
“You deserve a clinician who looks at the data, validates your experience and uses the tools we have to help you thrive.”