If you think you know about endometriosis, think again.
Experts estimate that the disease affects more than 6.5 million American women. And yet, it has become one of the most commonly overlooked diagnoses: even among gynecologists, endometriosis is still not fully understood or recognized.
Although the condition is notorious for causing pain and severe periods, there are lesser-known symptoms that can also indicate endometriosis, including major clinical red flags that are underrecognized due to stigma.
Therefore, it takes an average of 10 years to accurately diagnose endometriosis, as 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 times”
“We need to look beyond the headlines about bad periods that people like to attribute to endometriosis,” Talebian said.
Take for example “endo belly”: a severe and often painful form of abdominal swelling and distention so severe that a person can appear several months pregnant by the end of the day.
In addition to the distinct bulge, this symptom is often accompanied by abdominal tightness, sharp or dull pain, constipation, diarrhea, excessive gas, nausea, and pelvic or lower back pressure.
This arises 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).
“It’s a sign that the immune system is overworked,” Talebian explained.
The swelling can flare up cyclically – most often in the weeks or days before your period – or persist chronically throughout the month.
Chronic fatigue is another fairly common symptom of endometriosis.
Up to 75% of people with endometriosis suffer from persistent and significant exhaustion which has serious consequences on their daily life.
This is a real physiological symptom – not laziness or lack of sleep. It is 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 feeling of tranquility or heaviness.
The body’s pain and nervous system become overloaded, with constant pelvic pain keeping the nervous system trapped in a fight-or-flight stress response, altering cortisol rhythms and depleting physical and emotional reserves.
As a result, sleep disruptions often occur – including nighttime pain, frequent urination and fragmented sleep – preventing the body from fully recharging.
Possible symptoms that also perpetuate this chronic fatigue are iron deficiency anemia due to heavy menstrual bleeding – which leads to severe weakness and brain fog – and the mental and emotional upheaval associated with managing a chronic, often misunderstood illness – which further amplifies physical exhaustion.
“To be very clear, when a provider dismisses your symptoms as ‘stress’ or ‘just bad periods,’ they are ignoring the biological data your body is sending,” Talebian said.
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 people with endometriosis experience dyspareunia, a deep, aching or sharp pain in the lower pelvis during deep vaginal penetration. Dyschezia, dysuria – frequently misdiagnosed as IBS or a urinary tract infection, respectively – and dyspareunia are classic symptoms of deeply infiltrative 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 have conditioned women to believe that debilitating pain is normal,” Talebian said.
For women who have encountered dismissive medical professionals, she recommends approaching their next appointment with a plan of action.
- Find the right expertise: Not all doctors are trained to connect the dots of complex endometriosis. If you’re not heard, you may need to reach out to a reproductive endocrinologist or endometriosis specialist, making your quality of life the primary medical outcome.
- Lead with your data: Track your pain, cycle and digestion to demonstrate a trend. When you can show a provider that your symptoms are cyclical, they will have the evidence they need to investigate further.
“If a provider considers your pain ‘normal,’ let that be your cue to find a new member for your care team,” Talebian said.
“You deserve a clinician who looks at the data, validates your experience, and uses the tools we have to help you thrive.”
Gn Health
