Why has this condition that affects 1 in 10 women gone severely under-diagnosed for so long? 

The average time it takes to diagnose endometriosis is 7-9 years globally. That’s 7 to 9 years of dealing with period pain that isn’t relieved by painkillers, irregular or heavy periods, painful sex, having blood in the stool, constant fatigue, and infertility. 

Misconceptions about endometrioisis, gender bias, lack of appropriate diagnostic tools and treatment, and the wide array of symptoms leading to repeated misdiagnoses could contribute to the length of time it takes to achieve a diagnosis. 

Misconceptions of endometriosis 

The lack of research on endometriosis, as well as women’s symptoms being belittled by professionals, has led to multiple misconceptions and gaps in the understanding of the condition. One misconception is that endometriosis is equivalent to a bad period, when it is, in fact, a full-body disease. Endometriosis has been found in every organ in the body, with symptoms manifesting in various areas of the body, including the bladder and diaphragm. 

Another common misconception among healthcare professionals is that a hysterectomy can cure endometriosis. However, endometriosis is a condition where tissue similar to the lining of the uterus grows outside the uterus, affecting other areas of the body.

Jenneh Rishe, a registered nurse and founder of the nonprofit The Endometriosis Coalition, notes that since endometrial-like cells are located outside the uterus, removing the uterus doesn’t address the root of the disease.  No current research shows that hysterectomy effectively treats endometriosis, yet it is a frequently recommended option.

The gender pain gap 

When women seek medical help for chronic pain related to their periods, they’re often told it’s just a “bad period” and something they need to manage on their own.

This reflects a broader issue known as the gender pain gap: the pattern where women report chronic pain more often than men but are less likely to receive appropriate or timely treatment.

As a result, women’s pain is sometimes dismissed as being overly emotional or exaggerated, rather than taken seriously as a true physical condition.

Complicated diagnostic methods and unclear treatments 

Currently, the generally accepted way of diagnosing endometriosis with certainty is through laparoscopic surgery, which allows visualization of the endometriosis lesions. Currently, the only way to 100% diagnose endometriosis is through laparoscopic surgery, which allows visualization of the endometriosis lesions. This method can feel too invasive for many people, preventing them from seeking a diagnosis. 

Treatments to manage endometriosis do exist, although they are far from perfect. Once diagnosed with endometriosis, some women are offered surgery to remove the tissue growing outside the uterus. While this can bring relief, the tissue often returns over time, meaning some people may need to undergo surgery more than once.

In other cases, doctors might suggest managing the condition with medication, depending on how severe the symptoms are. They may start with common pain relievers like ibuprofen, which are typically used for period cramps.

Hormonal treatments are another option. These include birth control pills or devices like IUDs (intrauterine devices), which can help regulate hormones and reduce symptoms.

However, none of these treatments offer a guaranteed fix. Over-the-counter painkillers may not be strong enough for the kind of pain endometriosis causes, and hormone treatments can bring unwanted side effects that affect daily comfort and well-being.

Just like in any medicine, what works for one body might not work for another. Some people with endometriosis may respond well to hormone therapy while it may do more harm than good for others. This highlights the importance of an individualized, carefully tailored approach to care. For endometriosis specifically, a 2018 study published in The Journal of Clinical Endocrinology and Metabolism found that different responses to treatment may be related to the type of endometrial-like tissue growing outside of the uterus and how it responds to progestin therapy. 

Wide-range of symptoms 

Because endometrioisis can affect virtually any organ in the body, its symptoms manifest all over the board. Symptoms of endometriosis like extreme fatigue, pain with bowel movements or urination, and lower back and pelvic pain can be caused by a variety of conditions. 

This makes misdiagnosis common, adding to how long it takes to achieve a true endometriosis diagnosis and begin proper treatment. 

The weight of endometriosis

While endometriosis causes significant physical pain, one of its most powerful impacts is how it limits a woman’s ability to live her life with ease and confidence.

It’s not just about managing intense pain or heavy bleeding, though those symptoms can be deeply disruptive. It’s also the emotional toll of having to constantly plan around flare-ups, cancel activities, or miss work and school.

Perhaps most difficult of all is the feeling of not being believed. Many women with endometriosis are dismissed by providers, employers, teachers, and even loved ones, who reduce the condition to nothing more than “bad period cramps.” This ongoing disbelief adds another layer of frustration and isolation to an already challenging experience.

Further endometriosis resources with easily digestible, reliable information: Center for Endometriosis Care, Endo What?, and The Endometriosis Summit.