Endometriosis:
What You Should Know
-
Endometriosis is a chronic, highly inflammatory, whole-body disease. Current research has shown that one of the conditions for the development of endometriosis lesions is the dysfunction of the immune system
In the simplest terms, endometriosis is tissue similar to the lining of the uterus that is found outside the uterus. This tissue creates lesions that become inflamed, causing pain, endometriomas (cysts), scar tissue formation, infertility, and inflammation to the surrounding tissues which can lead to organ dysfunction and organ damage.
Endometriosis is not only found in the pelvis. It is also often found on places like the bladder, bowels, appendix, diaphragm, and even lungs. To date, it has been found in virtually every organ in the body.
Endometriosis affects an estimated 1 in 10 women and people assigned female at birth worldwide, yet it remains widely misunderstood and underdiagnosed.
-
Each person with endometriosis experiences symptoms differently. Common symptoms may include:
• severe or debilitating menstrual cramps
• chronic pelvic pain
• pain during or after sex
• painful bowel movements or urination
• heavy or irregular periods
• infertility or difficulty getting pregnant
• fatigue, bloating, nausea, or digestive issuesSymptoms often begin during adolescence, but many people are told their pain is “normal,” which can delay diagnosis and treatment.
Some may experience symptoms on a cyclical basis while others may have symptoms every day. This varied symptom profile is one of the factors that makes endometriosis difficult to diagnose.
-
On average, it takes 7–10 years for many patients to receive an accurate diagnosis.
During that time people may see multiple healthcare providers and be misdiagnosed with conditions such as IBS, pelvic floor disorders, or simply painful periods. Cultural stigma around menstruation and limited education about endometriosis among both patients and providers can contribute to this delay.
Earlier recognition of symptoms is a key step toward improving care.
-
Endometriosis can sometimes be suspected based on symptoms, medical history, and imaging tests such as ultrasound or MRI. However, these tools do not always detect the disease.
THis means that a diagnosis of endometriosis cannot be 100% confirmed or negated by CT scans, MRIs, or ultrasounds.
While symptoms can give doctors a suspicion of endometriosis, relying on symptoms alone may lead to misdiagnosis and improper treatment.
Currently, the most definitive way to diagnose endometriosis is through laparoscopic surgery, where a surgeon can directly visualize and remove lesions and confirm endometriosis from pathology.
Because symptoms can vary widely and imaging is not always conclusive, diagnosis often requires providers who are experienced in recognizing the disease.
This may be the most important step - finding a specialist who treats people with endometriosis every day.
-
There is currently no known cure for endometriosis, but there are treatments that can help manage symptoms and improve quality of life.
Treatment approaches may include:
• surgical removal of endometriosis lesions (excision)
• hormonal therapies that suppress estrogen (these only manage symptoms - they do not treat the disease)
• pain management strategies
• pelvic floor physical therapy
• lifestyle and supportive care approachesTreatment plans vary depending on symptoms, goals, and individual health needs.
It’s important to repeat that eventhough hormonal treatments (OCPs, Lupron, Orlissa, Etc.) are highly regarded as an acceptable treatment of the disease itself, in actuality, they only manage the symptoms.
Removing endometriosis lesions by excision surgery with an endometriosis specialist is used for effectively treating endometriosis lesions. Many surgeons perform a less successful surgical technique, ablation, that simply burns away the top of the disease, leaving the root behind. Excision surgery requires a very high level of surgical skill, since endometriosis can be found anywhere in the body. Though endometriosis does not have a cure, many who have undergone expert excision surgery have seen long-term relief in symptoms, decrease in pain, and improved quality of life.
Surgery to remove the disease is only the first step of a multidisciplinary approach to more effectively treating endometriosis.
-
Endometriosis can affect fertility for some individuals, but many people with the condition are still able to become pregnant.
The disease may affect fertility by causing inflammation, scarring, or anatomical changes in the reproductive organs. However, the relationship between endometriosis and fertility is complex, and outcomes vary widely.
For some people, specialized surgical care or fertility treatments can improve the chances of conception.
-
Endometriosis has historically received limited research funding and medical education compared with other conditions of similar prevalence.
For many patients, symptoms such as severe menstrual pain have long been normalized or dismissed. Cultural stigma around menstruation, gaps in medical training, and a lack of public awareness have all contributed to delays in recognition and care.
Increasing education — for patients, healthcare providers, and the public — is one of the most important steps toward improving diagnosis, treatment, and research.

