Everything You Need to Know About Endometriosis
July 1, 2025
According to the World Health Organization, 10% of women worldwide, or 190 million women, are diagnosed with endometriosis. But the actual number of women who have endometriosis is likely much higher as so many cases go undiagnosed.
Endometriosis is a disease in which the tissue similar to that which lines the uterus begins to grow outside of the uterus, potentially causing pain and other complications. The main symptom of endometriosis is a painful menstrual cycle, but the pelvic and abdominal pain associated with endometriosis may eventually become chronic.
Endometriosis can begin with the first menstrual cycle and last through menopause. Because so many women are dismissed as simply having painful cycles, it’s essential to raise awareness about this condition.
If you think you or someone you know may be suffering through symptoms without a diagnosis, here’s everything you need to know about endometriosis.
What Makes Diagnosis Difficult
Women see seven physicians on average before getting diagnosed, and the average delay for diagnosis is 8.5 years. Because the symptoms of endometriosis can mimic other conditions, such as irritable bowel syndrome, diagnosis is often prolonged, if even diagnosed at all. “Endometriosis is a fascinating, but troubling disease,” says Dr. Hugh Taylor, chief of obstetrics and gynecology at Yale New Haven Hospital. “It’s something that is often missed,” he says.
Another factor that makes diagnosis difficult is that the only way to diagnose someone with endometriosis definitively is through a laparoscopic procedure. Once endometrial lesions are deep enough, some may appear on an ultrasound, CT, or MRI scan. But by then, the stage of endometriosis may be somewhat advanced. Doctors may suspect the disease and clinically diagnose and treat patients for the time being. If endometriosis is suspected, the only way to a definitive diagnosis is through a laparoscopy.
What to Know About Symptoms
Besides having difficult periods each month, other symptoms include pain that becomes chronic throughout the body, digestive irregularities, bladder issues, fatigue, infertility, and mental health struggles. “We’re not talking a little bit of pain here,” says Philippa Saunders, a reproductive biologist at the University of Edinburgh. “People can’t function.”
When it comes to endometriosis, it’s important to understand that the disease is a whole-body issue. “In the past three to five years, there’s been a complete reframing of this disorder as a neuroinflammatory whole-body condition,” says Saunders. “It isn’t just about a little bit of tissue stuck in the wrong place. Your whole body has reacted.”
Because the tissue can grow anywhere outside of the uterus, endometriosis has the potential to spread throughout the body, affecting every major organ system. Many symptoms are caused by the inflammation that occurs because of the disease. This is why a patient may experience bowel issues, even when lesions are absent in the bowels.
Why You Need a Specialist
Even though endometriosis is a gynecological condition, not every gynecologist is extensively trained in diagnosing and treating endometriosis. Because the condition is so complex and largely misunderstood, even the best doctors are not equipped to treat the disorder if they don’t specialize in it.
The Endometriosis Foundation of America recommends finding a specialist that has exceptional surgical skills, access to modern techniques and equipment, a current understanding of various treatments, and an openness to complementary approaches. Since there is no known cause or cure for endometriosis yet, the best way to manage the condition is through ongoing treatment with a trusted doctor.
“For women, it can be validating to learn that all of their symptoms have an explanation and that we have effective treatments,” says Taylor. If you suspect endometriosis, you should ask your healthcare team, including your general doctor, OB-GYN, and pelvic floor therapist, if they have any recommendations for specialists in your area.
Listen to your body and remain committed to finding a doctor who will listen to you, too. Trust your intuition and ask yourself if a doctor is listening to you, acknowledging your symptoms, and addressing your concerns.
Treatment Options
If endometriosis has been confirmed through another laparoscopic procedure or it is suspected, an excision surgery becomes an option in reducing pain and preventing further complications. Excision surgery at the root of a lesion, rather than ablation, is the best way to prevent the lesions from returning.
However, the removal of lesions is not a cure. A study in the International Journal of Obstetrics and Gynaecology found that 62% of women with endometriosis had a second surgery within two years, while half had a repeat surgery within 5.5 years.
The recurrence rate is why maintaining the condition is the main component of ongoing treatment. Make sure you have a doctor who is knowledgeable in hormone therapy, is monitoring your symptoms closely, and making lifestyle recommendations. For instance, plenty of movement and exercise, particularly pelvic floor therapy and Pilates, reduce recurrence and symptoms, while a plant-based anti-inflammatory diet does the same.
If you are diagnosed with endometriosis, then prioritizing your overall health will be the best thing you can do to manage the condition. Do everything possible to reduce your symptoms, including working with your doctors. With Insureyouknow.org, you may keep all of your research, medical records, and financial documents in one place, making the management of your endometriosis less overwhelming.