What Is Endometriosis?

A gynecologist explains the origins, symptoms and treatment options for this painful disorder affecting millions of women. 

Endometriosis affects about 10% of women. It happens when tissue similar to the uterine lining grows outside the uterus. Endometriosis causes pelvic pain and can lead to infertility, explains Anna Reinert, MD, a gynecologist with Keck Medicine of USC specializing in endometriosis treatment. 

What causes endometriosis, and who is at risk? 

The exact cause of endometriosis remains unclear, but researchers have identified several potential mechanisms, including backward menstrual flow through the fallopian tubes and endometrial cells spreading through the bloodstream.  

Is endometriosis genetic? 

There’s a strong genetic link to endometriosis. “If a woman has a mother or sister who has endometriosis, that raises her chance of having endometriosis to 50%,” Dr. Reinert notes. 

What are risk factors of endometriosis? 

Changes in estrogen sensitivity are likely part of why endometriosis occurs. Estrogen also affects bone growth and height, and “we see an increased incidence of endometriosis in taller, slimmer women,” Dr. Reinert explains. When one of these patients presents with intense menstrual pain, this may lead doctors to evaluate the patient for endometriosis.  

How do you know if you have endometriosis? 

Common symptoms of endometriosis include severe menstrual cramps, pelvic pain outside of periods, pain during sex or bowel movements and infertility. “If you’re having pain that’s so bad you’re missing school or work, that’s very suggestive of endometriosis,” Dr. Reinert says. She notes that the severity of symptoms doesn’t always indicate the extent of the disease. Some patients may have mild endometriosis but significant pain, and vice versa. 

Can endometriosis cause cancer? 

Endometriosis has links to ovarian cancer risk, particularly with endometrioma cysts. This is why surgery might be recommended for suspected cysts and why monitoring endometriosis is important even in mild cases. 

Does endometriosis cause weight gain? 

While endometriosis doesn’t directly cause weight gain, patients may experience bloating and reduced physical activity due to pain, which can indirectly affect weight. 

Is endometriosis an autoimmune condition? 

While endometriosis involves inflammation, it’s not considered an autoimmune disease. 

How is endometriosis diagnosed? 

Diagnosing endometriosis remains challenging, with an average seven-year delay between first symptoms and diagnosis. “There continues to be a lot of gaslighting of women about pain,” Dr. Reinert observes. “Many are told, ‘Oh, it’s just a bad period. This is normal.’” This dismissive attitude often leaves women struggling to have their symptoms taken seriously, she adds. 

However, doctors are increasingly considering symptom-based diagnosis. Early diagnosis of endometriosis is crucial, as delayed treatment can lead to the development of chronic pain syndrome. 

How is endometriosis treated? 

Treatment for endometriosis typically begins with hormonal therapies like birth control pills, patches or IUDs to manage symptoms. Over-the-counter pain relievers, lifestyle changes, exercise and stress-reduction techniques can provide additional relief. 

For severe cases, surgery may remove endometrial growths. “Much of the surgery I do focuses on preserving fertility,” Dr. Reinert says. Recovery takes 2-6 weeks, and while endometriosis can recur in 20% of patients at two years and in 50% of patients at five years, most patients experience significant pain relief. 

Can you get pregnant if you have endometriosis? 

Endometriosis affects more than 50% of women with infertility, yet many still successfully conceive. The disease impacts fertility through inflammation that can harm sperm, eggs and embryos, and through fallopian tube scarring, Dr. Reinert points out. 

After endometriosis surgery, there’s about a 30% chance of pregnancy within a year, she adds. Surgery can also improve IVF success rates. 

Living with endometriosis 

Endometriosis doesn’t go away on its own and has no cure, but proper treatment helps many women control symptoms and maintain quality of life. If you’re experiencing severe menstrual pain or other concerning symptoms, speak with your health care provider. Remember, your pain is real and deserves effective treatment.

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