For the estimated 11% of women who have endometriosis, getting answers about their frustrating, often debilitating symptoms can be a long and arduous process. 

“Many women suffer with symptoms for years, and see an average of three to four doctors, before getting a definitive diagnosis,” said Benjamin Zaghi, MD, an OB-GYN with expertise in endometriosis at Cedars-Sinai. 

Unfortunately, when women finally discover endometriosis is the source of their pain or infertility, misinformation about the condition is as insidious as the disease itself.

Endometriosis happens when tissue similar to the uterine lining (the endometrium) grows outside of the uterus. The wayward tissue responds to monthly hormone changes just like normal endometrial tissue does, thickening over time to prepare the body for implantation. 

“Unlike the uterine lining, which drains through the vagina during menstruation, blood from displaced tissue has nowhere to go,” said Zaghi. “Instead, blood and tissue build up on organs and tissues, leading to inflammation, scarring, chronic pain and sometimes infertility.” 

Endometriosis symptoms can be vague, and they differ from woman to woman, which is why getting an accurate diagnosis can be a challenge.

Read: Unearthing Inequalities in Minimally Invasive OB-GYN Surgery

Fact: Not everyone with endometriosis experiences pain during menstruation—and the level of pain does not reflect the severity of disease. “Some women with very small growths experience tremendous pain while others with extensive disease feel little to no discomfort,” Zaghi said. “Silent endometriosis,” which causes no obvious symptoms, is actually a leading cause of unexplained infertility.

Fact: It’s true that 30% to 40% of women with endometriosis struggle to conceive, but up to 80% eventually become pregnant, either naturally or with reproductive assistance. 

“Many women conceive after they have surgery to remove endometrial lesions,” said Zaghi. “And pregnancy itself often provides symptom relief for many women.” However, endometriosis does increase the risk of complications during pregnancy, including miscarriage, preterm birth and cesarean delivery.

Fact: Anyone with female reproductive organs can develop endometriosis at any age—even during adolescence and after menopause.

“Many women with endometriosis first experienced symptoms during adolescence. Unfortunately, their pain was dismissed as normal period cramps, often by female family members who had similar symptoms or by providers who did not recognize the early signs of endometriosis,” said Kacey Hamilton, MD, a minimally invasive gynecologic surgeon at Cedars-Sinai.

After menopause, endometriosis may continue to cause symptoms and lesions can remain active despite very low hormone levels.

Fact: Endometriosis most commonly affects the pelvic organs, including the ovaries, fallopian tubes, uterus and bladder. “But the tissue can implant virtually anywhere in the body, including the lungs and brain,” said Zaghi. Depending on where the displaced tissue sits, symptoms range from digestive problems and pain during sex to difficulty breathing or even seizures during menstruation.

Fact: Removing the uterus, along with any visible signs of disease, may relieve some symptoms, but it won’t cure the disease. “If your ovaries are still producing hormones, new growths can develop in other places of the body,” Hamilton said. 

In fact, there are three surgical options for endometriosis, all with varying degrees of efficacy: 

• Excision of endometriosis: Removing visible endometriosis lesions may improve pain, enhance fertility and provide a definitive diagnosis of the condition.  
• Hysterectomy with bilateral salpingectomy: In addition to excising endometriosis tissue, this procedure also involves removing the uterus and fallopian tubes. 
• Hysterectomy and bilateral salpingo-oophorectomy: The most invasive of the three surgical options, this procedure removes endometriosis lesions, the uterus, the fallopian tubes and both ovaries.

“In general, the more structures and tissues that are taken out, the greater the pain reduction and the lower the chance of endometriosis recurrence,” Hamilton said. “About one-third of women who undergo excision of endometriosis will require surgical repair due to recurrence within five years compared to only 10% of those who receive a total hysterectomy (but retain their ovaries) and only 1% of those who undergo total hysterectomy with bilateral salpingo-oophorectomy.”

Fact: While it’s true that there’s no cure for endometriosis, a variety of treatments can help manage symptoms and slow disease progression, including: 

• Hormone therapies: Since endometrial growths respond to hormones, manipulating hormone levels is often the first-line treatment. Whether you choose oral contraception, vaginal rings, intrauterine devices or nasal sprays, modifying the monthly egg-releasing cycle, or halting it altogether, can help relieve endometriosis symptoms. 
• Surgery: A skilled surgeon may be able to remove endometrial implants to reduce pain and improve fertility, but these surgeries should always be performed by a specialist who is trained in minimally invasive gynecologic surgery, or MIGS. These specialists undergo two years of additional training in a MIGS fellowship after completing an OB-GYN residency program. “Unfortunately, even a highly qualified surgeon can’t undo years of contracting and tightening pelvic floor muscles,” Hamilton said. “That’s why a multimodal treatment approach is so important.” 
• Pelvic floor therapy: Chronic pelvic pain can cause involuntary tightening of the pelvic floor muscles, leading to pain during urination, bowel movements or sex. Learning how to relax and release pelvic floor muscles may help reduce pain. 
• Medical management of pain: Doctors may prescribe over-the-counter or prescription medications to tamp down the inflammatory response and alleviate pain. 
• Acupuncture: A complementary treatment that involves inserting small needles into specific points of the body, acupuncture can help regulate hormone levels, reduce inflammation and ease pelvic pain. 
• Trigger-point injections: Chronic pain may accompany endometriosis. When it does, it can rewire the nervous system, causing widespread pain signals. “Even a small lesion can trigger vaginal, bowel or back pain,” Hamilton said. Trigger point injections in the affected areas, which contain lidocaine or sometimes just saline, help calm those faulty signals.

Read: Should I Get a Second Opinion for Endometriosis

Endometriosis can impact every aspect of a woman’s life. It’s also associated with serious health risks including pregnancy complications and even ovarian cancer. By working with a multidisciplinary team, you can improve your quality of life and maybe even extend your life. 

“It’s not normal to suffer from debilitating pain during your period,” Hamilton said. “If you’re experiencing severe period pain or cyclical symptoms that hit each month during menstruation, don’t let anyone dismiss your symptoms.” 

If left untreated, endometriosis can progress and become more difficult to treat. While laparoscopic surgery is the only definitive way to diagnose endometriosis, many MIGS-trained practitioners can often identify lesions with magnetic resonance imaging. In rare cases, your MIGS-trained provider may be able to identify lesions with advanced ultrasound technology.

“Endometriosis is extremely complex, and every patient’s journey is unique,” Hamilton said. “But with timely diagnosis and a multidisciplinary treatment approach, many women can manage their symptoms, protect their fertility and reclaim their lives.”

Read: You’re Not Alone: Coping with Endometriosis