The endometriosis symptoms you need to know

Painful periods have been so normalized that many women don’t realize something could actually be wrong. That’s one reason conditions like endometriosis often go undiagnosed for years, says Rebecca Falik, M.D., an OB/Gyn with Sutter Health. Painful periods are one of the most common symptoms of endometriosis, but they can also signal other health conditions.

“Mild period discomfort often improves with over-the-counter pain relievers such as ibuprofen. Very significant pain with your periods, on the other hand, is not normal. Taking days off from work or school because of a period is not normal,” she says. Women and their healthcare providers need to take these symptoms seriously.  

Understanding what endometriosis is, its symptoms and treatment options can help you have a conversation with your healthcare provider.

What is endometriosis?

Endometriosis is when tissue similar to the lining of the uterus grows outside the uterus. It most often shows up on the ovaries, fallopian tubes or other areas in the pelvis.

Like the tissue that lines the uterus, endometriosis tissue responds to hormonal changes during the menstrual cycle. Because it grows outside the uterus, it can lead to inflammation, scarring and pain. 

Endometriosis symptoms

The main endometriosis symptom is pelvic pain, especially before and during your menstrual periods. Women may also have pain during or after sex, with bowel movements or when they pee. Heavy periods or bleeding between periods are also common.  

It’s important to know that the severity of the pain doesn’t relate directly to the extent of endometriosis tissue in your body.  

“A lot of women will have many years of painful periods that may go unrecognized and untreated,” Falik says. “It takes an average of seven years for a woman to get a diagnosis. By that point, the disease may have progressed into a complex chronic pelvic pain condition.”

Endometriosis can also affect a woman’s ability to have a baby.  

“Sometimes endometriosis doesn't cause pain and can cause silent infertility,” Falik says. “Occasionally, a woman may have an unexplained cause of infertility, and she might have endometriosis that wasn't causing pain but could be causing infertility.”

What causes endometriosis?

Researchers are still studying what causes endometriosis. A few possible causes include:

• Retrograde menstruation. During a period, some blood may flow back into the pelvic area instead of leaving the body.
• Certain immune system conditions. The immune system may not recognize or clear away endometriosis tissue the way it should.
• Embryonic cell changes. Cells that have been in the body since early development may change during puberty and grow into endometriosis-like tissue.
• Endometrial cell transport. Cells similar to those in the uterus may move through the blood or lymphatic system to other areas.
• Surgical scar complication. Endometrial cells may attach to scar tissue that forms after a surgery.
• Transformed peritoneal cells. Cells that line the inside of the abdomen may begin acting like the cells that normally line the uterus.

When to talk to a provider

If you are experiencing pelvic pain, whether during your period or between your periods, talk to your doctor. Endometriosis can be treated with hormonal therapies or a surgical procedure.  

“It’s important for women to know how common this condition is,” Falik says. “It affects one in 10 women. It really is so challenging if a woman hasn’t been listened to, but women should understand that painful periods that can’t be managed by a low dose of ibuprofen are not normal. They deserve to see their doctor and advocate for themselves to receive the care that they need.”