If you have endometriosis elsewhere in your body and think the disease has traveled to your fallopian tubes, or if you’re having difficulty becoming pregnant, you have options.

Endometriosis of the fallopian tube(s) is, simply, endometriosis.

Endometriosis is an idiopathic disease where cells similar to the ones all along the lining of the uterus (known as the endometrium) grow anywhere outside the uterus.

While these cells can plant anywhere in the body, they’re most commonly found in and around the pelvic organs. One of the pelvic organs these cells may infiltrate is the fallopian tube.

Roughly 10% of reproductive-age females — approximately 190 million people worldwide — have endometriosis.

“But it’s difficult to determine how many of these people have endometriosis of the fallopian tubes,” says Suzy Lipinski, MD, OB-GYN at Obstetrix of Colorado, part of Pediatrix Medical Group.

Endometriosis of the fallopian tubes can only be diagnosed if the fallopian tubes are removed and then examined under a microscope, she says.

However, some researchers hypothesize that many cases of endometriosis actually start in the fallopian tubes, explains Lipinski. “So it is likely a large percentage of people with endometriosis have affected fallopian tubes.”

One 2018 study found that up to 60% of people with moderate-to-severe endometriosis have fallopian tube involvement, while one 2011 study suggests just 30% will have the condition impact their fallopian tubes.

Endometriosis of the fallopian tubes can lead to damaged or blocked tubes, explains Elise Dallas, clinical lead for the women’s health team at Babylon Health.

“The fallopian tube is the location where sperm meets the egg,” she says. If there are blockages in both fallopian tubes, the sperm can never meet and fertilize the egg, which means no pregnancy.

“Blocked fallopian tubes do not usually result in symptoms beyond infertility or fertility struggles,” adds Dallas. “People with endometriosis of the fallopian tubes likely will not have specific symptoms that indicate that their fallopian tubes are affected.”

You may experience general symptoms of endometriosis, including:

“There are also people with endometriosis and endometriosis of the fallopian tubes that do not experience any symptoms at all,” notes Lipinski.

Endometriosis has no known cause, regardless of its location in the body.

That said, some data suggests that you may be more likely to develop endometriosis if you:

According to Dallas, “endometriosis of the fallopian tubes is often discovered when someone is having a hard time getting pregnant.”

The main diagnostic tool is something called a laparoscopy biopsy.

“During a laparoscopy, a surgeon passes a thin tube with a light and camera through a small cut in the lower abdomen,” explains Dallas. “The doctor can then use the light and camera to see any patches of endometriosis tissue.”

If your doctor finds growths that they think are — or could be — related to endometriosis, they may scrape a few cells from the tissues in question. They’ll send the sample to a laboratory for testing to confirm the diagnosis.

Although this is considered the gold standard for endometriosis diagnosis, the procedure is quite invasive.

As a result, imaging tests like an ultrasound or MRI are sometimes used. But false negatives are very common with both of these options.

A hysterosalpingogram (HSG) test is sometimes used, but as with laparoscopy, it’s invasive, notes Dallas.

“The doctor fills the uterus with a solution containing dye to provide visual contrast and then uses an X-ray to look at the uterus and fallopian tubes,” she explains.

If the dye is flowing as expected throughout your fallopian tubes, she says it’s unlikely that you have endometriosis of the fallopian tubes.

If it isn’t, it could be because endometriosis caused abnormal growths and tissues in the fallopian tubes. However, endometriosis of the fallopian tubes isn’t the only cause of tube blockages, so it’s still not a sure bet.

There isn’t a cure for endometriosis or endometriosis of the fallopian tubes, but the condition can be managed.

According to Lipinski, your care plan will vary depending on the severity of your symptoms, as well as whether your goal is to relieve pain or support fertility.

“For those who do not desire pregnancy and have mild symptoms, hormonal suppression with oral contraceptives may be used,” she says. “Depo-Provera or a progestin IUD are [also] excellent options regardless of the location of the endometriosis.”

For those with more severe symptoms, a 4- to 6-month course of gonadotropin-releasing hormone (GnRH) agonists could be an option, she says. This medication stops the ovaries from making hormones, which helps alleviate symptoms.

But it can also cause menopause-like side effects, making GnRH agonists a suboptimal option for people who want to become pregnant.

For those with advanced disease who are done with childbearing, a total hysterectomy with removal of fallopian tubes and ovaries may be the best way to treat the disease.

“Endometriosis anywhere in the body does not necessarily cause infertility,” says Dallas. “Even with severe endometriosis, natural conception may still be possible.”

However, it’s unclear how many people who have endometriosis of the fallopian tubes are able to get pregnant without medical intervention.

“Work with an OB-GYN and fertility specialist like a reproductive endocrinologist for further workup and evaluation,” says Lipinski.

Your clinician may recommend an assisted reproductive technology like in-vitro fertilization if you’re hoping to get pregnant ASAP.

If you’re hoping to get pregnant sometime in the future, your clinician may recommend trying to suppress the disease with hormonal birth control until you’re ready to try to conceive.

Endometriosis of the fallopian tubes is nearly impossible to diagnose. But if you’re reading this because you know you have endometriosis elsewhere in your body and think the disease has traveled to your tubes, or because you’re having difficulty becoming pregnant, you do have options.

Treatments are available for any symptoms you’re experiencing as a result of endometriosis, as well as ways to preserve the likelihood of conceiving now or in the future.

Gabrielle Kassel (she/her) is a queer sex educator and wellness journalist who is committed to helping people feel the best they can in their bodies. In addition to Healthline, her work has appeared in publications such as Shape, Cosmopolitan, Well+Good, Health, Self, Women’s Health, Greatist, and more! In her free time, Gabrielle can be found coaching CrossFit, reviewing pleasure products, hiking with her border collie, or recording episodes of the podcast she co-hosts called Bad In Bed. Follow her on Instagram @Gabriellekassel.