What Do I Need to Know About Endometriosis?

Endometriosis infertility

Your uterus produces extra tissue each month to create a cushy home for your potential baby. But if you have endometriosis, your endometrial tissue grows wild, and can end up in places you don’t want it to be—including places where it could cause some infertility issues. In fact, a recent Journal of Assisted Reproduction and Genetics study estimated endometriosis is to blame for between 25% to 50% of all infertility cases.

What is endometriosis?

Endometriosis is when endometrial tissue (or endometrium, what lines your uterine cavity) grows “ectopically,” or outside the uterus. Most often, it shows up in areas throughout the pelvis and near your uterus—your fallopian tubes and ovaries, on the outside of the uterus, in the vagina or cervix. In a few rare cases, it can even end up in other places, like your upper abdominal cavity or bowels.

More than 11% of women between the ages of 15 and 44 have developed endometriosis.

U.S. Department of Health and Human Services

It may feel like you’re the only person in the world dealing with these symptoms, but the truth is, it’s just that people don’t talk about their symptoms. Endometriosis is extremely common. According to the U.S. Department of Health and Human Services, more than 11% of women between the ages of 15 and 44 have developed it. Of those women, 30% to 50% experience some form of endometriosis infertility challenges. This is most common in women who:

  • Are in their 30s and 40s, especially those with family members who have had it
  • Started their period at a younger age
  • Have never had children
  • Have a family history of endometriosis

Signs of endometriosis

The most common red flag that you might have endo is severe cramping and pain, especially during your period. Here are some of the other telltale signs that you’re growing endometrial tissue in odd places:

  • Pelvic pain: Women with endometriosis often develop chronic severe back and pelvic pain. They may also experience severe menstrual cramps, pain when they pee, and even painful sex (which will definitely be a fertility hurdle).
  • Digestive upset: Stomach cramping, diarrhea, constipation and bloating occasionally accompany endometriosis, especially if you have your period.
  • Heavy periods—and spotting in between them: Women with endometriosis may bleed outside their typical menstrual cycle, or develop heavy bleeding when they have their period. Fun times!
  • Infertility: Scarring and excess tissue can literally cause a roadblock that can keep eggs and sperm from meeting, or even prevent a fertilized egg from implanting in the uterus.

How endometriosis relates to infertility

In case its other symptoms didn’t suck enough, endometriosis can also cause infertility, thanks to the scarring and excess tissue buildup. Ironically, all that endometrial tissue that your body is producing for a baby could actually block the pathways to conception.

“Endometriosis is thought to cause infertility because of the scarring and adhesions that result when endometrium grows on pelvic organs,” says Dr. Nataki Douglas, M.D., Ph.D, director of translational research for the Department of Obstetrics, Gynecology and Women’s Health at Rutgers University in New Jersey.

The more extensive the disease and scarring, the greater the negative impact on fertility. “For instance, the adhesions can make it more difficult for an egg to be swept up by a fallopian tube and become fertilized.”

What your doctor might recommend

The good news is, endometriosis can often be treatable. Depending on your situation, treatment might include:

  • Hormone therapy: Often in the form of birth control pills, this prevents additional tissue growth and damage.
  • Pain relievers: Over-the-counter pain relievers can help manage the pain that comes with endometriosis at certain points in your cycle.
  • A diagnostic workup: Talk to a reproductive endocrinologist if you don’t get a positive pregnancy test on your own within 6 months. Dr. Marra Francis, MD, FACOG, an OB/GYN in The Woodlands, TX, notes that a diagnostic workup may include diagnostic procedures for endometriosis and a hysterosalpingogram (HSG), which will show if your tubes are blocked. This may prevent pregnancy or increase the risk of an ectopic pregnancy, so you’ll want to work with your doctor on figuring out the best course of action.
  • Surgery: This is one of the most effective methods for treating endometriosis, according to Dr. Douglas, but is also super invasive. Surgeries can remove adhesions and ovarian cysts, clearing tissue out of the fallopian tubes and making pregnancy a real possibility.

Still, you might need a little boost to make that baby happen. While there are tons of treatments out there, depending on a host of factors—age, number of years trying, status of fallopian tubes, status of sperm—women can proceed with standard fertility treatments, like oral medication and IUI.

However, while it is the most invasive, “IVF has the best results in the majority of women with endometriosis,” says Daniel Kort, associate medical director and practice director at Neway Fertility in New York City.

Bottom line

Endometriosis can be a real pain—literally and figuratively—and infertility is one of the most common complications associated with it. Fortunately, with a little help from your friends a reproductive endocrinologist, it’s still possible to conceive if you’ve developed endometriosis infertility.

Lisa Milbrand

Lisa Milbrand writes about parenting and fertility topics for major websites and magazines. She’s the author of the upcoming book, Baby Names With Character—and the mom of two amazing girls.