Chances are you’ve heard of endometriosis, the common disorder that affects 176 million(!) women around the world. But could you describe the condition to a friend? More importantly, would you even know if you had it?
According to Kathy Huang, MD, director of the Endometriosis Center at New York University Langone Health, plenty of women live with the painful condition for years before being diagnosed. Below, we explain why that is, plus everything else you need to know about endometriosis.
What exactly is endometriosis?
Endometriosis is the growth of the uterine lining, called endometrial tissue, outside of the uterus. Though it’s most common for endometrial tissue to grow nearby — say, in the fallopian tubes, ovaries, or pelvic cavity — it’s not impossible for it to travel elsewhere in the body.
“Endometrial tissue can really be found anywhere,” Dr. Huang said. “It can grow in the chest, the colon, the kidney, anywhere.”
The abnormal endometrial tissue that grows elsewhere in the body acts just like normal endometrial tissue, meaning it bleeds every time a woman gets her period. That bleeding results in internal scarring, which can cause tissues and organs to stick together over time.
What causes endometriosis?
Although the exact cause of endometriosis is unknown, the most popular theory is that the disorder follows from something called retrograde menstruation, which is basically exactly what it sounds like. “Retrograde menstruation is when you menstruate and some of the blood flows backward into the body cavity and sticks around,” Dr. Huang explained. That blood contains endometrial cells that then settle on pelvic organs (or travel elsewhere in the body) and continue to grow — and bleed — with each subsequent menstrual cycle.
Good to know: Retrograde menstruation is actually super common. Most women experience it to some degree, but they won’t all get endometriosis.
So, who does get endometriosis?
There are a handful of risk factors for endometriosis, including starting your period at an early age, never giving birth, having higher levels of estrogen in your body, and having close relatives (think: moms, sisters) who also have the disease.
Since endometriosis is a hormone-responsive disease, it’s only seen in women who are menstruating. “When you go into menopause, the endometriosis should no longer be active since those cells shouldn’t be responding to hormones,” Dr. Huang said. “The only exception might be if you’re taking exogenous hormones during menopause.”
What are the most common symptoms of endometriosis?
Pelvic pain is at the top of the list. Painful sex, painful urination, and painful bowel movements are also common if the endometriosis is affecting the vaginal wall, bladder, or bowels.
“The first question I always ask is whether a patient has painful periods,” Dr. Huang said. “I also ask if she experiences the pain when she isn’t on her period. The next question is whether she has painful intercourse, urination, or bowel movements. The more ‘yeses,’ the higher the likelihood that she has endometriosis.”
Also frustrating: Endometriosis can make it more difficult for women to conceive, though experts don’t know exactly how the disease contributes to infertility.
“In a case where the endo blocks both of the fallopian tubes, for example, a patient would need IVF,” Dr. Huang said. “But for the most part we say that endo makes it harder for patients to get pregnant, not that they can’t get pregnant.”
How is endometriosis diagnosed and treated?
Ultrasounds and MRIs are the most common methods used for endometriosis diagnosis (pelvic exams are only useful if the patient has cysts). “I prefer MRIs to ultrasounds because ultrasounds are often transvaginal, which is far more invasive,” Dr. Huang said. “In a pelvic MRI, nothing is going into your body.”
If the scan confirms a diagnosis, patients are typically offered a couple of treatment options. If the pain is mild, over-the-counter pain relievers (like Aleve, Advil, and Motrin) may provide some relief. Hormonal contraceptives like birth control pills and vaginal rings can also help regulate the hormones that influence endometrial tissue growth and the pain associated with it.
“The only caveat is that a lot of endo patients are trying to conceive, so we can’t put them on birth control pills,” Dr. Huang said. “If you’re young and have mild pain, I would start with medication and then move on to surgery if needed.”
What does surgery for endometriosis entail? “We basically go in to resect, or cut out, the endometriosis, removing the whole lesion,” Dr. Huang explained. Doctors make sure to keep the uterus and ovaries intact in women who plan to get pregnant.
More extreme approaches include a hysterectomy (surgical removal of the uterus) and/or a oophorectomy (surgical removal of the ovaries), though both surgeries are being phased because of their severity and side effects, such as infertility and early menopause.
Why is it that so many women have endometriosis for years before being diagnosed?
Blame it on stigma, lack of education, and lack of awareness.
“A lot of girls growing up think that painful periods are normal, so they just continue to assume that what they’re feeling is normal,” Dr. Huang said.
General physicians may also not think to dive deeper when patients present them with symptoms like painful periods.
Just remember: Pelvic pain doesn’t always signal endo. “I don’t want everyone to think they have endometriosis if they experience painful periods or intercourse,” Dr. Huang said. “It just means that something may be off and you need to be evaluated.”