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One in 10 women suffer from endometriosis , so chances are you know someone with the super-painful pelvic condition (or at least you've heard Julianne Hough or Lena Dunham share their struggles). But for most women, the process of reaching a diagnosis—and ultimately finding relief from their painful symptoms—can take years. Some studies report it takes most sufferers eight to nine years between their first set of symptoms and an actual diagnosis.
But getting that diagnosis is crucial: Left untreated, endometriosis not only creates a life of chronic pain, which not only affects your mental, physical, and emotional health, but also significantly increases your risk of infertility, says Cara King, D.O., gynecological surgeon and associate professor at the University of Wisconsin–Madison. (In fact, it's why singer Halsey decided to freeze her eggs at 23 .)
And, because it sometimes displays no symptoms, it's crucial all women understand their risk and be their own patient advocate, says Sherry Ross, M.D., an ob-gyn and women's health expert at Providence Saint John's Health Center in Santa Monica, CA. (Related: Dangerous Myths Are Preventing Me from Getting the Endometriosis Care I Need )
Here, everything you need to know about endometriosis.
What is endometriosis?
Endometriosis is a painful condition wherein cells that are similar to the endometrium lining of the uterus grow and implant elsewhere—typically in your pelvis, like the ovaries, fallopian tubes, bowels, or bladder, but sometimes also the diaphragm or the lungs.
Like the uterine lining itself, these cells—often called implants—are also influenced by estrogen from the ovaries, which means when the hormone surges (like during your period), they'll breakdown and bleed just like in menstruation, explains Dr. King.
With no way for the implant cells to be excreted, though, the bleeding creates a spider web of scar tissue and inflammation, both of which lead to pain (in addition to the cramping from your uterus trying to expel its own lining). What's more, the condition can come along with large ovarian cysts—called endometriomas—and deeply infiltrate nodules, which can aggravate nerves and cause even more pain.
This discomfort is almost always the red flag that leads docs to diagnosis. "The most common symptom that most women are presented with initially are severe cramps during their periods," says Dr. King. In fact, 70 percent of teenage girls with painful period cramps are diagnosed with endometriosis, according to a 2015 study in the peer-reviewed journal Women's Health .
The pain can be mild, moderate, or severe, Dr. Ross adds, but it's most common before and during the period. Endometriosis can also cause painful sex, lower-back pain, and pelvic pain, along with pain during bowel movements and even urination.
What are the symptoms of endometriosis?
In addition to painful periods and pelvic pain, watch out for any other unexplainable discomfort, especially localized to your pelvic region, like with bloating or when going to the bathroom. If implants grow on nerves and ligaments, it can also create pain in your lower limbs. And again, since the cells can implant outside your pelvis, tell your gyno about any chest pains as well, Dr. Ross says. (Related: This Woman's Struggle with Endometriosis Led to a New Outlook On Fitness )
Endometriosis is also closely linked with infertility. About 40 percent of women with infertility also have endometriosis, and 30 to 50 percent of women with endometriosis may experience infertility, according to The American Society for Reproductive Medicine .
Most terrifying: Some women with endometriosis don't have any symptoms at all, Dr. Ross adds. (This camp is far smaller and often diagnosed as a result of learning they have infertility or an ovarian mass.)
Diagnosis can be tricky, even for specialists, Dr. Ross says. And treatment can be challenging and frustrating . But both docs agree you should talk to your ob-gyn if you have any alarming pains, particularly in the pelvic region and during your period. "If your period cramps are not relieved with [over-the-counter pain killers] or cause you to miss work or school, this is not normal and should be evaluated by a physician," Dr. King says.
What causes endometriosis?
We don't know why some women get endometriosis, but we do know there's a genetic risk—if you have one or more first-degree relatives (mom, sisters, aunts) with endometriosis, you're more likely to get it.Other things that increase your chances of developing it: starting your period at an early age, short durations between periods or bleeding for more than seven days, and uterine abnormalities. It's also more common in women who haven't given birth.
As far as doctors can tell, endometriosis can hit any woman anytime between getting her first period and menopause, and most women are actually diagnosed with the condition in their 30s or 40s, according to the American College of Obstetricians and Gynecologist s (ACOG) .
Can you lower your risk of endometriosis?
Because docs haven't pinpointed what exactly causes endometriosis, we don't yet know how to prevent it.
But you can mitigate your risk and symptoms, particularly if you're at high risk genetically. Many believe that keeping your estrogen levels low can help reduce your chances, Dr. Ross says, which means the birth control pill, regular exercise, and avoiding excessive alcohol and caffeine could all theoretically help. (Related: How to Balance Your Hormones Naturally for Lasting Energy )
How is endometriosis diagnosed and treated?
The only way to accurately diagnose endometriosis is through surgery, Dr. Ross says. This allows your doc to see the implants and scar tissue directly. But often a patient's history and pelvic exam will give a good sense of what's going on and docs can treat the symptoms.
The most common way that docs treat endometriosis is by prescribing medication for the pain and hormonal drugs like birth control to control the heavy bleeding. (Related: Docs Say the New FDA-Approved Pill to Treat Endometriosis Could Be a Game-Changer )
If the meds don't work or symptoms are severe, your doc may then consider surgery in the form of a laparoscopy to remove or burn off the [displaced uterine cells]. This helps treat the symptoms and increases the chance of getting pregnant for those having trouble conceiving due to the condition .
Unfortunately, according to ACOG , 40 to 80 percent of women will have pain again within two years of surgery, likely from cells that weren't visible or couldn't be removed during surgery. But even if it comes back, it's crucial to still treat endo early...
Here's why treatment is so important.
"The longer endometriosis is left untreated, the more it can influence the nerves and muscles of the pelvis, which can in turn lead to additional pain with certain movements and muscle spasm," Dr. King says. This damage is typically reversible once endo is cut out surgically, but the pain and dysfunction often requires additional therapy, including pelvic floor physical therapy, Dr. King says. (Related: Pelvic Floor Exercises Every Woman Should Do )
Plus, the scarring from untreated endo can increase chances of infertility, as the inflammation may damage the sperm or egg or interfere with their movement through the fallopian tubes and uterus, ACOG reports .
To top it off, Dr. Ross adds that endometriosis is associated with other female health problems and immune disorders, like asthma, allergies, multiple sclerosis, hypothyroidism, chronic fatigue syndrome, fibromyalgia, and ovarian and breast cancer. Catching one may help catch another.
It's typically reversible once endo is cut out surgically, but the muscle and nerve pain often requires additional therapy, including pelvic floor physical therapy, Dr. King says.