March is Endometriosis Awareness Month, and we want to hear YOUR stories about this under-discussed but surprisingly prevalent condition. Whether you went years without a diagnosis or got treatment right away, your story may help others seek the help they need — or even just remind them that they're not alone. Email us at shareyourstories@allure.com, and we may include you in a feature later this year.
Endometriosis has gotten a lot of attention recently, with stars like Lena Dunham, Padma Lakshmi, and Julianne Hough opening up about their personal struggles with the health condition. But hearing endometriosis referenced here and there and actually knowing the ins and outs of the condition are two different things — and it’s completely understandable if you’re a little hazy on the details.
For starters, endometriosis is a disorder in which the tissue that normally grows inside your uterus grows outside of it. Endometriosis can cause cysts and scar tissue to develop and often leads to severe pain. What's more, it impacts more than 11 percent women between the ages of 15 and 44 in the U.S., according to the U.S. Department of Health & Human Services (HHS).
It’s possible to have endometriosis and not know it, Jessica A. Shepherd, a gynecologist at Baylor University Medical Center at Dallas, tells Allure. That’s why it’s so important to be aware of the disorder and its symptoms. We asked Shepherd and Christine C. Greves, a gynecologist at the Winnie Palmer Hospital for Women & Babies in Orlando, Florida, about what every woman should know about endometriosis signs, diagnosis, and treatment.
First things first: What causes endometriosis?
Doctors aren’t sure of the exact cause of endometriosis, but as the HHS reports, researchers are considering the possible roles of hormones and genes. The condition is estrogen-dependent, meaning estrogen may encourage or exacerbate it, Shepherd explains, which could signal that its development is connected with hormonal imbalances. Additionally, endometriosis tends to run in families and may be genetic.
According to Greves, one theory is something called "retrograde menstruation." This describes the phenomenon in which blood from your period (which contains endometrial cells, or cells from the lining of your uterus) flows back into your pelvic cavity through the fallopian tubes instead of out through the cervix.
Another idea is that after some surgeries —a hysterectomy or cesarean section, for example — endometrial cells may sometimes attach to a surgical incision. Finally, the immune system may be responsible for endometriosis in some women: If it doesn't recognize endometrial tissue that grows outside of the uterus, it won’t destroy it, allowing it to grow.
What symptoms should be on my radar?
Endometriosis symptoms range in severity, and everyone with the condition experiences it differently. Pain is the biggest symptom: Patients often describe menstrual pain that's worse than what others with periods experience, as well as pain that gets worse over time. In addition, women with endometriosis may deal with chronic pelvic pain or pain during sex, while having a bowel movement, or while peeing. Greves points out that heavy periods and bleeding between periods may also occur.
Shepherd adds that sometimes, however, women with endometriosis may have no symptoms at all. What's more, symptoms of other diseases may be confused for signs of endometriosis and vice versa. It’s important to talk through any concerns with your doctor as they arise.
What factors increase my risk of developing endometriosis?
There are a few factors that can indicate that endometriosis should be on your radar more than that of the average woman. These include starting your period at a young age and having short menstrual cycles that are less than 27 days, Greves says. Shepherd adds that having a close family member with endometriosis can up your risk. According to Mayo Clinic, alcohol consumption, never having giving birth, high estrogen levels, a low BMI, and uterine abnormalities can also be risk factors.
What complications can endometriosis cause?
Up to 50 percent of women with endometriosis may have trouble getting pregnant, according to Mayo Clinic. To get pregnant, your egg has to be released from your ovary, travel down a fallopian tube, become fertilized by sperm, and attach itself to your uterine wall, Shepherd explains. But endometriosis can block the fallopian tube and prevent the sperm and egg from meeting. Endometriosis can also cause inflammation, which can lower the odds you’ll get pregnant. Still, many women with mild to moderate endometriosis can still get pregnant and carry the pregnancy to term, Shepherd says.
Greves points out that having endometriosis can also increase your risk of developing ovarian cancer. That said, the overall lifetime risk of developing ovarian cancer is relatively low to start with: The National Cancer Institute says that 1.3 percent of women will be diagnosed with it in their lifetime.
How is endometriosis diagnosed?
If you have one or multiple common symptoms, your doctor may suspect that you’re suffering from endometriosis, Greves says. But the way it’s definitively diagnosed is through a biopsy. In this case, the procedure is usually performed laparoscopically, meaning it’s done by making a small cut in your pelvis and using a laparoscope, a thin tool that has a tiny video camera and light on the end. The surgeon can look for signs of endometrial tissue with this tool and then remove a tissue sample for examination.
Doctors usually want to wait to go that route, though. First, they’ll likely do a pelvic exam to see if they can feel cysts (known as endometriomas) that form as a result of endometriosis or an ultrasound to look for those cysts first, Shepherd says. Greves adds that sometimes they may give you medication like combined oral contraceptives to see if it helps with your pain. But again, your doctor can’t get a proper diagnosis this way — the only way to do that is with the biopsy.
What are treatment options for endometriosis?
Treatment varies depending on your symptoms. Usually, doctors will recommend a nonsteroidal anti-inflammatory drug like ibuprofen as the first line of defense from pain, Greves says. According to Shepherd, your doctor may then recommend hormonal therapy of some kind to ease symptoms. Hormonal contraceptives like the pill, the patch, or the ring can help control the hormones that encourage the buildup of endometrial tissue each month during your cycle.
Hormonal IUDs, meanwhile, use progestin, which can stop your periods and the growth of endometrial implants. There are also gonadotropin-releasing hormone (GnRH) agonists, which can block the production of hormones that stimulate your ovaries and keep you from having a period, Greves explains. This can cause endometrial tissue to shrink, easing your symptoms in the process.
If your endometriosis is severe, your doctor may recommend removing the endometriosis lesions surgically, Shepherd says. However, doctors tend to view that as a later option after other treatments have been exhausted: “Usually, we prefer to maximize medical treatment and avoid repeated surgical intervention, given that it is a chronic disease,” Greves says.
What other support can people with endometriosis seek?
While there is no cure for endometriosis, there is an increasing menu of options for treating it. Open dialogue with your care providers is paramount: Together, you can come up with a treatment plan that works for you. But beyond the medical aspects of the condition, one key part of responding to a diagnosis of endometriosis is connecting with others who are dealing with it, too. This could mean taking part in local support groups, finding online communities or forums for patients, or engaging in advocacy and awareness-raising around the condition. Tapping into these networks can remind women dealing with the condition that they are not alone.
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