Let’s Talk About Endometriosis Signs and Symptoms
How do you know when it’s run-of-the-mill period pain—or something more? We asked the experts what to look out for with this chronic condition.
If you’re a woman, you’re probably intimately familiar with the abdominal pain and cramps that pop up once a month during your period. Generations of women have been taught that it’s normal to feel menstrual pain—but a new wave of doctors say that’s not always the case: Sometimes, pelvic pain can be a sign of a serious condition called endometriosis, and if you don’t address it quickly, your future fertility could be at risk. These are some of the signs and symptoms that something more than just “period pain” is going on.
Our Pro Panel
We went to some of the nation’s top experts in endometriosis to bring you the most up-to-date information possible.
Ritchie Delara, M.D.
Minimally Invasive Gynecologic Surgeon, Department of Obstetrics and Gynecology
University of Colorado Anschutz Medical Campus
Mary Jane Minkin, M.D.
Clinical Professor of Obstetrics, Gynecology, and Reproductive Services
Yale School of Medicine
New Haven, CT
Stacey Missmer, Sc.D.
Professor, Department of Obstetrics, Gynecology, and Reproductive Biology
Michigan State University
Grand Rapids, MI
Experts think it’s something called retrograde menstruation, when menstrual fluid flows upwards rather than down and out of the body. That fluid is released into the pelvic cavity, where endometrial cells attach to the walls of other organs and start growing.
Partly because symptoms can mimic other disorders, and partly because 20% to 25% of women who have endometriosis are asymptomatic, the condition can be hard to identify. Between 30% and 50% of women with endometriosis have infertility issues and discover the condition when they try to get pregnant.
Let’s start with all women! After that, those with autoimmune disease, chronic inflammatory conditions, or women who have previously had pelvic surgery are all at higher risk for developing this condition. There appears to be a genetic predisposition as well.
The only way to conclusively diagnose endometriosis is via laparoscopy: an operation in which small cuts are made in the abdomen and instruments including a tiny camera are inserted for visual information and to take tissue samples for lab analysis and confirmation.
What Is Endometriosis, Again?
To understand endometriosis, first you need to know about the endometrium: That’s the lining inside the uterus that builds up once a month to allow for the implantation of a fertilized egg in the womb. If there’s no fertilized egg, there’s no need for a cushy lining, so the body sheds that layer—also know as having your period if you’re a woman. What’s shed is a mixture of blood, vaginal secretions, and endometrial cells.
But sometimes, the blood flow gets mixed up, and instead of flowing out, it flows up, going back through the fallopian tubes and into the pelvis. Endometrial cells that mistakenly ended up in the pelvis can attach onto its walls, as well as the outside of the uterus, the fallopian tubes, or any of the organs within the pelvis. Those adventurous cells aren’t where they’re supposed to be, but they still try to perform the task they were designed for, and that is to collect blood to form a lining and release the blood if there’s no baby on board.
That’s what endometriosis is: The growth of endometrial cells and development of thick tissue outside of the uterus that can lead to inflammation, lesions, and scarring. This tissue can grow on other organs, reducing blood flow and raising the risk of fertility issues. Endometriosis can cause intense pain—or none at all.
Who Is at Risk for Endometriosis?
The biggest risk factor for this condition is being female (not much you can do there!). There also seems to be a genetic component involved, so if your mother, aunt, or sisters have endometriosis, you have a higher likelihood of getting it, too.
Experts estimate that 11% of reproductive-age women have endometriosis worldwide, yet here in the U.S., it can take up seven to 12 years for a proper diagnosis. That decade of pain can be attributed to a mix of factors, including limited access to care, a stigma around pelvic pain and menstruation-related complaints, and doctors who don’t fully understand how to treat it.
What Causes Endometriosis?
Experts suspect endometriosis is caused by something know as retrograde menstruation. This is when menstrual fluid (blood, vaginal fluid, and endometrial cells) flows upwards rather than down and out of the body. In retrograde menstruation, the fluid is released into the pelvic cavity, overwhelming the body’s ability to remove it. This gives the endometrial cells the opportunity to find a new home. And that’s the start of endometriosis.
Additionally, endometriosis can happen when endometrial cells are released into the abdomen during a surgery, such as a c-section. There are also theories that involve cells outside of the uterus mimicking endometrial cells when they’re activated by certain hormones, like estrogen.
What Are the Symptoms of Endometriosis?
For women who have severe cases of endometriosis, their main symptom is pain which can express itself in several different ways. Here’s what to look for.
Chronic pelvic pain: There may be dull cramping throughout a woman’s cycle, not only when she is bleeding. Those who suffer from chronic pelvic pain (40% to 50% of those with endometriosis) often report that it gets worse when they have their period.
Constipation: If endometriosis occurs on the bowels or lower intestine, it can lead to constipation.
Heavy menstrual bleeding: Symptoms of so-called menorrhagia can include needing to use double sanitary protection (like a tampon and a pad), bleeding for more than seven days, passing blood clots larger than a quarter, and soaking through at least one pad or tampon every hour for several hours. Drop everything and go to the doctor ASAP if you have menstrual bleeding so bad that you’re soaking through one pad or tampon every hour for more than two hours, bleeding between periods, or bleeding post-menopause. These can be symptoms of endometriosis, but also symptoms of other issues, including endometrial cancer.
Infertility: Between 30% and 50% of women who have endometriosis suffer from infertility issues. The causes are still being debated, but it could be that the endometriosis messes with the jobs of the ovaries and fallopian tubes. It could also be due to endocrine (hormone) or ovulatory disorders which interfere with the release and fertilization of healthy eggs. Or the normal shedding of the endometrial layer in the uterus is disrupted if endometriosis is present, and that causes infertility.
Painful sex: Between 40% and 50% of women with endometriosis report having deep dyspareunia, which is the fancy term for painful sex during deep penetration. So how do you know if pain during sex is related to endometriosis? If you have a burning sensation when your partner is first entering you, that’s not probably endometriosis. If it is a knife-stabbing feeling when a partner is thrusting deeper, that’s a red flag for the condition.
Sharp lower abdominal pain: This can be caused by an ovarian cyst that started as endometriosis. It can also be caused by endometriosis that attaches itself to two different organs, like an ovary and the large bowel, acting like connective tissue that binds these organs to each other. When that’s jostled around, say during sex or a bowel movement, it can cause pain.
Painful urination: If endometriosis shows up outside the bladder, it can make urination painful, or blood can show up in the urine.
Severe cramping: Known as dysmenorrhea, this affects 60% to 80% of women with endometriosis. To expel the endometrial lining, the uterus contracts. What triggers those uterine contractions are prostaglandins, which are hormone-like compounds that can cause pain and inflammation. More prostaglandins are linked to more painful menstrual cramps, and endometriosis is linked with a higher level of prostaglandins.
If you’re saying to yourself: “Wow, it wouldn’t dawn on me to go see my gynecologist if I’m having poop problems—I’d see a gastroenterologist!” you’ve now identified one of the challenges with endometriosis. Because of the nature of the disease, its symptoms can cross over into other conditions, making it hard to get to the root of the issue. Without a specific screening test for endometriosis, it may take some trial and error before you receive a correct diagnosis.
Despite these symptoms, 20% to 25% of endometriosis patients are asymptomatic. For them, the discovery often comes when they’re trying—and failing—to get pregnant. Still, it is definitely possible to get pregnant if you have endometriosis, and it’s something you and a reproductive endocrinologist and fertility specialist can discuss.
Asymptomatic patients may also learn about their endometriosis if the tissue mass gets very large and leads to excessive bloating. Other women find out when they have pelvic surgery for something else—such as a tubal ligation, or to have an appendix removed—and the surgeon sees the endometriosis.
How Is Endometriosis Treated?
Before we get into the nitty gritty, it’s worth noting that the prevailing wisdom dictates that doctors begin treating endometriosis before there’s a definite diagnosis. That’s because the only way to be sure that it’s present is to do a laparoscopy, a minimally invasive surgery in which a long thin camera and other tools are inserted into the pelvis through small incisions in the abdomen, and tissue samples are taken and studied by a pathologist. The procedure is expensive and time-consuming, so doctors may sometimes decide to begin treatment if all other indications are for endometriosis.
So what might some of those treatments be?
Non-Steroidal Anti-Inflammatory Drugs
The first line of defense is NSAIDs, or nonsteroidal anti-inflammatory drugs, which block the body’s production of the hormonal compound prostaglandin, thus cutting down on pain, inflammation, and cramping. NSAIDs are most effective if you start to take them before your period starts. Talk to your doctor about dosage. Don’t take more than is listed on the label unless directed by your doc, though he or she may want to bump you up to the prescription type.
Contraceptives that contain hormones, such as the pill, patch, ring, shots, or a hormonal IUD can treat endometriosis by managing a woman’s cycle or eliminating menses altogether.
Nonsteroidal Aromatase Inhibitor
A doctor may also opt to put you on a short stint of a nonsteroidal aromatase inhibitor, which is a class of drugs that prevents the cells in the body from making estrogen or by suppressing estrogen production. It essentially creates a menopause-like state. Doctors are wary of using it long-term because, down the road, estrogen suppression can lead to issues like osteoporosis, heart disease, and cognitive decline. But in some cases, turning off the estrogen gives the body time to “clean out” the endometriosis.
If medical remedies don’t work, surgery’s an option. Doctors typically do minimally invasive surgery and either cut out or laser off the endometriosis that they see. The good news: It can provide immediate relief of the symptoms. Bad news: For 40% to 80% of women, surgery doesn’t provide a total cure, and pain returns within two years of the procedure. This happens because there can be areas of endometriosis so small that the surgeon missed them.
Lifestyle Changes to Treat Endometriosis
Beyond meds and surgery, researchers are investigating the role genetics play in endometriosis in hopes that it can them predict who will develop it, and aid in the creation of highly effective treatments, too. In the meantime, lifestyle changes may also help control the condition.
For example, we know that endometriosis is an inflammatory disease, and that inflammation can exacerbate painful symptoms. So reducing the amount of inflammatory foods (such as red meat and alcohol) in your diet can help, as can adding in anti-inflammatory foods like salmon, nuts, and olive oil.
What’s more, exercise—something you may feel challenged to do when dealing with chronic pain—may help to ease some symptoms, like cramping and bloating. You don’t have to go all-in on marathon running or kickboxing to see a positive effect: Just 30 minutes of moderate exercise daily, like walking or jogging, can help ease your symptoms while improving your overall health and fitness.
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