Endometriosis signs and symptoms explained
The condition is hard to diagnose — and more common than most women realize. Proper care and relief are possible if you know what to look for.
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As many as 1 in 10 menstruating women and girls have endometriosis, a disorder in which tissue similar to the uterine lining grows outside the uterus. This might cause pain, difficulty getting pregnant or both. Studies have found that delays in getting a diagnosis range from 6 to 11 years, partly because the condition is so difficult to diagnose.
“As common as endometriosis is, it’s often not on the forefront of physicians’ minds,” explains Latasha Murphy, MD, a gynecologic surgeon at Mercy Medical Center in Baltimore, Maryland. Unlike many other conditions, there aren’t laboratory tests that can diagnose it, and it won’t show up on imaging tests unless it’s severe. “The main symptom,” says Dr. Murphy, “is pain, which is easy for both doctors and patients to dismiss as simply being due to a woman’s menstrual cycle.”
Yet it’s important to get endometriosis accurately diagnosed and treated, because it can affect fertility and quality of life. Here’s what you need to know.
What is endometriosis?
Endometriosis is a condition where tissue similar to the uterine lining grows outside the uterus, usually on other reproductive organs. Common places this might occur include the ovaries, the outer surface of the uterus and the fallopian tubes — and rarely, it may end up in the intestines, bladder or lungs, says Mary Jane Minkin, MD, clinical professor of obstetrics and gynecology at Yale School of Medicine in New Haven, Connecticut. This tissue can also swell and bleed during the menstrual period, which causes pain. It’s not exactly clear why some women are susceptible to endometriosis, but it may be due, in part, to genetics or problems with the immune system.
What causes endometriosis?
It’s not quite clear what causes endometriosis. There are a few theories:
Retrograde menstrual flow. This means that when a woman’s uterus sheds its lining, some of it flows back through the fallopian tubes into other parts of the body, such as the pelvis.
Genetics. Endometriosis does run in families, so there may be a gene or genes that predispose some women to this condition.
Problems with the immune system. The body’s immune system may fail to identify and clear out any endometrial tissue that grows outside of the uterus.
Surgery. During a cesarean section or hysterectomy, endometrial cells may be picked up and moved by mistake.
What are the symptoms of endometriosis?
Common endometriosis symptoms women experience include:
Painful periods and/or abdominal pain. Normal period cramps can be relieved with analgesics, such as ibuprofen, and heating pads (like Sunbeam Advanced Heat Heating Pad, CVS Health Series 500 Extra Long Heating Pad or premium Sunbeam king-size heating pad with XpressHeat). But pain from endometriosis is of a different order. “This pain can be so bad it might keep you home from work or school,” says Dr. Murphy.
Chronic lower back or pelvic pain.
Pain during or after sex. While some women may experience discomfort at the moment of penetration, endometrial pain is deeper and persists throughout sex.
Painful bowel movements during a period.
Gastric upset, such as diarrhea, constipation, bloating and nausea, all of which may be more noticeable during one’s period.
Bleeding or spotting between periods.
Difficulty getting pregnant.
How is endometriosis diagnosed?
There are a few ways that health care providers can diagnose endometriosis, including:
A pelvic exam. Doctors will feel for large cysts or scars that may indicate endometriosis. “Unfortunately, if the tissue is tiny enough, they won’t be able to feel it with their hands,” explains Dr. Minkin.
An ultrasound. The doctor may either insert a scanner into the vagina — called a transvaginal ultrasound — or use an ultrasound wand across the belly. This won’t definitively let a physician know that someone has endometriosis, but it can rule out other conditions, such as an ovarian cyst, says Dr. Minkin.
Laparoscopy. This is a procedure where the doctor inserts a small lighted instrument, called a laparoscope, into the abdomen to see if there is endometriosis tissue inside the pelvic area. It’s the gold standard to determine whether someone has endometriosis, says Dr. Murphy.
How is endometriosis treated?
Treatment depends on the level of pain and whether the patient is trying to get pregnant, explains Dr. Murphy. In general, if a woman has mild endometriosis, treatment and medicines may include:
Over-the-counter pain relievers. “Endometriosis is an inflammatory disease, so [non-steroidal anti-inflammatory drugs], such as ibuprofen, can help,” says Dr. Murphy, though further action might be needed. Women can also try different types of Tylenol, like Extra Strength Tylenol Rapid Release Gels , Tylenol Extra Strength Caplets with 500 milligrams of acetaminophen or Extra Strength Tylenol PM pain reliever and sleep aid caplets. Always consult with a doctor first.
Birth control. Extended-cycle contraceptive pills, continuous contraceptive pills or using an intrauterine device (IUD) can decrease periods to four times a year or less, which can also decrease the growth of endometrial-like tissue.
A gonadotropin-releasing hormone agonist. This is a prescription medication that stops the body from making reproductive hormones, thus suppressing the growth of endometrial tissue. It puts the body into a state similar to menopause. Ironically, a doctor may recommend this if a woman is trying to conceive. If a woman stops taking it, her period will return and she may be more likely to get pregnant.
Surgery. If symptoms are more severe or a woman is struggling with infertility, she may need surgery, says Dr. Murphy. This surgical procedure, often done during laparoscopy, is where a surgeon uses a laser or other surgical instrument to remove the endometriosis patches as well as any scar tissue. If a woman’s pain is extreme and she does not want to get pregnant in the future, her doctor may also suggest a hysterectomy.
Can a woman get pregnant if she has endometriosis?
Absolutely. But she may find it harder to conceive. Endometriosis may affect about half of all women who struggle with infertility, according to the U.S. Department of Health and Human Services. There are a few reasons why:
Patches of endometriosis can block off the ovaries, which makes it harder for a sperm to find an egg.
Women with endometriosis may have an underlying immune system disorder that may affect the embryo.
The uterine lining doesn’t develop as it should.
In addition, it may be harder to stay pregnant. A 2016 study published in the journal Human Reproduction found that women with endometriosis were significantly more likely to have a miscarriage than women without the condition. Pregnant women with endometriosis are also at greater risk for pregnancy complications, such as premature birth, according to a 2017 study published in the journal Fertility and Sterility. It’s important to be monitored carefully by a physician throughout any pregnancy.
Can other therapies help with endometriosis symptoms?
There isn’t any solid research showing that therapies outside of conventional Western medicine help treat endometriosis. But some women report that gentle massage can ease discomfort.
A 2021 study published in the Journal of Alternative and Complementary Medicine found that adding twice weekly acupuncture sessions for eight weeks to an endometriosis care plan led to greater reported improvements in pelvic pain and quality of life.
Other research suggests trying magnesium, omega-3 fatty acids, vitamin B1, vitamin D or vitamin E supplements to help reduce cramps and relieve menstrual pain.* Women can also try various herbal supplements, such as such as pycnogenol, fennel or combination products, which might provide some relief from menstrual cramps.
This content is for informational purposes only and is not medical advice. Consult with your health care provider before taking any vitamins or supplements, and prior to beginning or changing any health care practices.
*These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure or prevent any disease.