Endometriosis is a puzzling hormonal and immune system disease in which tissue like that which lines the inside of the uterus (endometrium) grows outside the uterus. It affects girls and women from before a first menstrual period to postmenopause and can cause pain, infertility, and other problems. There are an estimated more than six million girls and women in the United States alone who have endometriosis.
The most common symptoms of endometriosis are pain before and during menstrual periods, pain during or after sexual activity, infertility, fatigue, and heavy bleeding. Other symptoms such as lower-back pain with periods and intestinal upset with periods (including diarrhea, painful bowel movements, and/or constipation) are also common.
Many with endometriosis also experience a range of immune disorders, including allergies, asthma, eczema, and certain autoimmune diseases. Other symptoms may include irregular bleeding, pain related to urination, yeast infections (gastrointestinal or vaginal), and abdominal bloating. Infertility affects 30 to 40 percent of women with endometriosis, and about a third of women with infertility have endometriosis. (If you know you want to conceive, be aware that delay in diagnosis and treatment may make pregnancy less likely if the disease advances.)
Women and girls with endometriosis appear to be at higher risk for developing autoimmune diseases such as chronic fatigue syndrome, fibromyalgia, hypothyroidism, lupus, multiple sclerosis, rheumatoid arthritis, and Sjögren’s syndrome. Currently, researchers are studying whether there is a greater risk for certain types of cancers. Because of these risks, and because symptoms seem to worsen with time, early diagnosis is important.
Like the lining of the uterus, endometrial growths usually respond to the hormones of the menstrual cycle, building up tissue and then breaking it down. The result is internal bleeding, inflammation of the surrounding areas, and formation of scar tissue and adhesions. Complications of endometriosis can include formation and even rupture of cysts (which can spread endometriosis to new areas), intestinal bleeding or obstruction, or interference with bladder function. Symptoms often worsen with time, though cycles of remission and recurrence are sometimes the pattern.
The extent or size of endometrial growths may not have any correlation with the intensity of pain. Even tiny growths can produce substances called prostaglandins that are involved in pain (as well as in menstrual cramps).
Endometrial growths (also referred to as nodules, tumors, lesions, or implants) are usually inside the abdomen—on the ovaries, in the fallopian tubes, in the ligaments supporting the uterus, in the area between the vagina and the rectum, on the outer surface of the uterus, and on the lining of the pelvic cavity. The implants can also be found in internal abdominal surgery scars, or on the bladder, intestines, vagina, cervix, and vulva. Rarely, they develop in the lung, arm, thigh, and elsewhere in the body.
“Don’t be a baby, honey; all girls get cramps. Take two aspirin and go back to class,” the nurse at my high school told me when I was bent over double in tears...I’m not a baby. I’m not a hypochondriac...It took six years to find out. Looking back, I wish I had been a more aggressive patient. I should never have allowed myself to believe these occurrences were all in my head...Don’t listen to the people who tell you to go away. Be persistent. Listen to your body.
Endometriosis is a major factor in decreasing the quality of life for many girls and women. It can be chronic and its seriousness is often underestimated.
I was diagnosed too late, though I complained bitterly about very painful, heavy periods since my midteens. I think it’s disgraceful that doctors aren’t more interested in treating this disease before things get so out of hand...I am 36 and too destroyed (physically and emotionally) to carry on the fight to preserve my fertility.
Many doctors still don’t take menstrual pain seriously. The average time between onset of symptoms and diagnosis is more than nine years because doctors are slow to diagnose and, in part, because girls and women delay reporting their symptoms. A compelling reason to push for earlier diagnosis is that women who are not diagnosed early are more likely to end up having a hysterectomy.
A definitive diagnosis of endometriosis currently requires a laparoscopy—an outpatient surgical procedure done under anesthesia, in which the patient’s abdomen is distended with carbon dioxide and the abdominal organs are checked by using a laparoscope (a fiber-optic tube with a light in it). Though growths can sometimes be detected during a manual pelvic exam or on ultrasound, endometriosis is sometimes confused with other disorders that have similar symptoms (PID, ectopic pregnancy, cysts, appendicitis, diverticulitis, irritable bowel syndrome, or even cancer).
Medical Treatments for Endometriosis
There are a number of treatments for endometriosis, but not one that works for everyone. The most important thing to know is that you must educate yourself and make your own decisions about your treatments, and find the right health care practitioner(s) for you. In the process, you may want to consider your age, your symptoms, where and how severe the growths are, whether or not you want to get pregnant, your past experiences with hormones, and family history.
Hormonal treatments aim to stop or stabilize the production of various hormones for as long as possible. Recently, aromatase inhibitors have also been used to stop estrogen production in lesions and in fat cells. Hormonal treatments include gonadotropin-releasing hormone (GnRH), agonists (such as Lupron), testosterone derivatives (danazol), progesterone-like drugs (Provera), the Mirena IUD (which releases a progestogen, a progesterone-like substance), and oral contraceptives. New drugs are currently in development. Medications can be very expensive, and all cause side effects that are problematic for some women. All tend to work while you are taking them, but the disease usually returns when you stop.
Surgery ranges from conservative (removing growths) to radical (hysterectomy and removal of the ovaries). Radical surgery has been called the definitive cure for endometriosis, but the disease can continue or recur even when the ovaries are removed with the uterus. Minimally invasive gynecologic surgery through the laparoscope has largely replaced major abdominal surgery. As with any surgery, the skill and experience of the surgeon are of paramount importance.
Complementary medicine—especially nutritional approaches, traditional Chinese medicine, environmental medicine, and other treatments—has proved helpful for some women. Contact the Endometriosis Association for more information and refer to comprehensive books on the subject.
Connecting with other women who also have endometriosis can be very helpful. One way is through the Endometriosis Association Facebook page or local meet-ups. Getting support can decrease feelings of isolation and provide opportunities to counteract misinformation or a lack of information, as well as to share experiences with others who understand what you’re going through.