by Dr. C.H. Weaver M.D. updated 6/2020
Endometriosis is a disorder in which tissue that normally lines the inside of the uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves the ovaries, fallopian tubes and the tissue lining the pelvis. Endometrial tissue thickens and breaks down with each menstrual cycle. The displaced endometrial tissue does the same and because it has no way to exit the body (menstruation) it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form and the surrounding tissue can become irritated and lead to the development of scar tissue that can cause pelvic tissues and organs to stick to each other.
Endometriosis can cause pain especially during a woman’s period and impact fertility.
The hallmark of endometriosis is pelvic pain, often associated with the menstrual period. Women with endometriosis typically describe menstrual pain that's far worse than usual.
- Painful periods (dysmenorrhea).
- Pain with intercourse.
- Pain with bowel movements or urination.
- Excessive bleeding. You may experience occasional heavy periods (menorrhagia) or bleeding between periods (menometrorrhagia).
Although the exact cause of endometriosis is not certain, possible explanations include:
- Retrograde menstruation. In retrograde menstruation, menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of out of the body. These displaced endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.
- Transformation of peritoneal cells. In what's known as the "induction theory," experts propose that hormones or immune factors promote transformation of peritoneal cells — cells that line the inner side of your abdomen — into endometrial cells.
- Embryonic cell transformation. Hormones such as estrogen may transform embryonic cells — cells in the earliest stages of development — into endometrial cell implants during puberty.
- Surgical scar implantation. After a surgery, such as a hysterectomy or C-section, endometrial cells may attach to a surgical incision.
- Endometrial cells transport. The blood vessels or tissue fluid (lymphatic) system may transport endometrial cells to other parts of the body.
- Immune system disorder. It's possible that a problem with the immune system may make the body unable to recognize and destroy endometrial tissue that's growing outside the uterus.
Several factors place you at greater risk of developing endometriosis, such as:
- Never giving birth
- Starting your period at an early age
- Going through menopause at an older age
- Short menstrual cycles — for instance, less than 27 days
- Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces
- Low body mass index
- Alcohol consumption
- One or more relatives (mother, aunt or sister) with endometriosis
- Any medical condition that prevents the normal passage of menstrual flow out of the body
- Uterine abnormalities
Endometriosis usually develops several years after the onset of menstruation (menarche). Signs and symptoms of endometriosis end temporarily with pregnancy and end permanently with menopause, unless you're taking estrogen.
Infertility: The main complication of endometriosis is impaired fertility. Approximately one-third to one-half of women with endometriosis have difficulty getting pregnant. For pregnancy to occur, an egg must be released from an ovary, travel through the neighboring fallopian tube, become fertilized by a sperm cell and attach itself to the uterine wall to begin development. Endometriosis may obstruct the tube and keep the egg and sperm from uniting. But the condition also seems to affect fertility in less-direct ways, such as damage to the sperm or egg.
Even so, many women with mild to moderate endometriosis can still conceive and carry a pregnancy to term. Doctors sometimes advise women with endometriosis not to delay having children because the condition may worsen with time.
Ovarian cancer: Ovarian cancer does occur at higher than expected rates in women with endometriosis. But the overall lifetime risk of ovarian cancer is low to begin with. Some studies suggest that endometriosis increases that risk, but it's still relatively low. Although rare, another type of cancer — endometriosis-associated adenocarcinoma — can develop later in life in women who have had endometriosis.
To diagnose endometriosis and other conditions that can cause pelvic pain, your doctor will ask you to describe your symptoms, including the location of your pain and when it occurs.
Tests to check for physical clues of endometriosis include:
- Pelvic exam. During a pelvic exam, your doctor manually feels (palpates) areas in your pelvis for abnormalities, such as cysts on your reproductive organs or scars behind your uterus. Often it's not possible to feel small areas of endometriosis, unless they've caused a cyst to form.
- Ultrasound. This test uses high-frequency sound waves to create images of the inside of your body. To capture the images, a device called a transducer is either pressed against your abdomen or inserted into your vagina (transvaginal ultrasound). Both types of ultrasound may be done to get the best view of your reproductive organs. Ultrasound imaging won't definitively tell your doctor whether you have endometriosis, but it can identify cysts associated with endometriosis (endometriomas).
- Magnetic resonance imaging (MRI). An MRI is an exam that uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body. For some women, an MRI helps with surgical planning, giving your surgeon detailed information about the location and size of endometrial implants.
- Laparoscopy. In some cases, your doctor may refer you to a surgeon for a procedure (laparoscopy) that allows the surgeon to view inside your abdomen. While you're under general anesthesia, your surgeon makes a tiny incision near your navel and inserts a slender viewing instrument (laparoscope), looking for signs of endometrial tissue outside the uterus.
A laparoscopy can provide information about the location, extent and size of the endometrial implants to help determine the best treatment options. Your surgeon may take a tissue sample (biopsy) for further testing. Often, with proper surgical planning, your surgeon can fully treat endometriosis during the laparoscopy so that you only need one surgery.
Treatment for endometriosis usually involves medication or surgery. The approach you and your doctor choose will depend on how severe your signs and symptoms are and whether you hope to become pregnant. Doctors typically recommend trying conservative treatment approaches first, opting for surgery if initial treatment fails.
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Pain medication: Your doctor may recommend that you take an over-the-counter pain reliever, such as the nonsteroidal anti-inflammatory drugs (NSAIDs) ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve, others), to help ease painful menstrual cramps. If you find that taking the maximum dose of these medications doesn't provide full relief, you may need to try another approach to manage your signs and symptoms.
Hormone therapy: Supplemental hormones are sometimes effective in reducing or eliminating the pain of endometriosis. The rise and fall of hormones during the menstrual cycle causes endometrial implants to thicken, break down and bleed. Hormone medication may slow endometrial tissue growth and prevent new implants of endometrial tissue.
Hormone therapy isn't a permanent fix for endometriosis. You could experience a return of your symptoms after stopping treatment.
Therapies used to treat endometriosis include:
- Hormonal contraceptives. Birth control pills, patches and vaginal rings help control the hormones responsible for the buildup of endometrial tissue each month. Most women have lighter and shorter menstrual flow when they're using a hormonal contraceptive. Using hormonal contraceptives — especially continuous cycle regimens — may reduce or eliminate pain for some women.
- Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists. These drugs block the production of ovarian-stimulating hormones, lowering estrogen levels and preventing menstruation. This causes endometrial tissue to shrink. Because these drugs create an artificial menopause, taking a low dose of estrogen or progestin along with Gn-RH agonists and antagonists may decrease menopausal side effects, such as hot flashes, vaginal dryness and bone loss. Your periods and the ability to get pregnant return when you stop taking the medication.
- Progestin therapy. A variety of progestin therapies, including an intrauterine device (Mirena), contraceptive implant, contraceptive injection (Depo-Provera) or progestin pills, can halt menstrual periods and the growth of endometrial implants, which may relieve endometriosis signs and symptoms.
- Aromatase inhibitors. Aromatase inhibitors are a class of medicines that reduce the amount of estrogen in your body. Your doctor may recommend an aromatase inhibitor along with a progestin or combination hormonal contraceptive to treat endometriosis.
Conservative surgery for endometriosis
If you have endometriosis and are trying to become pregnant, surgery to remove the endometriosis implants while preserving your uterus and ovaries (conservative surgery) may increase your chances of success. If you have severe pain from endometriosis, you may also benefit from surgery — however, endometriosis and pain may return.
Your doctor may do this procedure laparoscopically or, less commonly, through traditional abdominal surgery in more-extensive cases. Even in severe cases of endometriosis, most women can be treated with laparoscopic surgery.
In laparoscopic surgery, your surgeon inserts a slender viewing instrument (laparoscope) through a small incision near your navel and inserts instruments to remove endometrial tissue through another small incision. After surgery, your doctor may recommend taking hormone medication to help improve your pain.
Women with endometriosis can have trouble conceiving. If you're having difficulty getting pregnant, your doctor may recommend fertility treatment supervised by a fertility specialist. Fertility treatment ranges from stimulating your ovaries to make more eggs to in vitro fertilization. Which treatment is right for you depends on your personal situation.
Hysterectomy with removal of the ovaries
Surgery to remove the uterus (hysterectomy) and ovaries (oophorectomy) was once considered the most effective treatment for endometriosis. But endometriosis experts are moving away from this approach, instead focusing on the careful and thorough removal of all endometriosis tissue.
Having your ovaries removed results in menopause. The lack of hormones produced by the ovaries may improve endometriosis pain for some women, but for others, endometriosis that remains after surgery continues to cause symptoms. Early menopause also carries a risk of heart and blood vessel (cardiovascular) diseases, certain metabolic conditions and early death.
Even when the ovaries are left in place, a hysterectomy may still have a long-term effect on your health, especially if you have the surgery before age 35.
Finding a doctor with whom you feel comfortable is crucial in managing and treating endometriosis. You may want to get a second opinion before starting any treatment to be sure you know all of your options and the possible outcomes.