Approximately 5 million women in North America have endometriosis. Symptoms can range from mild to severe and commonly include painful menstrual cramps (dysmenorrhea), pelvic pain, heavy menstrual bleeding, pain during intercourse or bowel movements and infertility.
Although endometriosis is common, it’s also widely misunderstood and often misdiagnosed. Education is important to increase awareness. We recently joined Dr. Christine Metz, Investigator at the Feinstein Institute for Medical Research and Professor at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, for a Q&A session on the topic of endometriosis. Dr. Metz shared some valuable information and insights.
What is endometriosis?
Endometriosis is characterized by the growth of endometrial tissue or lesions outside of the uterus. These lesions can grow on the lining of the pelvis, internal organs (e.g. the outside of the uterus, ovaries, Fallopian tubes and rectum). In some women, lesions can grow on more distant areas of the body, including the diaphragm, lungs, kidneys and brain.
What causes endometriosis?
The cause of endometriosis is not completely understood. However, many researchers believe that it arises after abnormal menstrual flow where menstrual blood is carried through the fallopian tubes into the pelvic cavity instead of exiting through the vagina. Like the endometrium, which sheds monthly, endometriosis lesions bleed in response to monthly hormone fluctuations. Other factors that may influence endometriosis are genetics and environmental and immune system factors.
How is endometriosis diagnosed?
One of the most frustrating problems for patients with endometriosis is delayed diagnosis, which can take up to 10 years. The diagnosis of endometriosis requires laparoscopic surgery with pathology confirmation of the biopsy specimens. Early diagnosis by a doctor who specializes in treating endometriosis patients is important because early treatment can dramatically improve patient outcomes. 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 the reproductive organs. A standard ultrasound imaging test 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, 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 that allows the surgeon to view inside your abdomen (laparoscopy). 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. 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 need only one surgery.
Do pain and other symptoms correlate with the severity of endometriosis?
No. Pain and other symptoms do not always correlate with the severity of the disease.
What are the treatments for endometriosis?
While there is no cure for endometriosis, treatments include non-steroidal anti-inflammatory (NSAID) drugs and other pain relievers, hormonal contraceptives (e.g. birth control pills or vaginal rings), other hormonal agents (e.g. gonadotropin-releasing hormone (GnRH) agonists and antagonists, androgenic agents, progestins and Danazol) and surgery to remove the lesions or the uterus (in severe cases only).
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.
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) to help ease painful menstrual cramps.
Your doctor may recommend hormone therapy in combination with pain relievers if you’re not trying to get pregnant.
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:
Birth control pills, patches and vaginal rings help control the hormones responsible for the buildup of endometrial tissue each month. Many 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 in some cases.
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. Menstrual periods and the ability to get pregnant return when you stop taking the medication.
A variety of progestin therapies, including an intrauterine device with levonorgestrel (Mirena, Skyla), contraceptive implant (Nexplanon), contraceptive injection (Depo-Provera) or progestin pill (Camila), can halt menstrual periods and the growth of endometrial implants, which may relieve endometriosis signs and symptoms.
. 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.
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 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 pain.
Endometriosis can lead to 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, 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.
Removal of the uterus (hysterectomy) can sometimes be used to treat signs and symptoms associated with endometriosis, such as heavy menstrual bleeding and painful menses due to uterine cramping, in those who don’t want to become pregnant. 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.1 250