By Lisa Sousou
What is endometriosis?
March is National Endometriosis Awareness Month. Some 176 million women around the world, 5 million in the United States alone, are afflicted with this commonly painful, sometimes debilitating condition. Caused by tissue similar to the inside lining of the uterus (endometrium) growing outside of the uterus, endometriosis can commonly lead to very painful periods, chronic pelvic pain, painful intercourse, and sometimes infertility. In other cases, it can be present and cause no symptoms. The implanted tissue behaves like endometrium: it breaks down and bleeds during a women’s menstrual period. This can cause pain and scar tissue formation. Some places where endometriosis implants can be found include the ovaries, fallopian tubes, the lining of the pelvic cavity (peritoneum), or even on the intestines or bladder; in very rare cases, endometriosis has even been found in more distant organs, such as the lungs.
Among women who do have symptoms, pelvic pain is the most common symptom of endometriosis, and can be mild or severe. This includes painful menstrual periods, which can worsen over time; pain can also occur between periods, during intercourse, or even with bowel movements. In both women with and without symptoms, endometriosis can lead to difficulty becoming pregnant; infertility affects 30 to 50 percent of endometriosis patients.
Who gets endometriosis, and what causes it?
Globally, around 10 percent of all women have endometriosis. Among women with infertility or chronic pelvic pain, the percentage is much higher (up to 50 percent of women with infertility, and up to 70 percent of women and adolescents with pelvic pain). The condition is most commonly found in women and girls of reproductive age, but has been found even in girls who have not yet started menstruating, and in postmenopausal women.
Although endometriosis is very common, its cause is still not known for certain. One theory is that retrograde (backward) menstrual flow, from the uterus through the fallopian tubes and into the pelvic cavity, leads to the implantation of endometrial cells. There are other theories as well. There also appears to be a genetic component to the condition; a woman’s chance of endometriosis is increased if her mother or sister have it. Some other factors that increase risk of endometriosis include young age at first menstruation (before age 11), late menopause, heavy menstrual bleeding, and never having given birth. Risk is decreased among women who are older at first menstruation (over age 14), who have had multiple births, and who have breastfed for extended time periods.
How is endometriosis diagnosed?
If endometriosis is suspected, a pelvic exam will be performed. In some cases, a provider may be able to detect endometrial implants on exam, but often, pain on examination may be the only indicator. Imaging, such as pelvic ultrasound, may be done to rule out other causes for pain, but endometriosis is not usually detectable through imaging. Surgical exploration is the only way to be sure if it is present, but treatments for pain are often tried first without surgery if endometriosis is suspected.
How is it treated?
Non-surgical treatments for endometriosis can include:
- Pain medications: Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or naproxen, over-the-counter or in prescription doses, can help with pelvic pain and painful or heavy menstrual periods.
- Hormonal birth control: Options include the pill, the patch, the vaginal ring, contraceptive injections or implant, and intrauterine devices (IUDs). Some can (reversibly) stop menstruation entirely to give relief from painful and heavy periods.
- Other medications: GnRH agonists or antagonists, when taken for several months, can help relieve symptoms.
- Oral aromatase inhibitors may be used in severe cases.
A type of surgical procedure called laparoscopy can be used to find and remove endometriosis if it is severe or if medications do not help. Surgical treatment may also be recommended if endometriosis is suspected as a cause of infertility. Unfortunately, it is possible that endometriosis will return after laparoscopic treatment.
Hysterectomy (removal of the uterus) with or without oophorectomy (removal of the ovaries) can also be an option for women who do not plan to become pregnant in the future.
There is hope!
If these symptoms sound familiar to you, don’t wait. See your gynecologic provider promptly. Severe menstrual pain, painful intercourse, and pelvic pain are not normal, and are not just something that you have to live with. Not becoming pregnant after 6 months (if you are 35 or older) to a year (if you are under 35) is not usual and warrants further investigation. Early detection and treatment are important to help avoid progression of the disease and more severe symptoms. Endometriosis can be successfully treated. There is hope!
