Dear Alice,

My girlfriend has endometriosis and I want to know more about it. I know some of the basics, but want to learn everything. Can you suggest where I should go? Thanks.

Dear Reader, 

It shows how supportive you are to want to understand the scope of this health issue affecting your girlfriend. Endometriosis occurs when the tissue similar to that which lines the uterus (the endometrium) begins to grow in another part of the body. In most cases, this growth develops in the pelvic area: on the ovaries, the lining of the pelvic cavity, ligaments, or the fallopian tubes. Common symptoms of endometriosis can include extreme pelvic pain during menstruation, ovulation, and sex; excessive menstrual flow; fatigue; lower back pain; and infertility. This endometrial-like tissue usually behaves like the endometrium, responding to the hormones of the menstrual cycle. However, because the affected tissue is so linked to a person’s period, common treatment options often already exist within contraceptive methods and period management. There’s no known cure, and more research is needed to understand its causes. 

While endometriosis can present highly obvious symptoms, the issue is that sometimes it’s mistaken for other conditions that can cause pelvic pain, such as pelvic inflammatory disease (PID) or ovarian cysts. It may even be confused with irritable bowel syndrome (IBS), which can cause abdominal cramping. Endometriosis can also cause other serious problems, such as ruptured ovarian cysts and an increased risk of ectopic (tubal) pregnancy. Each month, a person with a uterus builds up tissue and sloughs it off. However, for those with endometriosis, the issue is growing outside of the uterus, leaving it no place to leave the body. As a result, internal bleeding, inflammation, cysts, and scar tissue can develop in the affected areas. The symptoms of this condition can be debilitating; it may interfere with normal daily activities, for days, weeks, and even months at a time. During a gynecological exam, health care providers may try palpating the abdomen or doing an ultrasound to help determine the cause of pelvic pain. However, sometimes there may be no symptoms at all. The only way to diagnose endometriosis for certain is via laparoscopy, a minor surgical procedure that allows the provider to insert a slender viewing instrument to check for endometrial-like tissue.  

 If your girlfriend would like to explore options for treatment or symptom relief, some of them include: 

  • Gonadotropin-releasing hormone (GnRH) medicines: This type of treatment sends the body into a “menopausal” state by preventing ovulation and menstruation, but it also can stop the growth of endometriosis. It’s available as a pill called elagolix, but can also come as a daily nasal spray, 1-month injection, or 3-month injection. Whichever form is accessed, it’s often advised to receive the treatment 6 months at a time, with many months in between treatments. Some side effects can include hot flashes, tiredness, problems sleeping, headache, depression, joint and muscle stiffness, bone loss, and vaginal dryness. 
  • Oral contraceptives: These medications, also known as birth control pills, help with endometriosis by making periods lighter, shorter, and more regular. To find out more about how they work and possible side effects, check out the Q&A Side effects of birth control pills
  • Progesterone and progestin: These hormonal birth control methods provide relief in a similar manner to oral contraceptives through their shortening and sometimes altogether stopping of periods. They can be available as a pill, patch, injection, or intrauterine device (IUD).  
  • Danazol: This treatment stops the release of hormones involved in the menstrual cycle. The side effects of this treatment are often more severe than other options and can include oily skin, pimples or acne, weight gain, muscle cramps, tiredness, smaller breasts, sore breasts, headaches, dizziness, weakness, hot flashes, and a deepening of the voice. 
  • Surgery: Laparoscopy, mentioned previously, can also be used to remove endometrial-like tissue by cutting it out or vaporizing it with intense heat. As an alternative, laparotomy is performed when the endometrial-like tissue is too small to see in a laparoscopy. Sometimes a hysterectomy (removal of the uterus) may also be performed; in some cases, the ovaries and fallopian tubes may also be removed. Surgery is often a last resort and doesn’t guarantee that the endometrial-like tissue won’t return. Additionally, hormone treatment may still be needed afterwards.  
  • Pain medications: These tend to work well when pain is mild. Over-the-counter pain medications can be used for light pain, but a health care provider can provide a prescription for stronger medications.  

While there are many treatment options available, there still isn’t a cure. Medical experts still aren’t quite sure what causes endometriosis, but there are some theories. One possible theory presents retrograde menstruation as the culprit. This theory suggests that during menstruation, some part of the endometrium (the lining of the uterus that sloughs off during a period) flows back through the fallopian tubes and implants itself in the abdomen, where it begins to grow. Other theories suggest that either through a hormone imbalance or immune disorder, tissue in the abdomen transforms into endometrial-like tissue. Whatever the cause, some possible risk factors of endometriosis can include having a family history of the condition, starting periods early (before age 11), having short monthly cycles (less than 27 days), having a heavy period that lasts more than 7 days, and being infertile. In contrast, some potential factors that may lower the risk of endometriosis include pregnancy, breastfeeding, starting periods late in adolescence, and having a low amount of body fat. However, due to a lack of evidence, these risk factors and prevention are only speculated. 

Unfortunately, endometriosis is an overlooked and often misdiagnosed condition, with an underfunding for research into its causes, risk factors, and treatments. This may make dealing with it a difficult and sometimes isolating experience. However, there are organizations, such as the Endometriosis Association, that provide support to people with endometriosis and push for more research into the disease. If you want a place to go for more information, not to mention support groups and other help for your girlfriend, these may be helpful.  

Wishing you both all the best, 

Last updated Jul 16, 2021
Originally published Sep 13, 1996

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