Endometriosis is one of those medical terms that many people have heard of but can’t exactly define—even though some six million women in the US are living with it today.
But many people know it can cause pain. Figuring out the difference between that and menstrual pain can sometimes be challenging, according to Divya Kelath Shah, MD, MME, a Penn Medicine physician and assistant professor of clinical obstetrics and gynecology.
Here’s what Dr. Shah says women should know about endometriosis pain.
Q: What is endometriosis?
Dr. Shah: Endometriosis is growth of the endometrium—the tissue that lines the uterus—in places it ought not grow. These can include the abdominal cavity, inside the ovaries, or sometimes on the bladder or the bowels.
Q: Is endometriosis something a woman is born with, or can her risk of developing it increase over time?
Dr. Shah: Endometriosis is not something that we typically see in women before they hit puberty, so we don’t think that it is something that you’re born with. It tends to be seen primarily in reproductive-age women who are between puberty and menopause.
But in terms of increasing or decreasing the risk, that’s harder to answer—though a lot of people ask about it. We don’t yet know whether there’s anything you can do to raise or lower your risk of developing endometriosis.
Q: Does endometriosis run in families?
Dr. Shah: There does seem to be a genetic predisposition where women who have close relatives with endometriosis might have a slightly higher risk of developing the condition.
But unlike some diseases, we don’t have a single gene that we can test for to tell whether a woman is at a higher or lower risk of developing endometriosis.
Q: What should women know about endometriosis pain and other symptoms?
Dr. Shah: The classic symptom of endometriosis is painful periods. Endometriosis pain can be during or before periods, or sometimes even a little bit after. That cyclic pelvic/abdominal pain is probably the most characteristic symptom.
Of course, many women without endometriosis can also have discomfort with their periods that is very normal. It can be difficult to tease out what is a normal level of discomfort versus what is concerning for endometriosis. That’s why a gynecologist is a good first contact. He or she can take a medical history and run tests to try and help determine the source of the pain.
Other symptoms that can sometimes be associated with endometriosis include discomfort with intercourse, or less commonly, pain with bowel movements. But not all intercourse or abdominal pain is endometriosis-related, and it is always important to exclude other causes of these symptoms.
One thing to keep in mind is that with endometriosis, the amount of discomfort doesn’t always correlate with the extent of visible disease. For example, some women have very profound endometriosis pain but almost no disease on the inside. On the other hand, other women with very profound disease on the inside are walking around without any symptoms whatsoever.
Q: What are some of the treatment options for women who have endometriosis?
Dr. Shah: When talking about treatment of endometriosis pain, one of the biggest questions is whether the woman is actively trying to get pregnant at the time that she’s interested in treatment.
If a woman is not actively trying to get pregnant, the treatment typically centers around two primary means. The first type of treatment is regular use of non-steroidal anti-inflammatory medications (NSAIDS)—like ibuprofen or Aleve—during times when she has discomfort.
This is usually combined with the second type of treatment, which is hormonal—usually either estrogen and progesterone together, or progesterone alone as a first-line approach. These hormones are used to suppress the growth of the endometrium both inside and outside the uterus.
The issue with hormonal treatments is that they aren’t compatible with pregnancy. So, if a woman is trying to get pregnant, she can’t be hormonally treated for endometriosis. That being said, the nice thing is that pregnancy itself actually suppresses endometriosis.
When a woman with endometriosis gets pregnant, she typically feels a lot better during the course of her pregnancy. The same goes for breastfeeding. Some women with endometriosis choose to prolong breastfeeding for quite some time because it can to lead to symptom relief.
Occasionally, surgery is warranted for endometriosis, but surgical treatment of endometriosis has many limitations and isn’t always appropriate.
Thank you, Dr. Shah!
If you're experiencing painful periods, a good first step is to discuss the issue with your gynecologist. He or she can help treat the discomfort, and diagnose any related conditions that may be causing it, such as endometriosis.