You know that pain: the pain you’ve had for years, that never gets better, month after month. You figure it’s normal — the women in your family have always had bad cramps. But maybe it’s something more because beyond the pain, try as you might, you just can’t get pregnant.
March is National Endometriosis Month, and we want to raise awareness of this underdiagnosed condition that is responsible for around 70 percent of chronic pelvic pain and up to half of all cases of infertility.
What is Endometriosis?
Endometriosis is the presence of endometrial glands, which normally are located only in the lining of the uterus, outside of the uterus. This means endometriosis can be located on the outside of the uterus and its connective tissues, the ovaries, fallopian tubes, bladder, bowel and rarely distant locations (for example, lung or central nervous system).
This tissue behaves just like the lining of the uterus — it thickens and bleeds over the course of each menstrual cycle. But since there’s no way for it to leave the body, the trapped tissue can generate inflammation, scar tissue, adhesions or cysts.
The Things We Know for Sure
There’s a lot we don’t know about the causes of endometriosis. So what do we know?
- Endometriosis is common: It affects as many as 11 percent of women between the ages of 15 and 44.
- It can be very painful: While some women with endometriosis experience no pain, other women may have painful menstrual cramps, pain during sex, abdominal or low back pain and painful urination or bowel movements during menstruation.
- Endometriosis is one of the leading causes of infertility. Women with endometriosis may have difficulty getting pregnant. For some women, this can be due to scar tissue of the fallopian tubes and/or ovaries caused by endometriosis or prior surgeries for endometriosis. Endometriosis can cause significant chronic inflammation and reproductive hormone changes, which can affect the function of the fallopian tubes, prevent sperm from fertilizing an egg or prevent implantation of an embryo inside the uterus.
- It can cause other, seemingly unrelated problems, including headaches, fatigue and gastrointestinal problems — nausea, constipation, bloating or diarrhea.
- Some women who have endometriosis experience no obvious symptoms.
Risks for developing the disorder increase in women who have never given birth, have long-lasting periods, have short menstrual cycles or have a close family member with endometriosis.
The Cause: Many Theories, Few Certainties
We don’t know exactly what causes it, but there are several possible explanations being studied.
One theory is “retrograde menstruation” in which the blood and tissue that is shed during a period makes its way out into the abdomen through the fallopian tubes, implanting onto pelvic organs nearby.
Another possibility is that endometrial cells may get into blood vessels and lymph nodes and spread.
There is also some evidence that the cells lining the abdomen can change or transform into endometrial glands.
Some women may get endometriosis after surgery on the uterus, like a Cesarean section, if cells from the uterine lining settle on other tissues.
Because endometriosis runs in families, there may also be inherited genetic factors that predispose a woman to the disease.
Why Is It Hard to Diagnose?
Endometriosis is definitively diagnosed only by surgery with biopsies showing endometrial glands outside the uterus. Biopsies are necessary as it can be difficult to identify endometriosis by appearance alone — implants can be clear, white, red, blue-black, brown or yellow, or there may only be ovarian cysts filled with brown fluid.
However, many women are assumed to have endometriosis if they show typical signs and symptoms of the disease (e.g. pelvic pain [menstrual or non-menstrual], pain with intercourse, pain with defecation, bowel or bladder problems, infertility, chronic fatigue), and other causes have been ruled out, such as pelvic inflammatory disease (PID), fibroids, ovarian cysts and bladder infections, to name a few.
Most women begin medical treatment without surgery, and if symptoms improve with treatment, endometriosis is the most likely cause.
What’s Most Important?
For too many women, the diagnosis of endometriosis is often delayed because its symptoms can vary from person to person, and it is often mistaken for severe menstrual cramps. Some women suffer through pain for years before they receive an accurate diagnosis. Painful, long-lasting periods are not the norm — and any unusual symptoms should be shared with a doctor.
For women who long to become pregnant, there is hope. Surgery may minimally increase pregnancy rates, though it may not be necessary and is not routinely recommended to help women with endometriosis to become pregnant. More commonly, women are treated with medications (either oral or injectable) to stimulate the ovaries, or they undergo in vitro fertilization (IVF), which has the highest success rates compared to natural conception.
How WakeMed Can Help
Make an appointment with one of our highly experienced Obstetrics and Gynecology physicians. We can help you find relief from pain as well as discuss your fertility options. While there is no cure for endometriosis, there are many treatment options to address the problems it can cause. Endometriosis is a progressive disease; seeking treatment and advocating for yourself if you have concerns is an important part of staying healthy.