A women with endometriosis

You asked: What is endometriosis?

Understanding types of endometriosis pain can help you talk to your physician
March 6, 2019

Endometriosis is a hard-to-diagnose condition that plagues women, sometimes without them even knowing. It can cause pain in multiple areas of the pelvic region, and the root of the pain often is mistaken for other things. It can come with a variety of symptoms and differing levels of severity, so it is hard to describe and therefore, hard to diagnose. The important thing for women to remember is that unbearable, chronic pelvic pain is not normal.

The good news is that understanding how to speak about pain, can help get the care and treatment necessary for endometriosis.

What is endometriosis?

One of the biggest symptoms of endometriosis is pelvic pain. Women may experience pain that resembles menstrual cramps and pain with intercourse and/or bowel movements. Some women can experience infertility or an ovarian mass with endometriosis.

Nearly one in 10 women experience endometriosis at some point during their reproductive years. “Endometriosis occurs when the tissue that normally lines the inside of the uterus is found in locations outside of the uterus,” said Jennifer Friedman, MD, FACOG, clinical assistant professor at the Texas A&M College of Medicine and assistant dean for student affairs.

Normal period cramps versus or endometriosis pain

“The pain can coincide with your periods, and it is usually described as worse than normal,” Friedman said. “Sometimes the severity of pain before or during a period suggests endometriosis versus normal menstrual cramps.”

However, the severity of pain does not necessarily correlate with the severity of the endometriosis. The pain can vary depending on location and extent of tissue growth.

Pain in the lower back or abdomen suggests endometriosis, but other conditions like adenomyosis—a condition in which uterine tissue is found within the muscle of the uterus—or uterine fibroids may also cause increased pain during periods. If you are concerned or have questions, visit your health care provider to explore possible causes of severe or chronic period pain.

Diagnosing endometriosis

The first steps to getting treatment is to visit your health care provider. The pain can be difficult to describe. To circumvent this difficulty, women can use different online tools like surveys or scales to measure pain. Women can also come prepared with a list of questions.

During this initial visit, you may discuss family history and receive a physical exam, including a pelvic exam. The findings from this visit may lead to further testing or a discussion of a treatment plan.

Providers may suggest conducting a pelvic ultrasound or MRI imaging to learn more about the causes of your symptoms. Health care providers can make a presumptive diagnosis of endometriosis without surgery based on the combination of symptoms, signs and imaging findings. These findings may lead toan empiric treatment, where a therapy trial like oral contraceptive pills may lead to resolution of symptoms. However, the success or failure of empiric treatment does not confirm or negate a definitive diagnosis of endometriosis.

The only way to receive a definitive diagnosis of endometriosis is by surgery. A surgeon will take a biopsy of visual findings during a surgical procedure like a diagnostic laparoscopy. Often, surgeons will take a biopsy during other surgeries like cesarean sections or tubal ligations. 

Endometriosis treatment options

Treatment can include medication or surgery or both. The type of treatment is dependent upon a timely diagnosis and often the severity of it. Pain relievers like NSAIDs are a common first line treatment, especially for painful menstrual cramps.

If this does not help or alleviate symptoms, health care providers may recommend hormonal therapy. Hormonal treatment options include birth control pills and other daily hormone medications that suppress ovarian function. These medications decrease levels of estrogen, which prevents menstruation. Other options include progesterone-only containing devices, like an intrauterine device (IUD) or implant and the injection that stop or decrease the frequency of menstruation as well.

If surgery is needed, patients should discuss with a gynecologic surgeon to assess fertility and hormonal status is needed. This conversation may guide the decision about the type of surgery recommended.

Does endometriosis cause infertility or ovarian cancer?

“About one-third to one-half of women with endometriosis experience infertility,” noted Friedman. “It can affect fertility in different ways. One way is by damage to the fallopian tube, where the egg travels from the ovary to the uterus.” However, she notes this may not be the only way it causes problems with getting pregnant.

Many women who do become pregnant report symptoms improve or resolve during pregnancy. However, constant supervision and regular checkups are required during pregnancy as rare complications can occur.

Endometriosis is linked with a slightly increased risk of ovarian cancer; however, this risk is low. It is not believed to be a precancerous condition. Women should discuss any family medical history with any health care provider.

“Women with severe pain during their menstrual cycles should not be afraid to ask for help,” said Friedman. “If the pain is from endometriosis, then your health care provider can work with you to find a treatment plan that works for you.”

— Mary Leigh Meyer

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