Endometriosis explained: Q&A with a doctor
Endometriosis is a painful, chronic disease that affects at least 6.3 million women and girls in the United States, according to the Endometriosis Association. Yet many women aren't familiar with its symptoms.
Because March is Endometriosis Awareness Month, it's a good time to shine a spotlight on this complex condition. To learn more, we caught up with Dr. Catherine Hunter, OB-GYN at MultiCare.
What is endometriosis?
Dr. Hunter: Endometriosis is a complex disease with multiple contributing factors. It occurs when endometrial cells which form the lining of the uterus grow in places other than the uterine lining itself, resulting in cysts, lesions or adhesions that are often painful.
Endometriosis is most commonly found in the pelvis — for example, in the wall of the uterus, the peritoneal surface (the lining covering the walls and organs of the pelvis and abdomen), along the ureter at the base of the cervix or in the ovaries and fallopian tubes. It can wind up in incision scars after C-sections, on the bladder or in the bowels. But it's also been found in the lungs.
What causes the disease?
Dr. Hunter: There has been a lot of discussion about how endometriosis gets started, and studies don't show just one cause. It might be the result of retrograde menstruation (in which menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity), embryologic (developing in the womb), or caused by an autoimmune process.
What are the symptoms of endometriosis?
Dr. Hunter: Endometriosis can cause pain and irregular bleeding. Sometimes it results in general pelvic pain, or more specific pain depending on where the lesions are located. Women can experience pain with intercourse, during bowel movements or during urination.
There are four clinical stages of endometriosis, but they don't always translate to symptoms. Someone can have stage 1 and have horrible symptoms, or stage 4 and none.
How is it diagnosed?
Dr. Hunter: We can often diagnose endometriosis by patient history, but for a definitive diagnosis we need to use a laparoscope to take a look. However, if we don't see anything it doesn't mean the patient doesn't have the disease, because it can be microscopic.
How is the disease treated?
Dr. Hunter: Usually we use a combination of surgery and medication. Some surgeons will cauterize lesions with a laser, but you only get the surface of the lesion when you do that, not the whole thing. The better treatment is to excise the entire mass using a technique called peritoneal stripping.
I had a patient who had a large nodule on a uterosacral ligament at the base of the cervix. After I removed the mass, she woke up in the recovery room saying that her pain was gone. The relief can be dramatic in some cases.
With most women, it takes about three months for the inflammation and pain to calm down or to decrease. At the post-op visit, we discuss the option of using medications to suppress estrogen, because estrogen seems to make the condition worse by stimulating the cells in the lining of the uterus. Anything estrogen does to the lining cells it also does to any endometrial cells throughout the body.
Also, patients often do better when they don't have menstrual cycles. Having periods every month tends to make symptoms worse. So we prescribe medications such as Lupron (leuprolide) or birth control pills to suppress the activity of the endometriosis.
In some cases, hysterectomy can help, especially if the endometriosis is in the wall of the uterus. But this is for women who have completed childbearing. Although endometrial tissue can still grow after a complete hysterectomy, symptoms seem to lessen.
Some patients who have hysterectomies still experience pain afterwards due to what we call neurogenic windup, which operates a bit like phantom limb syndrome. Nerve pathways have learned to fire in a certain way over time, so patients need to reset them with physical therapy or acupuncture.
The removal of ovaries may be an option in cases where pain is extreme or the disease is severe, but is not always necessary.
Can women who have endometriosis still have healthy pregnancies?
Dr. Hunter: Absolutely. In fact, women tend to do better when they are pregnant because estrogen is decreased. The only time endometriosis interferes with pregnancy is if it affects the fallopian tubes and causes too much scarring.
Is there a cure for endometriosis?
Dr. Hunter: There really isn't a complete cure, because the lesions can recur. But for the most part, treatments tend to help lessen pain and symptoms of the disease.