That’s the response I receive most often when I try to explain a condition known as adenomyosis. While adenomyosis is sometimes referred to as endometriosis interna, endometriosis and adenomyosis really are two separate diseases and rarely occur together.
The only similarity the diseases share is the presence of endometrial glands in the wrong anatomic area. When endometrial glands form on the outside of the uterus, this is endometriosis. When these glands bury themselves deep into the uterine muscle then you have adenomyosis.
Somewhat like the edging used in your yard to keep grass out of the flower beds, there is a layer beneath the endometrial glands called the basalis layer that helps keep the glands from penetrating into the deeper muscle portion of the uterus.
But over time, for unknown reasons, their glands begin to penetrate this layer. By the time women reach 40 to 50 years old, up to 60 percent of women may have adenomyosis.
As this condition worsens, the uterus becomes enlarged, usually two to three times normal size. For the most part, women with adenomyosis experience only minor symptoms since it is a gradual process. But for women who have had several children, the symptoms seem to be more significant.
The classic symptoms are increasingly painful cramps with periods growing heavier and the flow longer. As the disease of adenomyosis progresses, the symptoms become more and more severe. Women will complain if a constant low pelvic ache that builds as they near their period.
Activities that may cause pressure on the uterus worsen the pain. They may feel more “fat” or “bloated” in the lower abdominal area as the uterus increases in size. When a woman has a pelvic exam the uterus may be very tender to light palpation if they are close to their periods.
That’s a little harder to figure out than you might think because the diagnosis is based on a histologic or tissue exam of the uterus. You cannot do a laparoscopy as in diagnosing endometriosis because the outside of the uterus and the inside appears normal.
The disease lies within the wall of the uterus. One cannot do a tissue exam on a uterus unless the uterus has been removed and examined under a microscope. MRI scans and ultrasounds are sometimes helpful in diagnosing the more severe cases of adenomyosis since this type of X-ray can see within the wall of the uterus to some degree. But the expense and lack of sensitivity leaves this method still in the research phase.
One other method is a trial of hormonal therapy that will turn off a hormonal stimulation to the uterus and glands. The glands begin to shrivel up, causing the swelling, pain, and bleeding to subside. The drawback to this therapy, however, is that it’s temporary and cannot be used for long periods of time.
Once diagnosed, treatment doesn’t come easy, either. Treatment is limited to surgery since the deep penetrating endometrial glands rarely respond to the most conventional hormones or medical therapy.
Generally, the diagnosis is made after several factors have been ruled out. Unfortunately, the definite treatment for the women suffering from adenomyosis today is a hysterectomy.