Adenomyosis (pronounced add-en-o-my-OH-sis) is a gynecologic condition that causes endometrial tissue in the lining of the uterus to grow into the muscular wall of the uterus. It enlarges the uterus, and may lead to very heavy menstrual bleeding.

Mildred Chernofsky, M.D., a fellowship-trained gynecologic oncologist at Johns Hopkins’ Sibley Memorial Hospital, explains the symptoms and treatment for adenomyosis.

What is adenomyosis?

“The tissue that lines the uterus (endometrium) is a special type of glandular tissue that responds to hormones,” says Chernofsky. Each month, it prepares for a pregnancy by getting thicker. If pregnancy doesn’t happen, the endometrial tissue sloughs off during your menstrual period.

But in adenomyosis, some of this tissue grows into the myometrium, which is the muscular inner wall of the uterus. The tissue still behaves as it would if it lined the uterus, so it thickens and bleeds with a woman’s monthly hormone cycle.

What causes adenomyosis?

Experts aren’t exactly sure what causes adenomyosis, but risk factors may include:

• Age: Most women with adenomyosis are in their later childbearing years, between 35 and 50. The major symptoms of adenomyosis go away after menopause.
• Childbirth: Many women with adenomyosis have given birth to more than one child. Endometrial tissue could invade the myometrium when an embryo implants in the uterine wall. However, more research is needed to confirm this.
• Previous surgeries: Studies suggest that prior uterine surgeries, such as caesarean section or dilation and curettage (D&C), could make adenomyosis more likely. Research is ongoing about this risk factor.

Adenomyosis Symptoms

Adenomyosis symptoms may include:

• Enlarged uterus
• Feelings of abdominal bloating, fullness or heaviness
• Heavy bleeding during periods (menorrhagia)
• Pain during sex (dyspareunia)
• Pelvic pain
• Severe cramps during periods (dysmenorrhea)

Adenomyosis Diagnosis

There are several steps in diagnosing adenomyosis.

• Physical exam: A physical exam is the first step in diagnosing adenomyosis. “We review the patient’s symptoms and then palpate (feel) the uterus. It may feel spongy or globular if adenomyosis is present,” says Chernofsky.
• Ultrasound: The next step is an ultrasound to check for signs of adenomyosis. Ultrasounds are quick and easy tests that can usually be performed in the doctor’s office. While an ultrasound might not provide a very high-resolution image of the myometrium, it can help rule out other conditions, such as endometriosis or uterine fibroids.
• MRI: Chernofsky explains that an MRI is really the best imaging tool to confirm a diagnosis of adenomyosis. “MRI provides incredibly high-resolution images and shows us the thickness of the endometrial-myometrial junction, so we know if tissue is invading both of these layers.”

Adenomyosis vs. Endometriosis vs. Uterine Fibroids

Adenomyosis, endometriosis and uterine fibroids are all disorders of the female reproductive tract. They cause very similar symptoms, so it is easy to confuse them. However, they are different conditions that require different treatments.

• Adenomyosis occurs when diffuse (spread out) endometrial tissue grows into the wall of the uterus.
• Endometriosis occurs when endometrial tissue grows outside the uterus. It might grow on the fallopian tubes, ovaries, vagina or intestines.
• Uterine fibroids are caused by benign tumors (solid masses of cells that aren’t cancerous) that grow on different parts of the uterus.

Adenomyosis Complications

Women who bleed very heavily during their menstrual periods are at increased risk of anemia. Anemia develops when blood loss results in too few red blood cells in the body, so tissues don’t receive enough oxygen. Anemia can lead to:

• Fatigue
• Dizziness
• Fainting
• Lightheadedness
• Shortness of breath

“I may see patients that bleed until they have a hemoglobin level of 7 grams per deciliter and are extremely anemic,” says Chernofsky. “The normal hemoglobin levels for women are between 12 and 16 grams per deciliter. Some women go to the emergency room for heavy bleeding during menstrual periods and need a blood transfusion. When we get to that level of blood loss, surgery is usually the best treatment option.”

Adenomyosis and Pregnancy

Research about the effect of adenomyosis on pregnancy or fertility is ongoing. Early studies suggest that it could affect a woman’s ability to get pregnant, especially those undergoing in vitro fertilization.

Adenomyosis Treatment

Treatments for adenomyosis include hormonal contraceptives, medication and surgery. Some women with mild symptoms choose to manage adenomyosis nonsurgically until they enter menopause. Women with severe symptoms need a hysterectomy.

Hormone treatment

The first-line therapy for managing the symptoms of adenomyosis is usually hormonal contraceptives. These include birth control pills or progesterone-releasing intrauterine devices (IUDs). “Women need to be on birth control for three to six months or have an IUD for six months to one year to really see if contraceptives will help reduce heavy bleeding and cramps during periods,” says Chernofsky.

Tranexamic acid

Tranexamic acid is a nonhormonal medication that helps reduce heavy bleeding during periods. It is a pill you take while you menstruate. This treatment may help women who cannot or choose not to have hormonal treatments

Hysterectomy

The only way to fully stop adenomyosis is with a hysterectomy (surgery to remove the uterus). “Since adenomyosis causes diffuse, often fingerlike projections of tissue to invade the uterine wall, we can’t just go in and remove the abnormal tissue like we might be able to do with fibroids,” explains Chernofsky.

The hysterectomy may remove only the uterus or the uterus and the cervix, depending on the patient’s preference and the surgeon’s recommendation. The ovaries and fallopian tubes can stay in place.

Hysterectomies can be performed a few different ways:

• Abdominally: An open hysterectomy involves a large incision (cut) in your abdomen.
• Laparoscopically: A surgeon makes a few small cuts in your abdomen to remove the uterus. They view the procedure with a special telescope that contains a video camera (laparoscope).
• Vaginally: Sometimes surgeons can remove the uterus through the vagina, but this procedure is not an option if your vagina is narrow or if your uterus is very enlarged.

Endometrial ablation

Some women who do not want a hysterectomy choose to have endometrial ablation for adenomyosis. The procedure uses heat to destroy the lining of the uterus. Chernofsky cautions that while the treatment may help reduce heavy menstrual bleeding, it does not address the underlying problem. Ablation will not burn off tissue in the myometrium, so it is not typically a recommended treatment.

Living with Adenomyosis

The main symptoms of adenomyosis, such as heavy menstrual bleeding and cramping, go away once menopause starts. However, postmenopausal women may still have an enlarged or bulky uterus. Chernofsky emphasizes that it is important to talk to your primary care physician or OB/GYN if heavy menstrual bleeding is affecting your quality of life. There are treatments, and it is not a condition you have to live with.