What is adenomyosis?

Adenomyosis an underreported cause of pelvic pain

When many women experience intense menstrual or pelvic pain, fibroids and endometriosis may initially come to mind.

Adenomyosis isn't as well-known as these other gynecologic conditions, but it similarly causes pelvic pain and is believed to impact around 35 percent of women — a number that is most likely underreported.

Doctors say adenomyosis is essentially endometriosis that's contained within the uterus. It occurs when the endometrial tissue that normally lines the uterine cavity grows inside the wall of the uterus or within the uterine muscle.

What are the symptoms of adenomyosis?

The hallmark symptoms of adenomyosis include heavy and painful periods, according to Jordan Klebanoff, MD, a fellowship-trained, minimally invasive gynecologic surgeon at Main Line Health specializing in endometriosis and adenomyosis care.

Many of the adenomyosis symptoms overlap with the symptoms of endometriosis. Some people with adenomyosis experience dyspareunia, or pain during intercourse, along with changes in urination and bowel movements.

"When I am talking to a patient about their endometriosis and as part of their symptoms they say, ‘Yes, I have pain with intercourse. Yes, my cycles are very painful, but I also have heavy periods, often passing clots,' that always clues me in that there may be adenomyosis," says Klebanoff.

In a minority of cases, adenomyosis may cause no symptoms at all — estimates suggest that around 33 percent of people living with adenomyosis are asymptomatic. People can have very diffuse adenomyosis with no symptoms, or very minimal adenomyosis that causes severe pain. "The extent of the disease does not correlate well with the extent of the pain," Klebanoff adds.

Unfortunately, some patients may only discover the condition when they experience fertility issues. The pain that people with adenomyosis experience is caused by inflammation that is triggered by hormonal changes. That inflammation can also impact the uterus's ability to sustain a pregnancy.

What causes adenomyosis?

It's unclear what exactly causes adenomyosis, according to Klebanoff. Many researchers believe that adenomyosis forms during fetal development, but that needs to be confirmed through more research.

Adenomyosis is most common in pre-menopausal women in their 30s and 40s. Many cases of adenomyosis occur after women receive a uterine surgery, such as a cesarean section or myomectomy. According to Klebanoff, if a patient has heavy, painful periods and has previously had multiple uterine procedures, there is good reason to suspect they may have adenomyosis.

Research suggests increased estrogen exposure is a risk factor as well. It's known that endometriosis can be hereditary, often impacting multiple members of one family, and while there is less research on adenomyosis, the condition is also thought to be a hereditary risk, says Klebanoff.

How is adenomyosis diagnosed and treated?

An adenomyosis diagnosis is typically confirmed through a surgical procedure. In severe cases, an adenomyosis diagnosis can be made with reasonable accuracy through a pelvic MRI or ultrasound. It's important to keep in mind, however, that some patients with adenomyosis may have normal imaging test results.

There are adenomyosis treatments available for women who wish to preserve their fertility. Many women who hope to become pregnant choose to take medications that can suppress the disease, says Klebanoff. If the disease is limited to one spot within the uterus, which is uncommon, some patients can undergo a surgery to remove the localized adenomyosis, but this should only be done by an experienced and trained surgeon.

Women who aren't interested in becoming pregnant can pursue a hysterectomy, or surgical removal of the uterus.

Getting the adenomyosis treatment you need

Adenomyosis is often overlooked when women seek treatment for pelvic pain. Additionally, endometriosis and adenomyosis often occur simultaneously, and many women who have both conditions are only diagnosed with endometriosis since adenomyosis isn't as well-known or understood. In some cases, a patient may be properly treated for endometriosis but the pain may persist due to underlying undiagnosed adenomyosis.

Because of this, Klebanoff says it's important for people to listen to their body and to continue to seek help if they experience pain or heavy periods. If you suspect there is something wrong in your body, but you haven't received a diagnosis or treatment plan that helps alleviate the symptoms you are experiencing, don't give up.

"Get a second opinion, get a third opinion — keep going until you are treated the way you want to be treated by someone experienced and knowledgeable about your condition," Klebanoff says.

Next steps:

Make an appointment with Jordan Klebanoff, MD
Learn more about the Advanced Gynecology Program at Main Line Health
How to deal with endometriosis pain (nonsurgically and surgically)