March 16, 2020

Adenomyosis: The Common Gynecological Condition You’ve Never Heard Of

By Lucy Erickson, PhD, SWHR Director of Science Programs

Heavy menstrual bleeding, painful cramps, and bloating during menstruation may sound like “normal” mild symptoms accompanying a woman’s period, but for some women, these symptoms are much more severe and may be signs of an undiagnosed, noncancerous gynecological condition.

Women with conditions like endometriosis, uterine fibroids, and adenomyosis often face delays in diagnosis because of the difficulty in distinguishing when symptoms cross the line from typical to severe. SWHR’s Endometriosis and Fibroids Network is working to engage and educate patients, clinicians, and health care decision-makers about these diseases and their significant impact on women’s lives.

Adenomyosis is a poorly understood disorder associated with heavy menstrual bleeding and menstrual cramps that sometimes cannot be controlled with non-steroidal anti-inflammatory drugs such as Advil. While endometriosis occurs when tissue similar to that which lines the uterus (the endometrium) grows outside of the uterus, in adenomyosis this tissue grows into the muscle wall of the uterus, enlarging it.

The reported prevalence of adenomyosis varies widely, from 5% to 70% of women, likely because of differing definitions and diagnostic criteria used in various research studies. The gold standard for diagnosing adenomyosis involves dissecting the uterus and examining the tissue under a microscope, which is only possible following a hysterectomy. Because hysterectomies are usually performed on women later in their reproductive years, the disease has typically been diagnosed in women in their 40s and 50s.

However, newer, noninvasive imaging techniques are making it possible to detect signs of adenomyosis without hysterectomy, resulting in the disease being more frequently identified in women as young as adolescents.

“These techniques are only accurate in the hands of a trained specialist,” says Linda Griffith, MIT School of Engineering Professor of Teaching Innovation, Biological Engineering and Mechanical Engineering and a leading expert on endometriosis and adenomyosis. “For example, although some radiologists know to check for uterine fibroids, many are not trained to look for signs of adenomyosis.”

In addition, the false assumption that adenomyosis is a disease that only occurs after pregnancy can be a barrier to diagnosis because heath care providers interpreting such tests may be unaware that adenomyosis can affect younger women or women who have not been pregnant before.

Further complicating diagnosis, adenomyosis may co-occur with other gynecological conditions and often causes the same symptoms as these conditions. For example, patients whose pelvic pain persists after surgery for endometriosis or whose abnormal bleeding persists after myomectomy (a surgical procedure to remove a fibroid) may have adenomyosis.

Regardless of whether a woman’s life-impacting painful periods or bleeding symptoms are caused by adenomyosis, endometriosis, fibroids, or a combination of these conditions, she should be able to receive timely diagnosis and effective treatment.

Medical and surgical treatments are available for adenomyosis, such as over-the-counter pain medications, hormonal therapies, and minimally invasive procedures (e.g., ablating or excising parts of the diseased tissue). Hysterectomy is considered a cure for adenomyosis and abnormal bleeding, and can be considered for women for whom future fertility is not a concern. However, hysterectomy should be reserved for severe cases that do not respond to less invasive treatments. When considering hysterectomy, it is important to remember that although it is a cure for abnormal uterine bleeding, it is not always a cure for pelvic pain and that pain can persist for some women despite hysterectomy.

Women with adenomyosis need more and better treatment options to manage their disease. To accomplish this, we need to invest in research — both basic and clinical — to better understand adenomyosis, as well as the other gynecological conditions that frequently accompany it. In 2019, NIH funding for endometriosis and uterine fibroids research was only $13 and $17 million, respectively. These funding levels are much lower than those for other chronic conditions, such as diabetes, which was allocated more than $1 billion in funding.

The situation with research funding for adenomyosis is even more bleak than for endometriosis and fibroids — adenomyosis does not even appear on NIH’s list of conditions  on the NIH website that breaks down funding by specific condition. According to Lisa Halvorson, MD, chief of the Gynecological Health and Disease Branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, “Funding on adenomyosis has been meager for many years, in part because of the lack of grants submitted to NIH focused on the disease.”

However, she added, “the paucity of adenomyosis research funded by NIH is something that we are actively trying to change.“ Research in the field has been increasing incrementally as adenomyosis gains traction in the research and clinical worlds, Halvorson said, which will hopefully result in more grant applications to study the disease.