What is adenomyosis?

This disease is common among women — but most don't even know they have it. 😨

A common disease, often misdiagnosed

“Adenomyosis I think is a great condition to educate women because a lot of women do not — have never heard of it. They don't know it exists.”

It’s a fairly common disease — but it’s often misdiagnosed. Its symptoms are harsh cramps, irregular bleeding, painful sex, and unexplained infertility. This is adenomyosis.

Former patient experience

Anita Lindemann, a former patient with adenomyosis, shares, “I spent seven years of heavy, prolonged bleeding, which really affected my life. I didn't feel I had a great quality of life. I'm a very active person and I'm a nurse at a school nurse. So, exercising, walking just the day to day activities of doing my job proved to be very challenging with that heavy bleeding.”

Adenomyosis is a condition in which the tissue that normally lines the uterus grows into the muscular wall of the uterus. It is most common in women aged 40 to 50. “I had three normal pregnancies, all vaginal pregnancies. I used to have very seven-day periods. It was just very to the book. Never had painful periods, never cramped any of that. Then when I was about 45 years old, I started having very heavy and prolonged periods and I could never count on my period,” Anita elaborates more on her personal experience with adenomyosis.

The harsh symptoms

Some women don’t experience any symptoms at all. Dr. Danilyants explains, “Close to 50% of women with abnormal bleeding —possibly even higher — have adenomyosis. If it's not symptomatic, all we can do is maybe get serial MRIs to see the progression of the disease. And we'll always have to counsel the patients that even though they're not having any symptoms if the adenomyosis is pretty extensive, they will very likely have problems with getting pregnant and may require even using a surrogate or another woman's uterus to carry their biological child.”

It is difficult to diagnose because it can also be mistaken for constipation, bladder pain syndrome, menopause, thyroid disorders, and endometriosis. “It can mimic other conditions. For example, it can present abnormal bleeding or heavy bleeding, which can be caused by a number of other conditions, such as uterine fibroids. It can be due to hormonal irregularity. So, it's commonly misdiagnosed or undiagnosed because it's blamed on other conditions. It can present this infertility. And again, sometimes gets misdiagnosed because of other conditions that are present and the thought to be the cause of whatever the issue may be,” Dr. Danilyants tells Brut.

Treatment options

Treatments depend on the age of the patients. For example, “In younger patients, it's much more difficult to treat adenomyosis. We know that the only effective treatment of this disease is removal of the uterus… In the younger patient who desires fertility, you know, it's very difficult to discuss this because they want to have children and obviously removing the uterus is not helpful. And it brings a lot of distress and depression as well. So, we have to try to manage the symptoms with the birth control pills or with some sort of hormonal management that may minimize or decrease some of the bleeding,” Dr. Danilyants discloses.