When I underwent laparoscopic surgery last month, I was looking forward to one thing: a definitive endometriosis diagnosis. For almost a year, doctors had suspected endometriosis was behind my painful periods and heavy bleeding—and possibly complicating my attempts to have a second child through IVF. Removing the displaced tissue, I was told, could help significantly.
Instead, I woke up to a different answer. The surgical team hadn’t found any endometriosis. Still coming out of anesthesia, I was sure I’d heard the nurse incorrectly. If it wasn’t endometriosis, then what the heck was it?
Later, in the recovery room, the surgeon said he suspected I had adenomyosis due to my enlarged and bulky uterus. I felt like my four-year-old daughter learning a new word: adenomyo-what?
“Because both endometriosis and adenomyosis are clinical diagnoses, there’s not a blood test that I can give you that confirms it,” explains Monica Christmas, MD, director of the Center for Women’s Integrated Health at the University of Chicago Medicine. Imaging can raise suspicion, but the only definitive diagnosis comes from pathology, typically after a hysterectomy—definitely not an option for me at this point.
On the ride home, sore and groggy, I did what many of us do after receiving unexpected medical news: I opened my phone and started googling.
Within minutes, I’d learned two things about my newfound diagnosis: Symptoms can improve after menopause and the only definitive cure is a hysterectomy. Neither of these felt especially compatible with my age (I’m 38), or my plans (I wanted to have a second child). So now what?
What is adenomyosis?
“Adenomyosis is when the endometrial tissue that should be lining the uterus somehow gets implanted in the muscle wall,” says Dr. Christmas. “When this tissue gets trapped within the muscle wall, it can lead to heavier, longer, and more painful menstrual cycles.”
Due to limited research, differing definitions and diagnostic criteria, it’s hard to determine the prevalence of adenomyosis with studies estimating anywhere from 5% to 70% of people suffer from the condition.
Symptoms can include heavy or prolonged bleeding, severe cramping, painful sex, pelvic pressure, and, in some cases, bleeding between cycles—especially after sex or exercise. “Anything that jostles the uterus can irritate that muscle wall,” Dr. Christmas says.
Unlike endometriosis, wherein endometrial tissue grows outside the uterus, adenomyosis occurs within the uterine wall itself. While both conditions can negatively impact quality of life, endometriosis is often considered more severe because of the impact it can have on the entire body, whereas adenomyosis is typically limited to pelvic pain and heavy periods.
