According to Jordan Klebanoff, MD, a minimally invasive gynecologic surgeon at Main Line Health, endometriosis and adenomyosis—two common gynecological conditions—go hand in hand and share many of the same traits.
Endometriosis occurs when uterine-like tissue grows outside of the uterus, most commonly on the ovaries, fallopian tubes and intestines. Adenomyosis is essentially endometriosis of the uterine muscle, which is uterine-like tissue that grows deep into the uterine wall. The two conditions commonly occur together and cause intense pain in and around the pelvis.
"The reality is, they can be thought of as the same thing," Klebanoff says. "When that same disease process winds up in the muscle of the uterus, we call that adenomyosis."
Endometriosis and adenomyosis symptoms
Both endometriosis and adenomyosis cause painful periods, pain with intercourse and changes and pain in urinary and bowel habits. The pain that comes with both conditions is driven by inflammation in the pelvis. Both conditions can impact fertility, but adenomyosis is believed to cause more fertility issues since it directly impacts the uterus, where embryos develop.
The key difference, according to Klebanoff, is that adenomyosis almost always causes heavy or irregular periods. "True endometriosis does not impact the volume of a menstrual cycle," Klebanoff explains. When a patient says they have heavy, painful periods with large clots, he immediately suspects they may have adenomyosis in addition to endometriosis.
"That's the classic finding with adenomyosis: very heavy, painful menstrual cycles," Klebanoff adds. Another clue that a patient has adenomyosis is that they previously had a Cesarean section, as uterine procedures increase a person's risk for adenomyosis.
How endometriosis and adenomyosis are diagnosed and treated
Similarly to endometriosis, adenomyosis can only be confirmed through surgery. A biopsy for endometriosis can be conducted without damaging the fallopian tubes, ovaries and the uterus. With adenomyosis, there isn't a standardized way to remove part of the uterus without causing damage, which makes the condition trickier to diagnose. That said, adenomyosis is easier to identify through medical imaging studies, such as a pelvic MRI. This is because most people with endometriosis have superficial disease, while adenomyosis is often severe and deeply-infiltrating.
The only widely accepted surgical treatment for adenomyosis is a hysterectomy, or removal of the uterus. Adenomyosis typically involves all the uterine muscle, and it can be difficult to remove the adenomyosis while preserving a functioning uterus.
In certain cases, however, the adenomyosis may be localized to one specific part of the uterus, in which case the diseased tissue can be removed as long as there is enough healthy uterine muscle surrounding the diseased area, Klebanoff says. Medical suppression of the disease is available for certain patients with adenomyosis or endometriosis who want to eventually have children.
Endometriosis and adenomyosis often occur together
Commonly, endometriosis and adenomyosis occur simultaneously. Adenomyosis is often overlooked and misdiagnosed, according to Klebanoff, as many women who present with painful, heavy periods are diagnosed solely with endometriosis. Some of these women get surgery to remove the endometriosis, and when the pain persists, it becomes apparent they also have adenomyosis.
Ashley Karpin, a 30-year-old woman, is one such patient. Ever since she first got her period at age 11, Karpin had heavy, painful menstrual cycles. For years, despite the fact she suspected something was wrong, Karpin was told she was healthy and normal, and she was instructed to take hormonal birth control to suppress her menstrual symptoms.
It wasn't until her 20s that the pain intensified—it would throb in her uterus and shoot down her leg, often lasting much longer than the period itself. Eventually, Karpin went off birth control when she and her husband decided they wanted to start a family. That's when her world turned upside down.
"I was in pain all of the time—I was missing work, I was skipping dates—it got really, really bad," Karpin reflects. The pain sometimes became so debilitating that she would have to go to the emergency room.
Eventually, a vaginal ultrasound revealed that her ovaries were entangled, and Karpin was rushed into emergency surgery, at which point doctors discovered that she also had stage 4 endometriosis. Her left ovary and fallopian tubes would have to be removed. The pain briefly subsided, but four weeks later it was back, and it was worse.
Karpin was eventually referred to Dr. Klebanoff, who ordered imaging studies, including a pelvic MRI that helped him identify the adenomyosis. "The second I walked into Dr. Klebanoff's office, I was heard, I was seen, it was real," Karpin adds.
Because the pain was so severe and heavily impaired her ability to carry out daily tasks, Karpin's best option was to receive a hysterectomy. Within hours following the surgery, she felt no pain, and has felt no pain ever since. "I can say that now, happily, it has been the best time of my life. I'm doing things I never got to do before," she says.
Be your own advocate
If you continue to be in pain but aren't getting a diagnosis, find a specialist who is trained in endometriosis and adenomyosis. Keep going—seek a second opinion, maybe a third—until you feel like you are being treated the way you want to be treated.
Karpin's biggest piece of advice is to be your own advocate. "You know your body better than anyone," she says. "Don't take no for an answer—if I had just taken no, I would still be in pain now."