Adenomyosis plagues women’s lives but goes undiagnosed for decades

A painful, never-ending period sent Kristina Adams to the emergency room for the first time when she was in college. It was the kind of pain that takes your breath away. The bleeding was so severe that she went through a maxi pad every hour.

Two decades later, at age 38, she had another period that “felt like having your intestines grabbed and squeezed on the inside.”

She called her gynecologist, and recalls that a nurse told her it was “just a bad period.” As the pain and abnormal bleeding raged on, she called again and was told to come in for an appointment the following week.

“I feel like this is where everything went downhill,” Adams, now 46, says. At her appointment, she found out she was having a miscarriage. She didn’t know she was pregnant.

The miscarriage, she suspects, escalated the heavy and painful periods she had experienced since her first menstruation. When she expressed this to her doctor, it was dismissed.

But three years into a new relationship, she began bleeding after sex. Then, she bled all the time. She struggled to go to work, where she was a teacher for people with severe disabilities.

“The pain was so bad, I couldn’t breathe, I was crying,” she says. She was taking the maximum doses of Advil and Tylenol every day “and it didn’t even touch the pain,” she remembers.

When her doctor retired, she found a new doctor who ordered tests to assess her abnormal uterine bleeding.

Adams was finally diagnosed in 2023 with adenomyosis, a gynecological condition once thought to impact only 1-5% of women, but recent estimates suggest it likely affects at least 1 in 5 women. Due to underdiagnosis, the actual prevalence may be higher.

Adenomyosis is referred to as the “silent disease,” as many women experience mild or no symptoms, and it often goes undetected on ultrasounds. However, some women present with symptoms like Adams, but are misdiagnosed for years.

Dr. Natalya Danilyants, a board-certified gynecologic surgeon and the director of The Center for Innovative Gyn Care, says many OBGYNs and researchers are either unaware of the condition or fail to take it seriously. Adams had never heard of the condition before being diagnosed.

“Common conditions in men and women, like cancer, diabetes or hypertension, get a lot of attention, but things like adenomyosis do not,” says Danilyants, who specializes in complex gynecological conditions. “Patients don’t know about it. The OBGYNs maybe know about it, but don’t educate the patients. This leads to delay in care and underdiagnosis.”

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What is adenomyosis? Symptoms, causes explained

Adenomyosis occurs when tissue from the lining of the uterus, called endometrial tissue, grows into the uterine wall. It can cause the uterus to double or triple in size, painful menstrual cramps (dysmenorrhea) and heavy menstrual bleeding (menorrhagia).

Other symptoms include irregular periods, pelvic pain, painful intercourse, bloating (nicknamed “adenomyosis belly”) and infertility. The abnormal bleeding can increase a person’s risk of anemia and fatigue.

Adenomyosis has related symptoms but is distinct from endometriosis, in which endometrial tissue grows outside of the uterus.

MRIs are more likely than ultrasounds to pick up adenomyosis, but insurance doesn’t always approve them and it can cost patients thousands of dollars out-of-pocket. Danilyants says even when adenomyosis markers are found, doctors don’t always take it seriously.

“Sometimes patients come in with a copy of their ultrasound or MRI, and on that report, there are findings suspicious of adenomyosis, and the patient didn’t even realize because the OBGYN never highlighted it as a significant finding,” Danilyants explains. “So there’s already the diagnosis, but still no one’s stressed that that’s the cause of the issue.”

The cause of adenomyosis is unknown, but Danilyants says risk factors include being in your 40s and having a history of multiple C-sections. Childbirth, prior uterine surgeries, such as a uterine fibroid removal or a dilation and curettage (D&C), and a history of endometriosis are also risk factors, according to Cleveland Clinic.

Medication can help manage pain, but the only way to fully stop adenomyosis is a hysterectomy, a surgical procedure to remove the uterus. Most insurances cover a hysterectomy for adenomyosis if it is deemed medically necessary.

Surgery is a big decision, but Danilyants says a vaginal or laparoscopy hysterectomy done by a specialist is a minimally invasive procedure that takes only 45 minutes under general anesthesia. Within 7 days, Danilyants says her patients can return to work. Recovery can look different for everyone, but typically takes 2-4 weeks, shorter than the 6-8 weeks for abdominal hysterectomies, according to Brigham and Women’s Hospital and Cleveland Clinic.

She lost her job due to untreated adenomyosis

After Adams’ symptoms escalated, the school day she once looked forward to became increasingly challenging to get through.

Her doctor advised her to get a hysterectomy, and in 2024, she joked to her students that she was going away to get “old woman surgery.” But on the backend, she was pleading her case to human resources. She had run out of sick days. She couldn’t afford her bills and was living off credit cards. At the end of the school year, she left her job.

“Teaching gave me purpose, it was my identity,” she says. “Adenomyosis has gotten into all aspects of my life. My career, my relationships, my lifestyle.”

Women may self-advocate, but patient neglect can delay care

Adams is not alone.

Kristina Poffenroth, 35, had heavy periods starting in junior high, and was put on various forms of birth control for 20 years. After switching from oral contraception to an intrauterine device (IUD) in 2016, she experienced an escalation of symptoms in 2017.

“I started having really bad cramps all the time, even when I wasn’t bleeding,” she recalls. “I would just get this sharp stabbing pain on my right side that would leave me just completely incapacitated.”

Doctors kept telling her to give her body a few months to adjust to the switch. For a year, Poffenroth pushed off asking them about her symptoms, even though she was leaving work early or waking up in the middle of the night, crying in pain, multiple times a month.

After finally receiving an ultrasound in 2018, the doctors said “everything was normal,” and didn’t discuss her results in depth.

Poffenroth decided to make a color-coded calendar for her doctor that showed how many days she was bleeding when she shouldn’t have been and rated her pain on a pain scale daily. After taking it to his office, she pleaded, “This is not normal. Please fix this.”

Her IUD was removed that same day. She eventually switched to continuous birth control, which stops periods, but started bleeding through that. In October 2024, an ultrasound under a new doctor detected markers for adenomyosis. She had a thicker endometrial lining than the average person and was a candidate for a hysterectomy.

“When (my doctor) walked into the room with the results, the first thing she said was, ‘Good news. It’s not all in your head.’ I immediately started crying because I was so relieved,” Poffenroth says. “The worst part was when I wasn’t getting answers, because that’s when I felt the most invalidated.”

Her hysterectomy is set for June 12. She has a countdown on her phone.

“I still feel like I’ve had it easier than a lot of people,” she says. “But I also think that is related to how women minimize their pain and suffering a lot of the time.”

Darlene Valencia wasn’t diagnosed with adenomyosis until after her surgery, despite suffering from painful and heavy periods for 10 years.

“The doctor recommended a hysterectomy. He never said why,” the 45-year-old says. At least three months passed before the procedure, and she was bleeding the whole time. When the report came back that she had adenomyosis, the doctor said, “I knew that’s what it was going to be all along.” She asked what it was and he gave her the “textbook definition,” but left it at, “It’s gone now.”

“I felt really uncomfortable,” she says. “I feel fantastic now, (but) I kind of mourn my 30s, because I could have been feeling this way a long time ago.”

Jennifer Fleming, 52, is an active mother of two who enjoys sailing and hiking. At 30, her ultrasound showed markers for adenomyosis, but she didn’t want a hysterectomy — she was busy with her career, traveling and taking care of two young kids.

But in January 2023, she had a period that lasted for a month.

“The blood loss is crazy,” she says. “Tampons don’t even matter, because you’re gonna stick them in and you’re going to pull them out in 15 minutes. It’s scary when you’re looking at it.”

Her doctor dismissed her concerns. “He just chalked it up to being close to menopause,” she says. “There was no, ‘Hey, you don’t have to go through this.’”

She took a trip to the UC Davis Medical Center’s emergency room in Sacramento, California. A uterine biopsy confirmed that she did not have cancer, but adenomyosis. She’s tried progesterone pills and an IUD to manage her symptoms, but the IUD isn’t working.

“I feel like crying, because I’ve been trying to hold out from major surgeries,” she says. “This bleeding situation sucks because I’ve stopped sailing because of it. I was trying to go on this 40-mile backpacking trip. I can’t do any of that right now.”

‘Hysterectomy is the gold standard’

The issue with adenomyosis care, Danilyants says, is that the doctors often treating patients are OBGYNs who “like to treat everything medically” by prescribing birth control and pain medications.

“Birth control pills are not effective. It’s treated by surgery,” she explains. “Hysterectomy is the gold standard for treating adenomyosis.”

There is also an economic burden of untreated disease — chronic pain, infertility treatments and lost wages, Danilyants adds.

“This disease affects millions of women, and they’re going to the ER getting blood transfusions. They’re seeing a hematologist to get iron infusions,” she says. “So this is years and years of spending money to treat this condition that could have easily been treated with surgery. OBGYNs should be referring to specialists who can provide better treatment options.”

Adams can’t help but wonder what her life would have been like if she had a different doctor or known about adenomyosis sooner.

“Periods shouldn’t be that painful. This is real and you need to go to a doctor who will take you seriously,” she says. “I will never have a child now. I have my brother, but it’s been a journey. I want women to believe in themselves, trust themselves, and seek a second opinion.”

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