For Kristina Adams, the nightmare began with debilitating pain and excessive bleeding that sent her to the emergency room during her college years. The agony was unforgettable—a crushing feeling that left her breathless, and the loss of blood was so severe that she found herself changing maxi pads every hour. Fast forward twenty years, and at 38, she faced another grueling cycle that felt like “having your intestines grabbed and squeezed.

Despite reaching out to her gynecologist for help, she was brushed off. A nurse's casual remark about having "just a bad period" only added to her frustration. As ongoing pain and abnormal bleeding continued to plague her life, an appointment led to a shocking revelation she had been unaware of: she had suffered a miscarriage.

The events that followed only added to her confusion and distress as her medical complaints were repeatedly dismissed. It took over three years into a new relationship for Adams to experience bleeding after sex and constant bleeding that made it challenging to fulfill her duty as a teacher for students with severe disabilities. “The pain was so bad, I couldn’t breathe,” she recalls, recalling days where even maximum doses of Advil and Tylenol were futile against her suffering.

In 2023, Adams was finally diagnosed with adenomyosis, a condition that has silently affected an estimated one in five women, contrary to earlier assumptions that only 1-5% were impacted. Often referred to as the "silent disease," adenomyosis can elude detection on ultrasounds, leading to years of misdiagnosis. The condition is characterized by the growth of endometrial tissue into the uterine wall, resulting in heavy menstrual bleeding, painful cramps, and other debilitating symptoms including infertility and chronic pelvic pain.

Dr. Natalya Danilyants, a board-certified gynecologic surgeon, emphasizes that many healthcare providers may not recognize the significance of adenomyosis. “Common conditions tend to overshadow conditions like adenomyosis,” she explains. “There’s a lack of awareness from both patients and doctors, leading to missed diagnoses and delayed care.”

For those suffering from adenomyosis, the road to recovery is complex. MRIs are more effective than ultrasounds in diagnosing the condition, but costs may be prohibitive. Many women, like Adams, find themselves navigating a health system where their symptoms may not be taken seriously until it is too late.

Adenomyosis can dramatically alter a woman’s quality of life, creating challenges not only in health but in career and personal relationships. Adams experienced serious financial implications, ultimately losing her teaching position because of her untreated symptoms. “Adenomyosis has invaded all aspects of my life—my career, my relationships, my lifestyle,” she shares with palpable sadness.

Other women have similar stories of struggle. Kristina Poffenroth faced the unbearable agony of severe menstrual symptoms for years until she took matters into her own hands, physically charting her symptoms to present to her doctor, ultimately leading to her diagnosis.

Many women, like Darlene Valencia, discover their condition only after invasive procedures have been performed. They often leave their healthcare professionals feeling unheard and invalidated, urging the need for greater awareness within the medical community about adenomyosis.

Adenomyosis shares some symptoms with endometriosis—a condition involving endometrial tissue growing outside the uterus—but the management and treatment options differ. While some medications can assist in pain management, the only definitive treatment is a hysterectomy, a surgical procedure to remove the uterus. Dr. Danilyants highlights that this procedure, although a significant decision, can be minimally invasive, offering a quicker recovery than many expect.

Despite the weight of making such a decision, hysterectomy is deemed the “gold standard” for treating adenomyosis. Adams reflects on the years of struggle and questions how her life may have changed with a different diagnosis. “Periods shouldn’t be that painful,” she insists, encouraging women to trust their instincts and seek out second opinions.

As more women share their stories of suffering, the urgency grows for greater understanding and recognition of adenomyosis. The consequences of untreated adenomyosis can lead women to prolonged pain and may affect every facet of their lives, from familial relationships to financial stability.

In raising awareness about this condition, the hope is that more women will receive the care they deserve, ensuring that their pain is acknowledged, treated, and no longer allowed to go unnoticed.