Kristina Adams first sought medical attention during her college years due to excruciating pain and severe bleeding during her period. Over the years, the pain persisted, reaching its peak at age 38 when she experienced a period that felt like her intestines were being squeezed. Despite seeking help from her gynecologist, she was initially dismissed and labeled as having a “bad period.” This dismissal marked the beginning of a downward spiral for Adams.
Following a traumatic miscarriage that she was unaware of, Adams’ symptoms worsened, with persistent heavy bleeding and debilitating pain affecting her daily life as a teacher working with individuals with severe disabilities. Despite taking high doses of pain relievers, the medication provided no relief.
After undergoing various tests ordered by a new doctor, Adams was finally diagnosed with adenomyosis in 2023. This gynecological condition, once believed to affect only a small percentage of women, is now estimated to impact at least one in five women but remains underdiagnosed due to its subtle nature and lack of awareness.
Referred to as the “silent disease,” adenomyosis can manifest with a range of symptoms, including pelvic pain, irregular periods, painful intercourse, and bloating, often leading to misdiagnosis or delayed diagnosis. Dr. Natalya Danilyants, an expert in gynecological conditions, emphasizes the lack of attention and education surrounding adenomyosis compared to more widely recognized health issues like cancer or diabetes.
For Adams, receiving a diagnosis was life-changing, as it provided clarity and an explanation for her years of suffering. Adenomyosis occurs when endometrial tissue grows into the uterine wall, resulting in symptoms such as severe menstrual cramps, heavy bleeding, and infertility. Differentiating it from endometriosis, adenomyosis can be challenging to detect through standard ultrasounds, often requiring more advanced imaging techniques like MRIs.
As awareness and understanding of adenomyosis continue to evolve, providing timely and accurate diagnoses remains crucial in improving the lives of individuals like Kristina Adams who have endured the burden of this mysterious illness for far too long.
When adenomyosis markers are identified, doctors may not always treat it with the seriousness it deserves. Dr. Danilyants explains that sometimes patients bring in reports of their ultrasound or MRI showing suspicious findings of adenomyosis, which were not previously highlighted by their OBGYN as significant. This lack of emphasis on the diagnosis can lead to the underlying issue not being properly addressed. The cause of adenomyosis remains unknown, but risk factors include being in your 40s, a history of multiple C-sections, childbirth, previous uterine surgeries, such as fibroid removal or D&C, and a history of endometriosis, according to the Cleveland Clinic. Pain management medications can help alleviate symptoms, but a hysterectomy, the surgical removal of the uterus, is the only definitive way to stop adenomyosis. Most insurance plans cover hysterectomies for adenomyosis if deemed medically necessary. While surgery is a significant decision, a vaginal or laparoscopy hysterectomy performed by a specialist is a minimally invasive procedure lasting around 45 minutes under general anesthesia. Patients can typically return to work within 7 days, with recovery taking about 2-4 weeks, shorter than the 6-8 weeks required for abdominal hysterectomies, as reported by Brigham and Women’s Hospital and the Cleveland Clinic.
Kristina Adams and Kristina Poffenroth are examples of individuals who faced challenges with diagnosing and treating their adenomyosis. Adams had to leave her job due to untreated adenomyosis symptoms, while Poffenroth experienced delayed care despite her suffering. Poffenroth’s persistence in advocating for herself eventually led to a proper diagnosis and treatment plan. These stories highlight the importance of patient advocacy and the potential consequences of neglecting symptoms of adenomyosis.
On the same day, her IUD was removed, and she later switched to continuous birth control to stop periods but continued to experience bleeding. In October 2024, a new doctor discovered signs of adenomyosis during an ultrasound, noting a thicker endometrial lining. The doctor recommended a hysterectomy for her condition, providing much-needed validation and relief. Scheduled for June 12, she eagerly anticipates the procedure with a countdown on her phone.
Despite enduring 10 years of painful periods, Darlene Valencia was not diagnosed with adenomyosis until after her surgery. Her doctor suggested a hysterectomy without much explanation, leaving her feeling uneasy. Upon receiving the diagnosis, the doctor nonchalantly confirmed his suspicions, providing minimal information and closure. While she now feels great, she mourns the years of discomfort and wishes she had sought treatment sooner.
Jennifer Fleming, a vibrant mother of two, initially chose to manage her adenomyosis with medication due to her busy lifestyle. However, a prolonged month-long period in January 2023 prompted a visit to the emergency room, where she received a proper diagnosis. Despite trying various treatments, including progesterone pills and an IUD, she continues to struggle with debilitating symptoms, forcing her to give up activities she once enjoyed.
According to experts, adenomyosis is often inadequately treated by OBGYNs who prefer medical interventions over surgery. However, surgical options like a hysterectomy are considered the most effective treatment. Untreated adenomyosis can lead to chronic pain and infertility, underscoring the importance of proper medical care for this condition.
Adenomyosis is a debilitating condition that impacts millions of women, leading to costly fertility treatments, lost wages, and significant medical expenses. Doctor Danilyants highlights the importance of recognizing the severity of this disease, emphasizing the need for proper diagnosis and treatment to prevent unnecessary suffering. She stresses the value of referring patients to specialists who can offer more effective treatment options.
For patient Adams, the delayed diagnosis of adenomyosis has had a profound impact on her life. She reflects on the pain and struggles she has endured, expressing regret over the missed opportunities for earlier intervention. Adams encourages women to advocate for themselves, seek out attentive medical care, and consider seeking a second opinion to ensure their health needs are met.
This insightful article sheds light on the hidden burden of adenomyosis in women’s lives, urging for greater awareness and proactive medical intervention to address this often overlooked condition.
