A woman who suffered intensely painful periods for 20 years has finally received a diagnosis that sheds light on a long-standing mystery that began before her teenage years. Jen Moore, 35, a former wedding cake baker from Cambridge, England, experienced debilitating menstrual pain starting at the age of 11, rendering her unable to stand upright.
Initially, doctors prescribed birth control pills in an attempt to alleviate her symptoms, but these measures failed to provide relief. Moore reported that medical professionals often dismissed her pain as “normal,” suggesting she was simply “unlucky” to experience painful periods.
During the COVID-19 lockdown, after discontinuing contraceptives she had been on for 22 years, Moore experienced a dramatic change. She described feeling like a stranger to herself and often fainting due to severe pain and blood loss. After undergoing an ultrasound that revealed no signs of endometriosis, Moore sought further answers and opted to pay for an MRI scan out of her own pocket.
The results were life-changing; she was diagnosed with endometriosis and adenomyosis, conditions characterized by the abnormal growth of uterine tissue. “At the time, I thought it was normal because I didn’t know any different,” Moore recalled, expressing her frustration at the lack of understanding surrounding her condition.
Reflecting on her childhood, Moore shared that her mother took her to various doctors, who assured them that her painful periods would eventually subside. Even if endometriosis were present, she was told, the only solution would be more birth control. Today, she feels a mix of rage and heartbreak about her past, particularly for the 11-year-old girl who was unaware of the challenges ahead.
Moore emphasized the importance of awareness and advocacy for future generations, stating, “I feel hope that generations are standing up and that they don’t want to tolerate this anymore.” However, she also believes that it shouldn’t solely be the responsibility of patients to advocate for themselves in the healthcare system.
Even now, she feels exhausted, noting that her condition has impacted every aspect of her life. Despite her struggles, Moore pursued her education and aimed to live as normal a life as possible, even while being bed-bound for about a week each month.
She has since learned that her endometriosis affects her bowels and bladder, describing it as “relentless.” After enduring the condition for 22 years, she acknowledges the significant damage done to her organs, stating, “Surgeries are never magic and don’t always provide a pain-free life.” Unfortunately, she still experiences substantial endometriosis-related pain.
Janet Lindsay, CEO of Wellbeing of Women, commented on the broader implications of Moore’s story, highlighting that endometriosis affects many women, often for years before a proper diagnosis. “For too long, women’s pain has been dismissed or misunderstood,” she said, calling for greater awareness, early diagnosis, and better support for those living with the condition.
Endometriosis is defined by the Mayo Clinic as a condition in which cells similar to the lining of the uterus grow outside the uterus, often affecting pelvic tissue and potentially enveloping the ovaries and fallopian tubes. The condition can lead to severe pain and impact fertility and menstruation.
In a related story, Bindi Irwin, daughter of the late Steve Irwin, shared her own experience with endometriosis, revealing that her pain was dismissed for a decade while she underwent numerous tests for various diseases.
As awareness of endometriosis continues to grow, stories like Moore’s and Irwin’s highlight the urgent need for improved understanding and treatment options for those affected by this debilitating condition.