Nearly 2,000 women in Cumbria have been diagnosed with endometriosis, according to new data, as research reveals the profound delays many women face in receiving a proper diagnosis and treatment for the condition.
The figures were released following a report from the Women and Equalities Committee, a UK parliamentary select committee, which highlighted that some women are forced to wait years for a diagnosis. Statistics from the Office for National Statistics (ONS) show that between March 2011 and December 2021, 262,065 women in England were diagnosed with endometriosis through the NHS. In Cumbria alone, 1,860 women were diagnosed during the same period, equating to 784 diagnoses per 100,000 women.
Endometriosis is a chronic gynecological condition that has wide-ranging effects on physical, mental, social, and economic well-being. Common symptoms include severe abdominal and pelvic pain, extreme fatigue, anxiety, and infertility, making it a significant health issue for many women. The ONS estimates that around 2% of women of reproductive age in England suffer from endometriosis, though this figure is likely an underestimate, as many cases go undiagnosed. Charities like Endometriosis UK suggest that up to 10% of women may be affected.
Emma Cox, CEO of Endometriosis UK, welcomed the increased focus on research into the condition but stressed that more needs to be done. She noted that historically, the lack of research and data on endometriosis has led to its underestimation and under-recognition in healthcare. Cox emphasized the importance of stronger evidence to convince healthcare decision-makers to invest in early diagnosis, better access to treatment, and additional support for those affected.
“The relative lack of both data and research into endometriosis has made it easy to overlook or fail to grasp the seriousness of the disease,” Cox said. “The findings from recent research will paint a picture of the condition that will be impossible to ignore.”
According to the latest figures, the Northwest of England has a diagnosis rate of 1,159 cases per 100,000 women between March 2011 and December 2021. The average age for diagnosis is 35, but the condition is often undiagnosed for many years. Research also reveals a disparity in diagnosis rates, with women in wealthier areas having lower rates compared to those in poorer areas. This may be linked to access to private healthcare, which often provides speedier diagnosis and treatment.
Additionally, women who report being in poor health or disabled are more likely to be diagnosed with endometriosis than women in better health, the ONS said.
The NHS has acknowledged the challenges women face in accessing timely care. A spokesperson for NHS England stated: “The NHS is committed to helping women affected by endometriosis. While there have been some improvements, we know there is still much more to do. We have made information on menstrual pain more widely available to help women recognize when they may need further medical attention, and we are also working with local areas to develop women’s health hubs to improve early diagnosis and management of the condition.”
The journey to a diagnosis remains difficult for many women, as endometriosis symptoms often overlap with those of other conditions such as irritable bowel syndrome (IBS) and pelvic inflammatory disease (PID). On average, it takes about eight years from the onset of symptoms for a woman to receive a definitive diagnosis. Diagnosis involves a combination of consulting a GP, imaging tests, and, in many cases, a laparoscopy.
Though there is no cure for endometriosis, several treatments can help manage symptoms and improve quality of life. These include pain management, hormone therapies, surgical interventions, and fertility treatments. The NHS continues to push for earlier diagnosis and more efficient treatment pathways to alleviate the significant impact of the condition on women’s lives.
As awareness of the condition grows and research continues to evolve, there is hope that the healthcare system will be better equipped to support women struggling with endometriosis, reducing the diagnostic delays and improving outcomes for those affected.
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