U.K. women are waiting an average of 8 years 10 months to be diagnosed with a common reproductive condition, a report has revealed.
Women with undiagnosed endometriosis are bein told they’re making a “fuss about nothing” as they search for an explanation for their often severe and chronic pain.
Their condition is common, affecting some 10% of women of reproductive age. But it is poorly recognized and often dismissed, as research from Endometriosis U.K. shows.
What is endometriosis?
If a person has entometriosis, this means tissue similar to that found lining the uterus has grown in other areas of their body — often on other parts of the reproductive system, like the overies or the fallopian tubes.
This tissue can also grow in other places, like the bladder or bowels. In very rare cases, it can grow on the lungs or other parts of the body, according to U.S government health site, Medline.
No-one knows exactly what causes endometriosis, but it can affect anyone who gets periods.
Although it can cause a range of symptoms, the most typical are pelvic pain — often during periods — and infertility. It can also cause a range of menstrual and gut symptoms, fatigue and pain during or after sex.
Endometriosis can’t yet be cured, but several treatments can relieve symptoms.
These may include painkillers, hormonal contraceptives or medicines known as medicines called gonadotrophin-releasing hormone (GnRH) analogues.
In some cases surgery, might be used to remove patches of endometriosis.
Why does it take so long to get a diagnosis?
Diagnosing endometriosis can be challenging. This is partly because it can cause such a wide range of symptoms, many of which can also be caused by other conditions.
Surgery is needed to definitively diagnose endometriosis, and this is usually performed after a physical examination and medical imaging.
Surgeons insert a thin tube with a camera into a woman’s belly to try and spot any patches of endometriosis. Sometimes, tissue may be biopsied.
Getting to this point is a very long journey for many women, and it’s one that’s gotten even longer in recent years.
Waiting times for specialist care increased pretty much across the board in the U.K over the pandemic, with some specialties affected more than others.
The amount of time it takes for a diagnosis has grown by 10 months since the start of the pandemic, and it’s a figure that varies across the nation.
In Northern Ireland and Wales, it takes almost a decade on average to get a diagnosis; 9 years and 5 months in the former and 9 years and 10 months in the latter.
Ranee Thakar, president of British medical society, the Royal College of Obstetricians and Gynaecologists, said in a statement that “timely diagnosis is crucial to ensuring that treatment and wider support can be in place to limit the progression of disease and manage symptoms.”
There a range of “complex” barriers to diagnosis, but “it is clear that more action is desperately needed.”
Thakar called for dedicated government action to improve waiting lists for gynecology services, which she says “grew disproportionately faster than other elective specialties” during the pandemic.
Normalization of ‘life-altering’ pain
A major driver of long diagnosis times is that most members of the public — and indeed the medical community — don’t realize severe and even “life-altering” pelvic pain simply isn’t normal for women, as the World Health Organization notes.
Almost 80% of those surveyed by Endometriosis U.K. said they’d been told by at least one doctor that they were simply making a “fuss about nothing” when they reported their symptoms.
Not only does this leave women feeling dismissed and ignored, but it slows down access to treatments that may ease symptoms.
Thakar said that national communications were needed to help women “feel confident seeking help,” as well as more clinicians with the expertise to spot and treat reproductive conditions, and more funds for diagnostic equipment..
Endometriosis U.K. chief executive officer Emma Cox says her organization’s findings “must be a wake-up call to decision makers to stop minimising or ignoring the significant impact endometriosis can have on both physical and mental health.”
She added in an emailed statement: “Now is the time to reverse the trend and make commitments to drive down diagnosis time for endometriosis and other menstrual health conditions.”
Government minister Maria Caulfield, who heads the country’s efforts to improve women’s health, said the U.K. had “a long way to go” to support women with endometriosis.
“From getting an initial diagnosis to getting the right care and treatment, we must learn from this report,” she said in a statement, adding that the condition was a priority in the government’s women’s health strategy.
Ministers were rolling out “women’s health hubs” to provide specialist care to women across the country, she said.
“We are working to turn dismissed, ignored and belittled into listened to, understood and empowered.”
