Why Is Endometriosis Still Going Undiagnosed? MOJEH Investigates

14 min read
Photographed by Luca Meneghel for MOJEH 68

While nearly 10 per cent of women and girls around the world suffer from the debilitating pain of endometriosis, it’s still a condition that’s often dismissed. But in 2023, why is this still happening? MOJEH investigates…

When Alexa Chung spoke out recently about her struggles with endometriosis, having just received treatment for the condition while having a cyst removed, she gallantly shone the spotlight on a serious condition that, for one reason or another, is so often dismissed by medical experts around the world.

“A lack of research into endometriosis is typical of a gender disparity that has plagued medicine from time immemorial,” the model and influencer shared with her 6.1 million followers on Instagram. A disease in which tissue similar to the lining of the womb grows in places it shouldn’t, including the ovaries, fallopian tubes, outer surface of the uterus, bladder and bowel, endometriosis can not only be astonishingly painful to sufferers, but can cause heavy menstrual bleeding and difficulty conceiving too. It can cause structural changes in the reproductive organs, creating adhesions that can block or impair the fallopian tubes and impact the quality of eggs.

“The exact cause of endometriosis is not fully understood, but it could be attributed to various causes,” Dr Preeti Tandon, specialist obstetrics and gynaecology at Dubai’s Fakeeh University Hospital tells MOJEH. “Retrograde menstruation, where menstrual blood flows backward into the pelvic cavity, could be one possible cause, while hormone and immune system issues as well as genetic and environmental factors may also be at play.”

According to the World Health Organisation, this chronic condition affects around 10 per cent of women and girls around the world (the most recent regional study recorded in 2018 revealed the prevalence of endometriosis is 1.5 percent among Emirati women aged 18-55), yet much research has indicated that it can still take years for women to receive a diagnosis from their doctor. “Because endometriosis manifests itself in a variety of ways and shares symptoms with other conditions, diagnosis can be difficult and often delayed,” explains Dr Charles Nagy, consultant obstetrician and gynaecologist at Medcare Women & Children Hospital in Dubai, which earlier this year became the first in Dubai to receive the Gold Seal Accreditation as Centre of Excellence for Endometriosis Multidisciplinary Care (COEMEC) by the Surgical Review Corporation (SRC), USA. “Recent research shows that there is now an average of 7.5 years between women first seeing a doctor about their symptoms and receiving a firm diagnosis, with a laparoscopy — an operation in which a camera is inserted into the pelvis via a small cut near the navel — the only definitive way to diagnose the condition,” he adds. The hospital sees over 500 cases of complex endometriosis each year, with its success rate for pregnancy after global intervention for patients with deep infiltrating endometriosis at roughly 65 per cent, aligning with global standards.


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While pain medication, hormonal therapies and surgeries including minimally invasive laparoscopy surgery or, in more extreme cases, a hysterectomy are the most common treatment options to date, perhaps the most heartbreaking issue surrounding the topic of endometriosis is that, as it stands, there is currently no cure. “Some women may experience significant relief from symptoms and improved fertility outcomes from these treatments, but we have to remember that endometriosis is a chronic condition known to recur after stopping treatment or after surgery,” explains Dr Tandon. That said, doctors and researchers are uncovering more effective tools to manage the pain that comes with the disease, and just last month the SydneyRoyal Hospital for Women made a world-first leap forward that could change treatment and improve the health of women living with the disease. Having grown tissue from every known type of endometriosis, observing changes and comparing how they respond to treatments, the goal for researchers is to vary treatments for these different types, determining whether a woman will need fertility treatments. Until then, however, patients are left grasping for answers.

Dubai-based Claire Scowen is one sufferer who knows all too well the debilitating effect that endometriosis can have on a woman’s life.“I started my periods aged 13, but by my second one I knew something was wrong,” the 41-year old, who works in child protection within the emirate, tells MOJEH. “I would suffer intense pain that would lead to me shaking, sweating, vomiting, rolling around in pain and even, at times, passing out.” Claire was in and out of the GP office in her home country of the UK from the age of 14 looking for a cure, and it wasn’t until her late 30s that she was referred to a consultant. “I think lack of belief that my pain was as bad as I described, and a lack of understanding of the impact of endometriosis on my life played a part in me never receiving a diagnosis in the UK,” she explains. “There were many times I was told that my pain was ‘normal’, that it was ‘just period pain’ or that it would stop whenI had children, and I was given a multitude of contraceptive medications, all of which made me feel terrible both physically and mentally.” The contraceptive injection led to a whole host of other issues including a terrible outbreak of adult acne that went on for more than two years before Claire could see a skin specialist. “By that point I hated my body, a relationship that I am still working to repair,” she confides.


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As it turns out, Claire would finally find relief upon moving to Dubai two years ago, when a friend recommended a specialist who assured her it would be sorted within a year. “She was right, and I will forever be grateful for that advice,” she tells us. Dr Marla in at King’s College Hospital in Dubai Hills immediately confirmed the endometriosis diagnosis, and earlier this year she made the tough decision to undergo a hysterectomy while leaving her ovaries behind to prevent menopause. “I’d already reacted so badly to hormones that it was really my only option,” she explains. “I had mixed feelings about the decision, but it finally felt like I was taking my power back after years of having to plan my life around my periods and living in fear of the impending pain. Post surgery is the beginning of a new chapter for me, it’s just such a shame that I had to wait 27 years to get there.”


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Blame the limited knowledge of healthcare providers, its tangled knot of symptoms, normalisation of menstrual pain or the challenges of diagnosing the disease, but there’s no denying we need to do more to accelerate research around endometriosis in an attempt to finally bring relief to the millions of women who suffer worldwide. “Be it biases or stereotypes that downplay women’s pain or dismiss their concerns, but historically women’s health issues have not always received the attention and research they deserve,” says Dr Tandon.“Increasing awareness is crucial, and we need to empower women to speak for themselves, seek second opinions if needed, and engage in open and honest conversations with their doctors to overcome the barriers to a timely diagnosis.” They do say every cloud has a silver lining, and in recent years there has been a growing recognition of the need to address these disparities and invest more in women’s health, with advocacy groups, patient communities, awareness programmes and doctors working tirelessly to improve access to care and promote research funding into endometriosis. “Yes, progress is being made, but there is still work we can do,” she concludes. “We need to keep fighting to ensure that every aspect of women’s health, including endometriosis, receives adequate care and attention, and even more so going forward.” For every woman who has to pick herself up off the bathroom floor every month, it’s the least we can do.

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  • Words by Naomi Chadderton