UAE experts urge action as endometriosis diagnosis delays take up to 20 years

Women with endometriosis can face a wait of up to 20 years before the disease is diagnosed, with UAE doctors saying the delay in local hospitals can be between seven to eleven years.

Delays in diagnosis can be due to non-specific symptoms and low levels of awareness about the condition in the community.

“There may also be biases or stereotypes that downplay women's pain or dismiss their concerns, contributing to delayed diagnosis and inadequate support,” Dr Preeti Tandon, consultant gynaecologist at Fakeeh University Hospital in Dubai who specialises in treating patients with the disease, told The National.

Endometriosis is a chronic condition in which tissue similar to the lining of the uterus grows outside of the organ.

It is often associated with severe, life-impacting pelvic pain and fertility issues, according to the World Health Organisation.

The disease affects about one in 10 reproductive age women and girls globally.

The specific causes are unknown and there is currently no cure, but with access to early diagnosis and effective treatment, women are better able to control their symptoms and improve their quality of life.

Debilitating for women

Dr Toni Zink, a family medicine specialist at Nabta women's health centre in Dubai, said living with undiagnosed or untreated endometriosis can be “extremely challenging and debilitating for women”.

If unchecked it can lead to chronic pain, menstrual irregularities, fertility problems and mental health issues.

It is crucial for women experiencing symptoms suggestive of endometriosis to seek medical evaluation as soon as possible, said Dr Zink.

It took eight years of struggling with chronic symptoms until Dubai resident Charlene Ryan, 39, had the disease diagnosed in Ireland, her home country, just before she moved to the UAE in 2015.

“They thought I had appendicitis, but during the laparoscopy they realised it wasn't that and it was endometriosis instead. They discovered it by fluke,” she told The National.

Once diagnosed it didn't get any easier, said Ms Ryan, who was told to treat her symptoms using the contraceptive pill.

“They said come back in six months and see how you're feeling,” she said.

After she moved to Dubai, Ms Ryan tried to manage the symptoms on her own, as she struggled to find a suitable doctor.

“I couldn't find a doctor who would take me seriously. I kept being told to exercise, lose weight, all that kind of stuff,” she said.

She was eventually put in touch with Dr Marlain Mubarak at King's Hospital Dubai Hills in 2019, who diagnosed her with stage four endometriosis within a week.

However, due to the lack of appropriate care and treatment previously, Ms Ryan developed a “frozen pelvis”, where organs become stuck together, and bowel disease.

She had to have triple bowel resection surgery in November, during which Dr Mubarak was also able to remove 90 per cent of her endometriosis.

“Now I feel like a different person,” she said.

Delayed diagnosis can be common

Dr Tandon, who has worked for 10 years in the UAE, said about 10 to 15 per cent of young girls and women visiting her clinic are suffering from diagnosed endometriosis.

“In recent years, there has been a significant increase in the number of women being diagnosed,” she said.

“With increasing awareness, more and more younger women are visiting with pain symptoms and being diagnosed with endometriosis.”

While there are no conclusive national statistics, a 2018 study found an estimated prevalence of the disease at 1.5 per cent among Emirati women aged 18 to 55.

Patients will typically have dysmenorrhoea, or pain related to the menstrual cycle, and period irregularities, as well as fertility issues, painful sexual intercourse, bowel symptoms and/or constipation.

Doctors will consider a patient's history and perform a pelvic examination.

But currently the only way to definitively diagnose endometriosis is with laparoscopic surgery, which is invasive and may not be performed unless symptoms are severe and other conditions are ruled out.

As many of the symptoms can be attributed to other conditions, misdiagnosis or delayed diagnosis can be common, said Dr Zink.

“Many local hospitals have reported that it can take seven to 11 years for patients to receive an accurate diagnosis,” she said.

While regional statistics on endometriosis sufferers are lacking, these findings are consistent with a 2021 study on the impact of endometriosis in women of Arab ancestry, published in the journal Frontiers in Global Women's Health, which discovered the average diagnostic delay was 11.61 years.

Eighteen per cent of participants experienced more than a 20-year delay, the study revealed.

Dr Tandon said she has found it takes an average of about seven to 10 years to receive a diagnosis.

Dr Amin Hassan Abdelmagied, a consultant in obstetrics and gynaecology at Danat Al Emarat Hospital for Women & Children in Abu Dhabi, said he's seen many cases where it takes longer than the global average of seven to eight years.

“The impact of endometriosis is often underestimated,” he said.

Awareness is crucial

Dr Zink said the lack of knowledge of endometriosis and its symptoms among women and healthcare providers can often lead to a delay in patients seeking medical attention or proper evaluation.

Attitudes towards menstrual health can also impact diagnosis, she added.

“Societal taboos around discussing menstrual health openly can lead to women dismissing or downplaying their symptoms, again delaying seeking medical help.”

Dr Tandon, a specialist in laparoscopic surgery, said it also depends on the chosen healthcare facility and provider.

“Training among health professionals regarding diagnosis and treatment modalities medical and surgical dictates the outcome of the patient,” she said.

“Treatment needs to be tailored according to the patient’s age, symptoms and desire to enhance or preserve fertility.”

This can include pain management, hormonal therapies, various surgeries and assisted reproductive treatments. It may also require a multidisciplinary team to care for a patient, depending on the severity of their disease.

“It is important for patients to seek care from a healthcare provider with experience in managing endometriosis to ensure optimal outcome,” said Dr Tandon.

Improved care

Dr Tarek Turk, chief medical officer at TruDoc Healthcare, said the level of care in the UAE has “significantly improved” in recent years.

“However, there may be variations in the availability of specialised centres and multidisciplinary care teams compared to more established healthcare systems,” he added.

“Patients with endometriosis need a full support system, not only a consultation with a doctor.”

Dr Abdelmagied, who says Danat El Emarat sees about 25 endometriosis patients every week, said these challenges highlight a need for specialist multidisciplinary endometriosis centres, which could help “shorten a patient's journey of suffering”.

“While it is true that diagnosing endometriosis is a crucial step, it actually marks the beginning of a new phase in dealing with the condition and not the end of it,” he added.

Ms Ryan has also struggled with fertility issues as a result of her endometriosis, but she still believes she is one of the lucky ones.

“I don't know if I was still in Ireland or the UK, I would still be suffering or would have had to pay to go private. I don't know if I would have got the same in-depth care and aftercare I had here,” she said.

If she hadn't been treated when she did, it could've been much worse, she added.

“It could have become something else, or could have developed into something cancerous,” she said.

“People think this is just painful periods, but it's not. I sometimes couldn't get out of bed, one time I had to lie on the floor of Mall of the Emirates crying from pain. I thought someone was trying to stab me.

“Your whole being is affected.”

Dr Turk said it is imperative for women to advocate for themselves and openly discuss symptoms with healthcare providers, as early intervention is key to improved outcomes.

Ultimately, if something is not right, don't ignore it, said Ms Ryan.

“See your doctor and if you're not getting answers, keep going and find another doctor.

“Endometriosis doesn't get enough coverage. It's a disease and it can seriously affect you.”