When it comes to hot-topic issues that sit at the centre of the Venn diagram where politics, society, gender and medicine meet, it’s unlikely that endometriosis is the first thing that springs to mind. The word itself is kind of unwieldy. All those syllables – six in total – for starters. If you find yourself in need of saying it, it’s one of those words that gives you pause for thought – does it end in ‘-itis’, or is it ‘-osis’? It’s a mouthful.

Derived from the Greek ‘endo’ meaning ‘inside’, ‘metra’ for ‘uterus’ and ‘osis’, ‘disease’, its very meaning is vague and unspecific – after all, there are many uterine conditions. But for women who appreciate irony, its very vagueness seems suitable, because it’s one of those diseases that used to be, and unfortunately often still is, considered under the umbrella term of (whisper it) “women’s problems”.

Ah, women’s problems. Periods, menopause, fertility, ovaries… You know, stuff that goes on down there. All of which makes it impossible to talk about endometriosis without considering the disease within the wider scope of the institutionalised gender bias against – and the under-representation of – women’s problems in medicine. But let’s start with the basics.

Endometriosis is a disease in which a woman’s cells, such as those in the endometrium, the layer of tissue that normally covers the inside of the uterus, grow outside the uterus instead. 

The tissue can grow on or around the ovaries and fallopian tubes, as well as on the bowels, stomach, bladder, and cervix. According to the World Health Organisation, endometriosis affects 10 per cent of women worldwide – that, by today’s numbers, is around 190 million individuals. Its symptoms and effects on fertility, menstrual cycles, and mental health are not widely publicised, and lack in-depth study. No one really knows what causes it. There is no cure.

“Endometriosis is an enigma,” says Dr Arva Dhanaliwala, consultant obstetrician, gynaecologist, and specialist in reproductive medicine and infertility at Orchid Reproductive and Andrology Services in Dubai. “Sometimes, it can take up to 10 years for women to be diagnosed with endometriosis. They may be referred to different medical departments as the symptoms can often be non-specific, leading to a delay in diagnosis.”

Endometriosis expert Dr Elias Abi Khalil adds, “It is often hard to diagnose due to the fact that symptoms can often overlap with other conditions, and imaging in early stages of the disease is not confirmatory.”

The symptoms of endometriosis are wide-ranging and varied, often intersecting with an array of other possible conditions. The milder symptoms often present as what women have traditionally called “period pains”.

“Symptoms most commonly present as severe menstrual cramps radiating to the lower back and legs and chronic pelvic pain,” says Dr Divya Sinha, specialist in obstetrics and gynaecology, Aster Clinic, Oud Metha. “There can be pain during the passing of stools, especially during menstruation, and it can also present as a deep, aching pain during intercourse. Other, rarer symptoms include fatigue, nausea, bloating, and painful urination.”

While endometriosis can run in families, the heritability of the disease can vary – this means it can develop in some women but not others, irrespective of genetics. Even today, very little is known about the disease’s causes, although hormones – particularly elevated levels of oestrogen – the immune system, and menstrual flow are all cited as possible causative factors, alongside genetic predisposition.

Samira, 34, an Abu Dhabi-based mother-of-one (she asked that we only use her first name) had always thought the intense period pains she suffered as a teen were, as she puts it, “just part of being a woman.”

“You grow up hearing about period pains from other women, friends and family, so you just assume that what you’re feeling is part of the female experience,” she says. “Even when I’d be laying on the sofa with a hot water bottle on my lower stomach, having taken extra-strength painkillers, I still just thought, ‘Oh, this is what every woman goes through each month. I shouldn’t complain.’” 

“It wasn’t that I thought the doctor wouldn’t take me seriously or listen to me,” she continues. “I convinced myself that what I was going through was normal, and that a doctor would just send me away with some Ibuprofen. I guess I sort of dismissed my symptoms myself.”

It was only after she got married, and she and her husband tried to conceive, that Samira began to realise the extent of the problems that had plagued her for years. Finally, a meeting with her doctor led to her endometriosis diagnosis at the age of 30.

“We tried to get pregnant for about 18 months before seeking help,” she explains. “I feel very fortunate that my doctor asked a lot of questions, which led to me to talk about the pain I would experience before and after my period. It was a relief to be told, ‘No, this is not normal. You need to see a specialist.’”

The effects of endometriosis on fertility, though understudied, can range from making conceiving difficult to impossible. Endometrial tissue around the ovaries or fallopian tubes causes inflammation and scar tissue, which in turn can grow into the muscle of the uterus, causing another form of endometriosis, called adenomyosis. 

The condition can affect the immune system by altering the hormonal environment around the eggs, inhibiting embryo implantation and changing egg quality. 

“Endometrial spots on the ovary or around the uterus and fallopian tubes will release chemical substances when the woman is menstruating,” says Dr Dhanaliwala. “These cause adhesions that can then distort the anatomy or cause a blockage of the fallopian tubes. Endometriosis also affects the quality of the eggs in the ovarian reserve, and can compromise the endometrial receptivity. These systemic effects of the disease make it difficult for women to get pregnant.”

Diagnosis is achievable in a few ways – a discussion of symptoms, combined with a pelvic exam, is usually the first step.“Imaging tests such as ultrasound or MRI can detect larger lesions or cysts, but often miss smaller endometrial implants,” says Dr Khalil. “There is also the salivary test that detects microRNA and protein linked to endometriosis in saliva, but this is still experimental.”

“The gold standard for diagnosis of endometriosis is a diagnostic laparoscopy,” adds Dr Dhanaliwala. “However, this is an invasive procedure. If the woman has an endometrial cyst – commonly called a ‘chocolate’ cyst – this can be picked up on ultrasound scans.”

Once diagnosed, treatment varies according to the symptoms, the severity of the disease, and the patient’s desire to have children. “Treatment can be medical or surgical,” says Dr Dhanaliwala. “For a young woman who doesn’t wish to get pregnant, the oral contraceptive pill –either the combined or progesterone-only – is a good treatment option. If the woman is only having painful periods, then non-steroid anti-inflammatory drugs such as mefenamic acid would be a good option. If the woman has severe pain or has a chocolate cyst, then she needs laparoscopy and surgical management. For women who have chosen to not have children, having the progesterone-releasing IUD such as Mirena or GnRH analogue injections are treatment options.”

Because the disease only affects women, and because of where it occurs in the body, endometriosis cannot just be viewed as a medical condition. Its continual misdiagnosis, dismissal of symptoms, and astounding lack of research is indicative of a wider problem concerning the under-representation of research into female-specific diseases.

In 2022, Dr Edward Morris, President, Royal College of Obstetricians and Gynaecologists, told the UK’s Guardian newspaper that language around gynaecological issues needs to be addressed so that they can be taken more seriously. “We have to change the language – we have to call it what it is,” he said. “These conditions cause huge amounts of suffering to women. Being lumped in a topic called benign gynaecology downplays the importance and suffering.”

That same year, also in the UK, the Department of Health and Social Care reported that 84 percent of women sometimes felt that healthcare professionals were not listening to them. Clearly, there is no doubt that the issue goes well beyond just what’s happening ‘down there’.

“There are a lot of conversations about being a woman or information we are exposed to which can make you think you’re over-reacting or you shouldn’t make a fuss about something,” says Samira. “When I look back, I feel sorry for the younger me, who genuinely thought being in pain for two weeks of every month was simply the price you pay for being a woman.”

Cover photo: Katherine Streeter