NEW DELHI: The condition known as endometriosis, often referred to as the "missed disease," impacts approximately 10 per cent of women of reproductive age worldwide.
A recent report in The Lancet highlighted the “unacceptably poor” care associated with this condition.
Emphasizing the importance of early diagnosis, the report called for governments to develop comprehensive plans with measurable targets and interventions to improve outcomes for individuals with endometriosis.
Additionally, the report stressed the need to address the cultural attitudes surrounding women's health, pain, and menstruation.
Endometriosis is a chronic gynaecological disease where tissue similar to the uterus's lining grows outside the uterus. It can cause severe pelvic pain, make it difficult to get pregnant, and can start at a person's first menstrual period and last until menopause.
According to Dr. Neha Gupta, Additional Director of Obstetrics and Gynaecology at Fortis Hospital, Noida, though it is estimated that 42 million women in India have endometriosis, many remain undiagnosed due to overlapping symptoms.
"Let's start by talking about it openly. Challenging the taboos surrounding women's bodies can encourage more women to seek help," she said, adding that with new research can only hope to get better solutions.
Termed the missed disease, owing to its unknown cause and long delays in diagnosis, endometriosis affects 10% of women of reproductive age globally.
Still, standards of care are unacceptably poor, the report said.
Dr. Aruna Kalra, Director of Obstetrics and Gynaecology, CK Birla Hospital, Gurugram, said about 30-50% of women with endometriosis may have infertility issues.
The report said menstrual pain, in particular, is widely normalised, which -along with taboos on discussing periods and other symptoms such as painful intercourse - means that many women delay seeking medical intervention or never seek it at all.
"If they do seek help, symptoms are frequently dismissed or belittled. There are volumes of data to this effect from high-income countries, but data are urgently needed from low-income and middle-income countries too," the reports said.
Dr Kalra said the silence around the topic needs to be broken, adding that support groups and educational programs may open the route for improvement in this area.
"Diagnosis could only happen if women talk about their mental well-being."
The Lancet said the condition's effect on quality of life is substantial, with many women experiencing chronic pain (more than two-thirds of women in the US report missing school or work as a result), along with high levels of comorbid anxiety and depression.
Cellular mapping could help determine the cause of endometriosis - termed the missed disease, owing to its unknown cause and long delays in diagnosis - and might pave the way for novel diagnostics and therapeutics.
Symptoms vary, but many women experience severe period pain along with other gynaecological and systemic symptoms such as heavy bleeding, difficulty conceiving, and fatigue.
The reports said a definitive diagnosis is made by laparoscopy, which is expensive and difficult to access as it requires surgical intervention.
Although high diagnosis rates following laparoscopy have been reported (up to 48% in Nigeria), prevalence is often said to be lower than in high-income settings, suggesting gaps in diagnosis are underestimating prevalence.
"As a result, there are wide disparities in access, with those from minority populations disproportionately affected," it said.
The management broadly includes surgical removal of tissue or treatment with hormonal therapies or analgesia - options that have remained essentially unchanged for decades and target symptoms only to varying degrees of effectiveness.
"Consistently poor outcomes for women with endometriosis highlights the profound effect of the women's health gap. Decades of neglect from funding and research has stifled medical innovation, and gender bias and sexism prevent women from receiving optimal care," it said.
Governments are slowly waking up to the substantial health burden of endometriosis.
Australia, France, and Denmark have national action plans on endometriosis (NAPE). Initiatives such as increasing awareness of endometriosis are valuable.
Still, governments also need to commit to quantitative targets, such as reducing the time required to diagnose and the waiting time for surgical treatment. Otherwise, holding governments to account is problematic.
"Advancing basic science is important because developing better treatments or diagnostics is nearly impossible without understanding the natural course of endometriosis. But no amount of medical innovation will change outcomes if women are prevented from accessing care," the report added.