“I was misdiagnosed by about 10 doctors who trivialised my pain and thought that I was stressed,” says Sravya, a neuroscience PhD student who finally received an endometriosis diagnosis in 2019.

Endometriosis is a debilitatingly painful condition, where tissue similar to the lining of the uterus starts growing outside it. Despite increasing research interest in the disease, diagnosing it remains a challenge. And although it affects almost 247 million people worldwide and 42 million people in India alone, patients have to wait an average 6.7 years for diagnosis. In India, this wait period is likely to be longer because of various sociological factors like stigma.

In my case, I suffered from the symptoms for over 14 years and saw at least seven doctors until I was finally diagnosed. During this course, I was often dismissed or sometimes misdiagnosed, which is very common because endometriosis has symptoms similar to other conditions, such as appendicitis or irritable bowel syndrome. This further adds to the delay in correct diagnosis and treatment, prolonging patients’ suffering.

“While other people were out there figuring themselves out, I was in debilitating pain, struggling to make ends meet and not knowing what was wrong with me for so many years,” says Sravya.

One of the major reasons for the delay in diagnosis is the lack of reliable non-invasive diagnostic methods.

“Imaging like MRI and ultrasound cannot identify all forms of the disease and outcomes are heavily dependent on who is imaging and analysing the images as the ability to identify the disease is not present among a lot of practitioners,” explains Dr. Abhishek Mageshikar, director at the Indian Centre for Endometriosis. “So, laparoscopic surgery still remains the gold standard because we identify the disease and excise it at the same time.”

The fact that surgery is needed for simply diagnosinga condition as common as endometriosis speaks to the extent of difficulty women have had to deal with when accessing basic healthcare. But new, groundbreaking research could likely put all of this in the past.

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Scientists have recently identified microRNAs, part of our genetic material, that are unique in endometriosis patients and thus can be used as biomarkers to diagnose the condition. MicroRNAs from saliva as well as from blood are currently being explored as diagnostic biomarkers. In fact, DotLab, a US-based company has patented a blood test for microRNA markers to diagnose endometriosis.

Essentially, testing for endometriosis could become as simple as performing a blood test or collecting a mouth swab. The DotLab blood test is a first-of-its-kind, non-invasive method to reliably diagnose endometriosis – which is appalling, considering that endometriosis was first described in 1860.

The new research has the potential to drastically change millions of lives. “Looking back, an earlier endometriosis diagnosis would have saved my family and me years of pain, confusion, and financial stress,” said patient Caitlin Hale, talking about the blood test.

In India – where discussions surrounding menstruation are still taboo and patients hesitate to undergo procedures like transvaginal scans – the absence of non-invasive tools also means that the stigma around women’s reproductive health is worsened.

Moreover, because of a societal conditioning that expects women to suffer silently, patients’ pain is often not taken seriously. Sravya faced this until she was finally diagnosed. The doctors she consulted often told her that her pain was all in her head. “It would have been so much easier for patients like me if someone had found a way to diagnose endometriosis using simple blood tests,” says Sravya.

She brings up another critical point that underlines the enduring importance of tools such as this: “[Non-invasive tools] are not just important for the initial diagnosis, but also for follow-ups. Endometriosis is a chronic condition, which means patients have to be periodically checked to ensure there is no relapse after the initial treatment. Every single time we go for a routine check-up, we have to experience the pain caused by diagnostic tools like a transvaginal scan, which also leads to worsening of our pain for at least a day. Non-invasive tests will encourage patients to go for more regular follow-ups, which are important for us because we can’t predict the rate at which endometrial growths can develop and affect other organs.”

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It’s important to note here that the new tools are not yet capable of being medically exhaustive. “The microRNA tests cannot give details on how much endometriosis is there and which organs are involved,” explains Dr. Abhishek Mangeshikar. “However, they are useful in screening and may be beneficial in identifying the forms of endometriosis which cannot be detected using imaging.”

Further, as most endometriosis patients know, diagnosis is just the first step. As soon as I was diagnosed, my doctor suggested that I get married and become pregnant to help with the pain. I was put on hormone medication to manage the pain, which affected my mental health. Sravya, echoes my experience. “I was subjected to a lot of misogyny, where I was told to get married and have children when in fact my pain should have been given top priority…”

This misogyny, stigma, and ignorance surrounding women’s health is unlikely to disappear simply because of advancement in technology.

Dr. Mangeshikar agrees. “I don’t know if the approach to endometriosis care is going to change,” he says. “If a symptomatic patient tests positive, are they going to be directed to appropriate care, or will they have to deal with the same problems that patients are currently facing where they are told to get pregnant or put on medication to suppress the period cycle?”

Endometriosis is a challenging disease for both patients to deal with and doctors to treat. However, more reliable tools that enable faster diagnosis can greatly reduce chances of misdiagnoses, which is an important first step in the long journey to treating the disease. These tools will also help validate patients who are led to believe that it is “all in their heads,” becoming a significant step in fixing the endometriosis treatment pipeline. Especially with regard to our country, we may be moving slow, but we are certainly moving in the right direction.