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Why it's good news that some day people might be able to test for endometriosis at home with used tampons

It’s estimated that between 10-20% of people at childbearing age have endometriosis.
Feb 20th 2019, 1:27 PM 3,159 1

shutterstock_1149864647 Source: Shutterstock/YM studio

THIS WEEK, DIGITAL media company MIT Technology Review published an article written by reporter Dayna Evans, who met two people who are hoping to improve life for anybody who happens to have a womb. 

These two people were Ridhi Tariyal and Stephen Gire, and they run a startup called NextGen Jane in Oakland, California. The story of how Ridhi Tariyal got where she is today is naturally quite long, and includes a list of impressive academic achievements, but one part of her story that really stood out was her experience with seeking healthcare as a woman, as it’s something that many of us can relate to. 

With plenty left to do in her career before Tariyal will feel ready to settle down and have kids, she paid a visit to her doctor to do an anti-Müllerian hormone (or AMH) blood test – this would give her a solid estimate of how many viable eggs she had left at the age of 33. 

Her doctor didn’t see the need and wouldn’t order it for her. And she was shocked by what the doctor suggested as an alternative: simply try to get pregnant to find out if she could. This left Tariyal so alienated and frustrated that she decided her only option was to create her own AMH test that women could perform themselves at home. 

She didn’t want anybody else to feel the way that she had felt, so she turned to Stephen Gire for some help. Without going too much into the science-y stuff, she wanted to see if it was possible for women to use their menstrual blood in lieu of blood drawn from veins so that they could conduct these tests themselves, without needing a doctor to draw their blood and send it to a lab for analysis. 

shutterstock_651712192 Source: Shutterstock/MasAnyanka

Unfortunately, things didn’t work out. There’s still a lot more work that needs to be done on that front, and while Tariyal was disappointed, she was also very intrigued by the fact that she had stumbled upon “clear genomic signals in menstrual blood”, and she began to consider the other possibilities. 

With funding of $100,000 and six months of access to genome sequencing equipment at a startup accelerator run by the genomics company Illumina, she and Gire continued to look at menstrual blood samples. In particular, they hoped they might be able to reliably detect changes in gene expression that Linda Giudice, a doctor at the University of California, San Francisco, had recently discovered in women with endometriosis. 

By 2015, Tariyal and Gire had used up their funding and their access to Illumina’s genome sequencing equipment ended, but Tariyal’s startup NextGen Jane are still completely convinced that it’s possible to develop “direct-to-customer tests for endometriosis and other diseases” affecting individuals with uteruses. 

Tariyal, Gire and several other firms believe that in the near future, all it will take to detect conditions like endometriosis and diseases like cervical cancer will be a used tampon, which can be sent for screening.

Needless to say, this would be a huge breakthrough, particularly for people who are terrified of smear tests. It may even allow more regular testing and easier access to tests for people under the age of 25, who are often told that they don’t need them. 

shutterstock_1022379469 Source: Shutterstock/Tatyana Ratova

The research is also incredibly important because it could be a far less intrusive way of diagnosing endometriosis, a condition which often goes undiagnosed anyway. As Dayna Evans explained in ‘What if you could diagnose endometriosis with a tampon?‘:

Surgeons diagnose endometriosis – an abnormal growth of endometrial tissue outside the uterus – by inserting a small camera into the pelvic cavity to look for endometrial cells in places other than the lining of the uterus, the only place they should normally grow. If wayward cells are found, the diseased tissue can often be removed on sight. But the average woman diagnosed with endometriosis has already had the disease for over a decade, which can mean years of excruciating pain. 
Women often believe such pain is normal, so they don’t seek treatment. 

Anybody who has ever made a doctor’s appointment to discuss severe period pain will likely know what happens. If you’re lucky, you’re offered Ponstan. You’re offered the pill. You’re sent on your way. There may be little or no change, or maybe there’s some improvement, so you get on with things and continue to dread that part of the month. If you’re unlucky, the doctor will tell you that’s completely fine and normal or that everybody’s period feels like that. 

shutterstock_1252458379 Source: Shutterstock/BATMANV

A product that allowed for home testing of endometriosis (never mind cervical cancer) would be welcomed with open arms by about half of the world’s population. And yet, here we are. The main reason Tariyal and Gire can’t get funding for their research is because, well basically, nobody cares about women’s health outside of reproduction. 

Tariyal wrote an article for The Washington Post last July, entitled, ‘To succeed in Silicon Valley, you still have to act like a man‘, in which she discussed the parts of herself she has to act up or play down in order to be listened to or even acknowledged. She spoke about her ideas to screen used tampons for disease in this article and said that she has been repeatedly told:

“Strip the deck of “menstrual blood” and call it a novel female substrate. Don’t say you’re a “women’s health” company. It signals a lack of scientific heft.” I understood them to mean: Try to look as little as possible like what you really are – a woman-led company utilising female biology to advance healthcare for half the population. 

We can all recognise the huge impact that a service like this could make. Particularly those of us who know someone with endometriosis or suffer with it ourselves. Early detection could make a huge difference, not just in endometriosis, but cervical cancer and the other diseases that could potentially be detected in menstrual blood. 

At present, this type of technology is, at the very least, two years away from clinical trials because of the struggle to attract the millions of dollars of funding necessary for the project, but nothing’s impossible. At least we know that there are people out there who are dedicated to researching aspects of women’s health that were previously deemed unimportant, even though they are often met with hostility. 

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Kelly Earley

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