What next?

We are still on the search for a non-invasive diagnostic tool, a cause and a cure. And research is happening all over the world to find these answers. As you wait for your diagnosis, the research may change the landscape.

This research must be done in collaboration with patients - too long people with endometriosis have been ignored and dismissed. Whose voices are out there that we should be listening to but aren’t

What is being researched?

What is the correlation between symptoms and the extent of the disease? How will this knowledge improve diagnosis and treatment? These are all questions scientists around the globe are beavering away to find the answers. Many of the “Into the Unknown” questions in this exhibition are being actively researched.

Endometriosis CaRe is a research group based at the Wellcome Centre for Human Genetics, and the Nuffield Department of Women's and Reproductive Health at the University of Oxford. They are working on understanding many of the questions highlighted in this exhibition.

The Social Sciences Endometriosis Network is an international network that promotes social, psychology, and humanities research on the condition. It convened in 2023 the world's first academic conference to bring together endometriosis social science and humanities researchers from around the globe alongside researchers, patient advocates, charities and authors

The University of Edinburgh is currently running a clinical trial called ESPriT2. It was found that 90% of patients who underwent surgery for endometriosis reported their pain returning within two years. The trial is trying to determine if surgery is helpful, harmful or of no benefit at all.

Did you know there are different types of pain? The Oxford Sparks Big Questions Podcast features Dr Lydia Coxon, a researcher in the Nuffield Department of Women's and Reproductive Health. Dr Coxon is looking at the mechanisms that cause pain in patients with endometriosis. Through her research, she hopes to understand how it can be treated more effectively.

Endometriosis and genetics

There are hundreds of genes which contribute to the disease. Gene mapping studies are being used to identify these genetic variants by comparing the genomes of people with endometriosis to people without it. 

The identified genetic variants are starting to illustrate that there are subtypes of endometriosis, which may present differently and respond differently to treatment. However, we need larger, more ethnically diverse studies to fully understand the genetic basis of the disease. 

Can endometriosis be diagnosed in other ways?

The “gold standard” to definitively diagnose endometriosis is often surgery, though specialist centres can do it through ultrasound. There is huge interest in developing a non-invasive diagnostic test such as a blood test. This would make diagnosis faster and easier. Lots of groups around the world are working on this. 

Endometriosis is under-funded and under-researched. And it all comes down to this: stigma and discrimination. 

A huge part of this is the gendering of the disease. Diseases more likely in women and people assigned female at birth are less likely to be funded than ones dominated by men and people with penises - even when they have a similar level of impact on a person’s life. The UK has the largest gender health gap in the G20. There is even less research looking at the impacts of endometriosis on people of colour, queer people and gender diverse people.

Why do we know so little?

How much funding does each type of health condition get in the UK?

Yentl Syndrome

Amazon.com. Fair use image. Taken from: en.wikipedia.org/w/index.php?curid=23133984

In the 1963 short story “Yentl the Yeshiva Boy” by Jewish writer Isaac Bashevis Singer, the titular character dresses as a man in order to attend yeshiva (a Jewish religious academy) to study Talmud. The story was adapted into a movie in 1983 starring Barbara Streisand.

In 1991, “Yentl Syndrome” was coined by American cardiologist Bernadine Healy to describe the sex-bias in coronary heart disease. Because women and people assigned female at birth tend to have different heart attack symptoms to men and people assigned male at birth, they are less likely to receive treatment. 

Just like how Yentl had to dress as a man to get what she needed, only once a person has symptoms similar to the typical male ones, do they get treatment. 

  • What is Endometriosis?

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  • Normal or not normal?

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  • The medical pathway

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  • What next?

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  • Let's talk about it

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  • Making the unknown known

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