Interview has been edited for clarity.
The picture that emerged from that was really pretty similar across the board and across different countries, says Dr. Zondervan. “In particular, endometriosis-associated pain affects people who have it to a considerable extent in their daily lives. And it also affects their working lives.”
She says that people with endometriosis often said that they were often having to cope with pain, which made them less productive, although they tried very hard to not miss work.
“So clearly, that impacts society, their own working lives, and also society at large. This was a group of women who were surgically diagnosed for the first time with endometriosis, so their symptoms were severe enough for them to receive that diagnosis. On average, they experienced about 11 hours a week of reduced effectiveness at work, which is really substantial.”
Dr. Zondervan says that the economic cost of endometriosis to society has been calculated to be similar to really well-known public health conditions like type 2 diabetes and asthma.
“Endometriosis similarly impacts people’s lives and the economy. I think it is important for that to be recognized,” says Dr. Zondervan.
Endometriosis and genetics: What’s being researched currently?
“We do not understand enough about how the disease originates,” says Dr. Zondervan.
Once endometriosis is present, quite a bit of progress has been made about understanding it biologically, how it stays there, and how it is maintained.
Dr. Zondervan says, “For example, there’s some great work by colleagues worldwide that looked at endometriosis deposits and found that these don’t just rely on hormones that are circulating through the body, but they produce their own little hormone supplies as well. It almost becomes a way for these deposits to maintain their growth. The understanding of how that works and how those deposits manage to stay there — I think that knowledge is now accumulating. It revolves a lot around local hormonal supply.”
Dr. Zondervan says that what we really need to focus on now is how these deposits get there in the first place and how we can prevent that from happening. “One line of our work is a very large-scale collaboration with 25 research centers worldwide to try and see what genetics brings to this. If we understand a bit more about which genes are involved in increasing your risk of disease, that could tell us something about what the underlying biology is. And I think that’s really important for a condition like endometriosis. When we have very little knowledge of what the actual disease process is, that can tell us something.”
She adds, “We can all have research hypotheses and go down certain research avenues, but ultimately those are “hunches,” and they might not be true. Genetics can give us what we call an unbiased approach into what the underlying causes of this disease are.”
Dr. Zondervan hopes understanding the genetic aspect will clarify two important things:
- Subtypes of disease that would be differently genetically regulated
- Better treatments for endometriosis
Once the genes and biological pathways that are involved are identified, specific drugs to target those pathways can be created. According to Dr. Zondervan, this is not just an approach in endometriosis: genomics is a field that is burgeoning worldwide to help understand many different diseases.
Endometriosis and immunology
Dr. Zondervan says that another really exciting area in relation to endometriosis, and one that’s very complex, is immunology.
“You know the question always is, ‘How come these endometrial cells that are shed every month manage to stick to the pelvic walls, but they’re not cleared up by the immune system? Why is that?’ And there are a lot of groups worldwide that are looking at that specifically and in relation to the inflammation that occurs, which is part of the immune reaction. I think trying to understand that process better may help get better treatments into the market.”
History of updates
Current version (11 December 2021)
Medically reviewed by Krina Zondervan, MSc, PhD, Professor of Reproductive and Genomic Epidemiology, Co-Director of the Endometriosis Care and Research Centre, UK