Why we know so little about this disease

It’s time, writes Abbey Lissaman, for doctors and researchers to focus on a debilitating health issue that affects 10 percent of women worldwide

We know how the heart works quite well. We know a lot about how the brain works. So why do we know so little about how the uterus works?

This lack of knowledge has devastating consequences. Worldwide, 176 million people face life with a debilitating disease that causes severe abdominal pain and heavy bleeding. This means 176 million people are routinely forced to miss school, work, and social events because of the agony caused by their condition.

Worse, those 176 million people often lack any clear advice on what is happening to them. These people wait an average of 8.5 years for a diagnosis because their condition is so under-researched, and their symptoms are often considered normal or unremarkable by physicians.

This is the reality for the estimated 10 percent of people with uteruses who suffer from endometriosis. Endometriosis, or mate kirikōpū in te reo Māori, is a disease in which cells that resemble the internal lining of the uterus (the endometrium) grow outside of the uterus, and adhere to the ovaries, fallopian tubes, bladder, and pelvic wall.

These cells respond to brain signals and hormonal fluctuations throughout the menstrual cycle, indicating the need to thicken or break down and shed, just as the endometrium would during a period. However, unlike the cells inside the uterus, these cells have no way of exiting the body, and instead cause significant pain and inflammation for those who suffer from the condition.

Research concerning people with uteruses often seems to be a forgotten field. Despite the prevalence of mate kirikōpū in Aotearoa New Zealand and worldwide, there is a dearth of research on potential causes, treatments, and cures.

Part of the reason for this is that menstrual cycles are considered too difficult to control for in studies with human (or even animal) subjects. Our hormones go up and down at different points in the cycle, and that can dramatically affect results. However, this means a large subset of the population is being ignored, simply because it’s complicated.

Secondly, mate kirikōpū tends to be overlooked, as a necessary research subject and as a potential diagnosis in the people who have it. Most people with uteruses identify as women, and there is a strong argument that sexism lies at the root of this problem.

If endometriosis is researched, the focus tends to be on its impact on fertility. While endometriosis does have a detrimental effect on people’s ability to conceive, this potential outcome tends to be viewed as more important than the simple need to prevent the extreme pain experienced by those with the condition. This should not be just about having babies. It is just as important to consider the impact on quality of life outside of reproductive capacity.

Part of the issue is that other areas of women’s health that would inform my research are also chronically understudied. When I was looking at early placenta development, for example, it became evident that much of the initial research on placental biology was published just a few decades ago, so it’s significantly lagging behind many other fields.      

Indeed, the human endometrium is so understudied that we do not fully understand the normal state, let along its pathology.

With this background in mind, my research looks at the epigenetic regulation of the human endometrium. Essentially, we all have the same genes for everything, but there are certain factors that can attach to the genes to turn their expression on and off. These are called epigenetic modifications.

At different points of your life and at different stages of the menstrual cycle, a lot of different things are happening – some genes are active at some points, and others are active at other points. We have these modifications that turn genes on and off at the appropriate times. When that modification goes wrong, it can lead to things like endometriosis.

The exact process of how it happens is not very well researched. It’s only a small part of how endometriosis develops – there are many other factors – but epigenetic modification going wrong is one of the possible mechanisms.

By comparing normal endometrial tissue with tissue from people with mate kirikōpū, my research aims to observe the modifications on certain specific genes to see what is silenced and what is active in both groups.

Endometriosis exacts a heavy toll. Endometriosis can only be officially diagnosed through invasive laparoscopic surgery. The problem is that surgery is inherently risky, there are long wait times to be booked for the surgery in the public system, and, without health insurance, the procedure will cost the patient thousands of dollars. Because of this, the more research done into potential diagnostic tools for endometriosis, the better.

The cause of mate kirikōpū itself remains a mystery, so treatment is very limited too. We’re still learning about how our bodies work and how the endometrium works. It simply hasn’t received the attention it deserves. It is time to take those 176 million people seriously