Improving endometriosis diagnosis through research and awareness

James J. Latham

“We urgently need more research to better understand the basic biology behind the development of endometriosis.” – Lisa Halvorson, M.D. Along with the growing awareness about endometriosis and how many women it affects, researchers have also been working to better understand the disease and its symptoms, so they can improve […]

Along with the growing awareness about endometriosis and how many women it affects, researchers have also been working to better understand the disease and its symptoms, so they can improve diagnosis and treatment—and ultimately find a cure.

NIH MedlinePlus magazine spoke with Lisa Halvorson, M.D., chief, Gynecological Health and Disease branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Dr. Halvorson discussed the latest endometriosis research and goals for future treatments.  

What prompted NICHD researchers to do research around endometriosis?

NICHD has a strong interest in supporting research which improves women’s reproductive health. Endometriosis is a common disease that is debilitating for many women and a substantial cause of infertility. We do not understand the causes of this disorder and have limited options for diagnosis and treatment. There is enthusiasm for pursuing all of the unanswered research questions since they may have a significant impact on women’s lives.

What’s the latest in National Institutes of Health (NIH)-supported endometriosis research?

NIH has supported work which has led to the development of new treatment options for endometriosis. One of these is the newly available oral medication, Elagolix, which has proven effective for treating endometriosis pain. However, this medication can have side effects and women on this medication cannot get pregnant. Therefore, additional studies are being supported to identify other treatment options.

We urgently need more research to better understand the basic biology behind the development of endometriosis, including the role of genetics, stem cells, and immunology in the disease. This understanding could provide new ideas for treatment options.

We currently diagnose endometriosis with laparoscopic surgery, although there is a move towards basing the diagnosis on the presence of symptoms alone. It would be great if we could make an accurate diagnosis using a simple, inexpensive, non-invasive approach such as a blood test or a test of the menstrual tissue. This would be similar to the use of stool samples to screen for colon cancer. There is currently a lot of interest in developing a diagnostic tool for endometriosis that doesn’t require surgery.

How has research contributed to our changing understanding of endometriosis?

Through research, we are realizing that endometriosis comes in many different forms and has a wider array of presentations than we previously appreciated. We have begun to understand that endometriosis is actually a systemic disease. That is, although the lesions are seen in the pelvis, there are widespread effects throughout the body including an increased risk of heart disease, depression, and some cancers. There is still more to learn but many of these associated disorders may be due to activation of the immune system.   

What types of challenges do researchers face?

One of the big challenges is how to study a disease that appears in a wide variety of ways. Some women can have a huge amount of endometriosis—lots of tissue outside of where it should be—but little pain. Other women may not appear to have much endometriosis but have severe pain and infertility.

We also have difficulty diagnosing the disease. A lot of girls have it in adolescence but don’t speak up until they are in their twenties. If you don’t know the natural course of the disease, it’s harder to understand what’s driving it, what makes it worse, or what the symptoms are.

What is awareness of endometriosis like right now?

The good news is that there’s more awareness among health care providers and women than there was just a few years ago. However, health care providers need to be more careful when taking patients’ medical histories and patients need to feel more comfortable providing open and accurate answers. Instead of saying, “I’m just fine,” women need to speak up and say, “Actually, my periods are just horrible.”

What is your hope for the future of endometriosis research?

I’d also like to see ways to prevent rather than just treat the condition so that women don’t suffer. That would be the holy grail.

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