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Treating and Diagnosing Endometriosis: What Are the Challenges?

What are the challenges in diagnosing and treating endometriosis that a lot of researchers are still trying to grapple with? Krina Zondervan gives the answer. 

Endometriosis: Diagnosis

In terms of diagnosis, the gold standard remains being able to visualize the disease, to see the disease. That requires surgery, typically through laparoscopy, which involves an endoscope that is put inside your belly, and the clinician can have a look around and see whether you have endometriosis.

If you do, they are able to remove that disease. That's quite a skilled job, so it’s important to get someone treating you who is experienced in treating endometriosis. 

If you have a large cyst on your ovaries, or if you have a large endometriosis nodule, then that is typically picked up as well either on ultrasound or MRI. Generally, clinicians are pretty good at diagnosing that type of disease through imaging. 

But if you have a more superficial peritoneal disease, that will not be picked up through any imaging technique. You would need to have surgery for diagnosis. That is a challenge. 

Ideally, we would like to do a blood test or urine test or something like that. And that is what a lot of groups worldwide are now really trying to work on. So far, there is no test out there that is reliable.

Endometriosis: Treatment

In terms of treatment, as I’ve mentioned, a skilled surgeon should be able to at least remove some or most of the endometriosis. That does not guarantee a cure; sometimes it comes back. And that's on a case-by-case basis. 

And the other main treatment is medication — typically hormonal treatment. Hormonal treatment is not always ideal, and it is not for everyone. It does not always treat all the symptoms effectively. So usually, it is a bit of a trial and error. 

You might be prescribed oral contraceptives to see to what extent that helps reduce symptoms, or progesterone subsequently. And there are stronger hormonal medicines that really shut down the hormonal system, but typically you cannot use them for a very long time for a number of reasons. They tend to be more temporary solutions. Treatment is something that a lot of researchers and clinicians are working on to try and improve. 

Ideally, women would like something non-hormonal, but at the moment there is nothing out there on the market that does that job. 

Can endometriosis go away on its own?

Again, a really good question, and a frustrating answer is: we don't know

We do not know because the only way we can really track the disease is to do repeated surgeries to see how the disease progresses. And that is something that really you would not want to do because it is not without complications. Every time you do surgery, it may cause some damage. And you don't want to do that repeatedly just to be able to observe the disease. Women do have repeated laparoscopies, but typically that is because their symptoms return, and they need a new evaluation. 

There are older studies that look and see to what extent disease progresses based on repeated laparoscopies. And the data show this fluctuates: in some women it does not progress; for some, surgery seems to be pretty effective, and it does not return; for others, it does. 

And again, we think that this is probably due to the fact that we talk about endometriosis as one disease, but it probably is not one disease. 

It is important to stress that endometriosis is not cancer, but the way scientists now think about cancer —  cancer is no longer one disease — is perhaps how we should think about endometriosis. 

If, for example, you are diagnosed with breast cancer, typically people look at the tumor that you have, and they profile it in a certain way, and they know that if you have one profile, you would benefit from one type of treatment; if you have another profile, you would benefit from something else. And it is recognized there are different subtypes, different forms of disease. So we think that with endometriosis, this is probably the same. You might have a less progressive type, where a single surgery might cure you, or you might have a more progressive type. 

Understanding what those subtypes are is exactly what researchers are doing now. They are trying to identify these subtypes to be able to design better-targeted treatments for women.

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