Endometriosis affects millions, but can take years to diagnose. Here’s what to know

Ali Rogin:

One in 10 women of reproductive age around the world suffer from a condition known as endometriosis. It's an illness where tissue similar to the uterine lining grows outside of that organ in places it's not supposed to be. It can lead to infertility, debilitating pain and financial hardship. For our series Unequal Treatment, I recently spoke with Dr. Laura Homewood, a gynecologic surgeon at UVA Health, about how the medical community is working with patients to learn more about this disease.

Dr. Homewood, thank you so much for joining us. We mentioned that it sometimes takes years to get a diagnosis. What is the average patient's time to get a diagnosis and why does it take so long?

Dr. Laura Homewood, Gynecologist Surgeon, UVA Health:

The famous statistic around endometriosis is that it can take an average of seven years and seen seven different doctors before a woman can get her definitive diagnosis of endometriosis. Despite it being a very common diagnosis, it's difficult to diagnose because you have to actually have surgery to get a tissue diagnosis.

And so there's no easy blood test, there's no easy screening imaging that may be able to be found in other diseases. But also some providers aren't good at catching it. They're very vague symptoms that can mimic other diseases and that can lead to big delays for women unfortunately.

Ali Rogin:

we spoke to one patient advocate who said she went nearly a decade before she was diagnosed and experienced tremendous uncertainty, high medical bills in the interim. Let's take a listen to what she had to say.

Melissa Bourdreau, Endometriosis Patient and Advocate: I was very young when I first started going through this, in my young 20s and I didn't have a lot of extra money. And then as time even went on, some of the surgeries were not covered by my insurance, so I had to pay out of pocket to have surgery. Endometriosis has a huge financial burden and impact on the individual who's suffering and their families.

Ali Rogin:

Do you see a lot of patients with stories like hers?

Laura Homewood:

Absolutely. I hear this type of story almost daily in my clinic. Endometriosis has a lot of impacts on a patient's life and you have to consider all the different costs that are going on. Not only is there the financial cost to the patient in the co pays in the medication costs in surgery and all of those personal out of pocket costs, there's also a huge cost to the health system in the increased utilization by these patients.

Like I mentioned, these patients will see multiple doctors before they're able to get their diagnosis. And that really adds up over time. There's some data that we have that suggests that a typical woman will spend about 4 to $5,000 between their out of pocket costs and insurance coverage in a single year. However, a patient with endometriosis, they're looking at about $14,000 per year.

So, there's a lot of costs financially. You also have to think about the opportunity cost of having this disease. So that's the loss of the potential gain. While these patients are, let's say, bedridden, in pain for a couple days each month during their menses, they, you know, miss work, have to call out, maybe they're not being promoted at the same scale as other patients who don't have to miss work.

Ali Rogin:

There's also been issues with fertility. Can you tell us about those as well?

Laura Homewood:

Unfortunately, there's an association between infertility and endometriosis. And so if you're not able to get pregnant naturally, oftentimes these women have to seek the assistance of infertility specialists and assisted reproductive technologies. For example, in vitro fertilization, a general cycle of that can cost anywhere from 15 to $25,000 out of pocket if your insurance isn't covering it.

Ali Rogin:

What needs to change in terms of how experts, how doctors, how researchers think about and treat this disease?

Laura Homewood:

Well, like I mentioned earlier, there's no great way to easily diagnose this disease. And so I think there needs to be a lot more research in the field of endometriosis to get a noninvasive diagnostic test. The other thing is patient awareness. Some women don't know that it's not normal to have such painful periods or it's not normal to miss school and have to miss work because of the painful periods.

Ali Rogin:

And certainly, I'm sure part of this is doctors needing to be more inclined to listen to their patients when they bring up severe period pain.

Laura Homewood:

I hear that all the time that patients say, oh, my doctor just said, oh, it's just your period, take some ibuprofen. When in fact it's so much more than that and much more complicated. I think it's difficult for doctors to have a very intense and, you know, long conversation about chronic pain in a 10 or 15-minute video slot with their patient. You need time and effort to really get to the bottom of the problem. And I think some providers just don't have that time or that expertise to.

Ali Rogin:

I want to be sure to ask you also what sort of treatments are available for this?

Laura Homewood:

So there are a lot of different treatments as simple as birth control pills, different types of birth control that exist, that manipulate the hormones in your body so that your endogenous or the hormones that your body naturally makes aren't stimulating the endometriosis. We're actually trying to suppress it like hormones.

There are a few new medications that are on the market that help with pain associated with endometriosis. However, they're extremely expensive. In addition to medications and hormones, we also have surgery as a management option. So not only is surgery diagnostic, but if you have surgery with a surgeon trained to excise that endometriosis or to remove it at the time of surgery, if also therapeutics.

Ali Rogin:

Dr. Laura Homewood, Gynecologic surgeon at UVA Health, thank you so much for your insights.

Laura Homewood:

Thank you.