Maria Lopes, MD, MS, leads a panel of experts in a discussion surrounding clinical and patient burden associated with endometriosis.
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Maria Lopes, MD, MS: Hello, and welcome to this AJMC® program, “Rethinking Quality Care in Endometriosis.” I’m Dr Maria Lopes. I’m an OB/GYN [obstetrician-gynecologist] and have been in the role of a payer for the past 23 years with multiple organizations, including Horizon Blue Cross Blue Shield of New Jersey, EmblemHealth, Magellan Rx, and now with an integrated system. Joining me in this discussion are my colleagues, Dr Eric Surrey, an OB/GYN, reproductive endocrinologist, and infertility specialist with Colorado Center for Reproductive Medicine; Amber Hagen, a women’s health nurse practitioner in private practice; and Tara Hilton, founder of Yellow Cape, an endometriosis advocacy organization.
Our panel of experts will provide an overview of the burden of endometriosis, review available treatment options, and discuss a personalized treatment approach to improving patient care. Thank you for joining us. Let’s begin. Dr Surrey, can you please discuss the pathophysiology of endometriosis?
Eric Surrey, MD: I could spend the next 6 hours doing that. Because I like everybody who’s watching this program, I’m going to narrow it to a simple summary. We know that endometriosis is basically endometriotic cells, or uterine cells—both glands and stroma—outside the uterus. It’s most classically in the pelvis, but it can be anywhere in the body. Interestingly, there have even been cases of endometriosis in the lung and in the retina, although that’s very rare. The most common place is the pelvis.
What causes it is a tough decision. There are several theories out there. The classic theory from the 1920s from Dr John Sampson was that this was reflux of glandular or endometrial cells through the tubes that would implant in the belly. That clearly wouldn’t explain disease outside of the pelvis. It’s unlikely that there’s a miraculous transformation of normal cells into uterine cells elsewhere in the body. It makes no sense that that would be the case.
We know that there’s something very different about the immune system in the belly, or the peritoneal cavity, of women with endometriosis, because every woman with open tubes will have this tissue go back through the tubes during menses, but not every woman has endometriosis. This is a chronic, systemic, inflammatory disease, and there are lots of studies that have shown different growth factors and inflammatory factors inside the belly of these folks that allow this tissue to implant and proliferate. That’s a real CliffsNotes version.
Maria Lopes, MD, MS: Thank you. That’s very succinct. Amber, in your experience in your practice, how common is endometriosis? What’s the percentage of female patients of reproductive age who you believe may have endometriosis? Because as Dr Surrey just outlined, it could be a lot more common than what we think.
Amber Hagen, NP: Exactly. It’s way more prominent than we see. A lot of women don’t know they have it. They assume their menstrual periods and intercourse are supposed to be painful. That’s what they’re told. A lot of women aren’t coming to even evaluate this or know that these symptoms are abnormal. It’s way more prevalent than we know. As most research is showing, about 10% of the population has endometriosis, but that’s just the number that we know. There are many women who assume this is normal and aren’t coming forth, and we aren’t seeing those women to even begin to evaluate them and their symptoms.
In my practice, I’m probably seeing a little less than 10%. I had a patient today who said, “I’ve seen multiple OB/GYNs, and they’ve all told me that my periods are painful, and that it’s normal and to basically suck it up.” We’re now digging further to see if that’s actually what she has, because she definitely meets those clinical symptoms for the presentation.
Maria Lopes, MD, MS: Yes. It’s also interesting that even of women who have symptoms, they may not know what they have. There are probably many others who don’t even have symptoms who may be walking around and, at some point, Dr Surrey may see some of those if they have infertility. They may have spent months, years, or decades without realizing that they have a condition. Let’s bring Tara into the discussion as well. Tara, what’s the patient burden like for a woman with endometriosis?
Tara Hilton: I always classify the burden in 3 categories. You have the physical burden where you’ve got the pain. You aren’t able to do the things that you want to do, and you’re missing out on things in life. That leads to an emotional burden where you’re feeling a lot of guilt. You feel guilty for missing big events. You feel guilty for not being the friend, the mom, the daughter, the wife that you should be. You feel guilt for always having something wrong. You feel guilt for a lot of things.
One of the major ones, the third category, is financial burden. You’re going to all these different doctors trying to figure out what’s wrong with you. Co-pays, specialists, and medical tests add up, so this financial burden then revictimizes you because the guilt is there. These medical bills may be keeping you and your family from achieving other goals, traveling, and other things. Between the physical, emotional, and financial burden, it’s a lot. It can leave you in a place where you feel alone.
Maria Lopes, MD, MS: Absolutely. And for employers, this may have some ramifications even on the productivity side.
Tara Hilton: Absolutely. It impacts your career.
Transcript edited for clarity.