Treatment Variability in Endometriosis

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Maria Lopes, MD, MS: Tara, let’s bring you into the fold. Do you agree with Dr Surrey? What are you seeing from an advocacy standpoint?

Tara Hilton: Absolutely. I agree with Dr Surrey. It’s tough from the advocacy side because if you polled 10 people within our community, all 10 have had very different journeys. As they said, the clinicians will monitor their age and whether they’re wanting to preserve their fertility, but the journey on our side starts as missed opportunities, maybe the onset of symptoms in high school. You may have a nurse who’s old school and has stigma, who thinks everyone has a really bad period. Every month, I used to lie in there for 2 days with a heating pad and not be able to function, and I was told I’m weaker than my peers.

Even moving into the college age, not everybody has access to REI [reproductive endocrinologist] doctors per se; you’re going to a gynecologist. There are so many variations. It could be based on your insurance. It could be based on whether you’re in a rural area. Maybe there isn’t a specialist nearby. The journey tends to be 6 to 10 years because we’ll start with our primary care doctor who will try a few things, and if those don’t work, they refer you to your gynecologist. They may try a few things. They may try a few months of birth control, then change the birth control. Then they send you over to a doctor to see if you have irritable bowel syndrome or interstitial cystitis.

You’re going through all of these stages. There may be months in between. People may pause because they’ve got to look at their financial situation and wait for the next test or pay off a bill. Before you know it, a month has turned into a few years. Some patients give up. They think, “I’m tired of all these tests. I’m not getting answers. This is just my fate. This is my story and journey,” and they deal with it. My case was exactly that. I got tired of it and thought, “This is what’s in store for me.” It wasn’t until I got married and I decided to have a child, as Dr Surrey was saying, that the real tests were done that determined I had endometriosis.

One other example I’ll give is at that one point I lived in rural Oklahoma, and the doctor who went in to help me figure out why I wasn’t able to get pregnant went in to remove a cyst, through outpatient surgery. I woke up, and all of my family was there. The doctor mistook all of my adhesions for cancer, didn’t remove the cysts, closed me back up, and referred me to get seen for cancer. It can be frustrating. Everyone has great intent, but it depends on the access and insurance you have, and then several years of misdiagnoses before you get to a solid true diagnosis of endometriosis.

Maria Lopes, MD, MS: Absolutely. Your case is unique, and perhaps not even unique for women who have suffered for many years, misdiagnosed with significant consequences as a result that perhaps could have been avoided with the appropriate diagnosis and management.

Amber, what do you see? Do you see a lot of variability depending on patients you’re seeing, how they’re presenting, and the whole resource use issue? Depending on who you’re seeing, there’s a work-up for each specialist and maybe consequences in terms of even surgical procedures, misdiagnosis, and ED [emergency department] visits. What are you seeing from your perspective?

Amber Hagen, NP: Definitely a wide variety. The patient I saw earlier had seen her primary care doctor, 2 different OB/GYNs [obstetrician-gynecologists], and she said, “I’m at my wit’s end. I’m still having painful periods. No one can help me. They’re telling me that this is how it’s supposed to be. I know I’m not crazy.” That’s how they feel they’re being looked at. They’re trying over-the-counter pain relievers, and those aren’t getting anywhere. They’re getting stuff thrown at them, and they aren’t seeing results.

There are so many forms of patients. Where my practice is, we’re pretty rural but also somewhat suburban. We’re in between, so we’re getting a lot of government insurance patients who have lack of access to the proper care. Before our practice came to Lapeer, Michigan, there were only 2 other OB/GYNs, and they’ve been practicing since before some of us were even on this earth. They’re definitely more old school with their treatments. As far as the new medications that are coming out, these GnRH [gonadotropin-releasing hormone] antagonists, they don’t even know what those are. They don’t implement those into their practice. It isn’t even in their toolbox. It’s nice for me to be able to present those options and have that shared decision-making with my patients and say, “Here’s what you have tried, and here’s what you haven’t tried. Let’s approach this from a different angle,” and see if we can get them some relief.

Transcript edited for clarity.