VIDEO: Awareness of endometriosis begins with clinician patient, education

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That’s a million-dollar question. So, I see patients in 2023, who tell me, and I think it’s important to listen to other patients always. They tell me that they’ve seen multiple providers for several years and are not diagnosed with endometriosis. So, I don’t know the reason for that. I feel like, is it because the providers are not used to thinking about endometriosis or is there a cultural mindset that it’s normal to have discomfort with a menstrual cycle? And are we out of sync with what the severity of the symptoms should be? So, to answer your question, I think education on both ends is really important. As part of the Boston Center for Endometriosis, that has been part of the mission, where educating clinicians and clinical support staff as to recognize the disease, to recognize symptoms that are out of proportion, and when to say, “Well, maybe you have endometriosis.” There is a link in families, there’s a hereditary component. We don’t know which gene it is. So, if someone shows up and their aunt or their mom or their sister or a cousin had endometriosis, then it should be high on our radar when we talk to patients. If the patients come in and say, “Yes, I have uncomfortable menstrual cycles.” I think it’s important to dig a little bit more and ask, “Well, can you describe that to me?” Because I find a lot of these patients who come and talk to me, when you really get down to it, they tell me that they actually skip work and school and are vomiting and laid up in bed with severe abdominal pain. Some have burns in their abdomen from using heating pads.

So that is not normal. And that’s something that has to be recognized. And for the patients too, I think it’s important to recognize that. because certain, a lot of patients tell me in their family, no one talks about their menstrual cycles. And so, when they get cramping and they talk to an older person in the family, they say, “Well, that’s just the way it is.” But that may not be the way it is. And if it’s severe, that is definitely not the way it should be. And so, I think education on both ends is important. It’s important for patients to be validated that these symptoms are caused by a disease. I’ve actually had patients wake up in the operating room and ask me, “Doc, do I have endometriosis?” And they’re delighted when I say “yes,” because they felt like they’ve been dismissed for many years and they, and that their symptoms were not real. So, they actually, not that they want the disease, I think they feel validated there’s a reason for it. And likewise, I think providers need to be alerted to the fact that yes, this could be an endometriosis situation, and if you’re not comfortable caring for this, that’s quite OK, refer to somebody who is. Now, in all fairness for providers, many of the symptoms of endometriosis as I mentioned earlier, it’s a great masquerader. So, you know, appendicitis may be appendicitis, or it could be a symptom of endometriosis. So, it’s hard sometimes to pick up on this, but I think we should be doing better. And I think some of the commercials that have been coming up for new medications are really helping with this. Because I’ve had patients call up and say, “I saw this on TV, I wonder if this is what I have.” And since we’re a referral center, you know, unfortunately most of the people that I operate on do have endometriosis.