Humanistic Burden and Risk Factors for Endometriosis

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Maria Lopes, MD, MS: Amber, in your experience, what’s the type of pain that women are experiencing? When does this typically occur?

Amber Hagen, NP: Women present with a variety of pain symptoms. Some women have pain with their periods and minimal cramping here and there, and maybe don’t realize until later down the road. There are women trying to get pregnant who are dealing with infertility and come to find out there’s endometriosis. On the other end of that spectrum, we have women who have pain almost every day, even unrelated to their menstrual cycles. They can’t get out of bed. They’re missing work and school. Even young teenagers are missing class, missing school, and then college. Then into their careers, they’re missing work because of the intense pain that they’re dealing with. Other women can have pain with intercourse. There’s pain with bowel movements or exercise. It varies in intensity. Some days it’s OK. Some days it’s unbearable and they aren’t getting out of bed, or they take some Motrin and are good to go. There’s a big spectrum of presentation for pain.

Maria Lopes, MD, MS: Absolutely. Dr Surrey, can you comment on this as well? The type of patient you see may be quite similar. Can you comment on the burden of the patient and a little of the patient journey? Because by the time they see you, they may have had endometriosis for a very long time with damage already done.

Eric Surrey, MD: That’s a great comment. There’s a great quote from one of the pioneers in this field, Dan Martin, [MD,] who had been a member of the faculty at the University of Tennessee. He said, “There’s almost no abdominal symptom that’s never endometriosis, and there’s almost no symptom that’s always endometriosis.” There’s a lot of cross-reactivity with other disorders in their system, such as cystitis or irritable bowel syndrome.

By just talking with a patient, I don’t think you can ever say, “I guarantee you have this disease.” It’s a risk factor; you’re more likely to have endometriosis. As clinicians, we need to use the most important instrument we have, our ear, to listen to that patient—which doctors aren’t that great at doing—to make sure that we aren’t ignoring something that, as Amber very accurately said, they may think is normal for them because they’ve always experienced it, but isn’t [normal].

How patients present varies a little. You get the variety of folks who come in for an annual exam, and it’s only when they’re queried that this history is teased out, and you realize there’s a problem. There’s the second group that come in with various pain symptoms that need to be attended to immediately. Then there’s the third group, which I see a lot of, which are fertility patients who may not have a lot of pain. It’s classic to see women who are around 29 years old who have been on birth control and come off the pill because they want to get pregnant. They’ve had no pain, but suddenly, their periods are getting more uncomfortable. They also aren’t getting pregnant. Maybe they can’t get pregnant because it hurts so much to have intercourse. This goes together.

Every woman’s journey is different. There isn’t the endometriosis journey. People who try to put this in a box are making a huge mistake because we’re all individuals, every disease is different, and this is a disease. There are data out there showing that the average woman is at least 5 years from the onset of symptoms before a diagnosis is made. That’s unfortunate for all of the reasons that Amber and Tara have already discussed. It’s a 2-way street. It isn’t that all these clinicians are incompetent. You have to tease it out. Someone has to be comfortable talking about pelvic pain and their menses, which they may not be comfortable doing. Shortening that pathway is critical, along with maintaining compliance, making the patient pain-free and happy, and hopefully pregnant if that’s their desire.

Maria Lopes, MD, MS: Yes. Those are very good points. Putting the payer hat on, in terms of that journey, we pay claims, so there’s utilization that occurs. Because they may have GI [gastrointestinal] issues, and if they’re seeing a gastroenterologist, they’ll have a work-up. If they have back pain, they may get MRIs. They can present to the ED [emergency department]. Quite often, they may be on opioids. Some may even end up with hysterectomy. As a payer, we’re paying for a lot of resource use in that journey that sometimes is difficult to pinpoint until you have a diagnosis. Wonderful points, Dr Surrey, Tara, and Amber. It’s a challenging diagnosis to make by far. Dr Surrey, what are some of the risk factors that contribute to this condition?

Eric Surrey, MD: There isn’t a standard. What’s fascinating though is there has been a lot of work that’s been done primarily in England on a genetic basis for endometriosis. There may be some markers. We don’t have that today, but there’s linkage. We see women whose moms had endometriosis. If you go back with this diagnosis, laparoscopy didn’t become popular until the late 1970s and early 1980s. If you think about your grandmother, who may have gotten pregnant when she was 19 for the first time, which would be standard, the only way to diagnose pelvic pain was to do a laparotomy. A woman had to think about that before having a major surgery. There may be a much more genetic link than we think.

There’s some interesting information about environmental factors as well. There are other things. Early menarche, or starting periods earlier in life, can have an impact. More frequent periods can be a factor, girls who have periods every 20 or 21 days. It makes some sense if you think about retrograde menstruation, a greater tumor burden, so to speak, as well. Infertility is perhaps a risk factor, but it may go both ways. Delayed pregnancy can be a risk factor as well, but there isn’t one clear factor that you can safely pinpoint. It gets a bit into the diagnostic part and the treatment part when you have younger women who have pelvic pain and fail to respond to oral contraceptives. They have a very high incidence of endometriosis.

Transcript edited for clarity.