The Impact of Endometriosis on Daily Life

In part 1 of this 2-part episode, Nisha McKenzie, speaks about the different types and stages of endometriosis, the disruptions to daily life caused by endometriosis, and what health care providers need to know about managing patients with endometriosis. 

For more information on endometriosis, visit the Resource Center. 

Listen to part 2 of this episode here. 

Nisha McKenzie, PA-C, is the owner and founder of Women's+ Health Collective, a certified sex counselor, and a nationally certified menopause practitioner (Grand Rapids, Michigan). 

TRANSCRIPTION:

Jessica: Hello, everyone, and welcome to another installment of Podcast360, your go-to resource for medical news and clinical updates. I'm your host, Jessica Bard with Consultant360 Specialty Network. Endometriosis is most common among women aged 30 to 49 years, according to the US Department of Health and Human Services. Nisha McKenzie is here to speak with us today about endometriosis. She's a physician assistant, certified sex counselor, and nationally certified menopause practitioner. She's also the founder and the owner of Women's+ Health Collective in Grand Rapids, Michigan. Thank you for joining us today. What is endometriosis?

Nisha: Great question. So endometriosis is, I would say, first off, deeply misunderstood as well as underdiagnosed, but it is a chronic pain condition, mainly of the pelvis, that affects women. Generally, about 1 in 10 women globally will be affected by endometriosis and the pain can be quite debilitating, so these people will often have excessive pelvic pain, excessive bleeding, and uterine bleeding that might just be heavier during their monthly bleeds, but it might be heavier also, you might have bleeding throughout the month. They can have pelvic pain that's worse during their bleeds as well as throughout the month. They can have pain with penetration or any kind of sexual activity, even if there's no penetration. If there's an orgasm and contraction of the pelvic floor, that can cause some additional pain. Sometimes they'll have pain with bowel movements, so it's a pain and a bleeding condition, really.

Jessica: What are the different types of endometriosis?

Nisha: There's endometriosis that we can see surgically that's called superficial peritoneal endometriosis, so it's in the abdominal cavity. When we go in with a laparoscopy and a camera and take basically, the surgeon's eyes put them in someone's abdomens, so to speak, and look around, we can see these atypical spots or lesions or tissue collections. And they're similar to the lining of the inside of the uterus, which is called the endometrium, but they're not necessarily exactly the same cells. There have been multiple different theories over time about how those cells get there or how they get out there. And one of the leading theories for a long time, and it's been largely debunked now, but it's still taught as one of the leading theories is that there's this retrograde menstruation or retrograde flow. So when you have a period and the blood comes out the vagina, that there's also this backward flow out the fallopian tubes back into the abdominal cavity and then those cells or that tissue stays in the abdominal cavity.

And while maybe 90% of people will have retrograde flow, not all those people, most of those people don't have endometriosis, so that's one of the more simple ways that's been debunked. Most often, the leading theory now is more this is something that people develop maybe embryologically, so they were born with, for example. And then due to multiple different environmental and genetic factors, these things got turned on and they started displaying symptoms and proliferating and growing and causing pain and causing bleeding. Sometimes it's before periods even start, that some of these symptoms will begin. I would say 25 to 35 is probably one of the bigger rates that we'll see some of this show up in our clinics, but it can still happen post-menopausally, as well.

Jessica: Now, I understand there are some other impacts of endometriosis. Let's get into some of that, some social impacts, things that people might not think of. Talk to me about some of those.

Nisha: Yeah. Gosh. It would almost be easier to talk about what it doesn't impact. So endometriosis, because it's a pain condition, because it's a bleeding condition, and because it's not believed enough, these people do generally spend on average 10 years before they receive a diagnosis of endometriosis. So, a decade of bringing concerns and questions and issues to their medical provider that it's brushed off like, "Oh, you're just having periods. Oh, they suck, so this is how we live. Maybe try this birth control pill or something," so 10 years before they get diagnosed. The impact can be economic. These people, they might have to run out of a meeting, a big board meeting because they just gushed through their underwear, their liner, their tampon, their period underwear, whatever they're using.

The loss of hours ... I think one of the more recent studies show that there's somewhere between a loss of 5 to 6, either work hours or hours at home, so someone who's not in a workplace setting where they're getting paid. 5 to 6 hours per week that is lost on average of productivity. And the financial burden of what's lost based on inability to function, some of these people can't even get vertical because the pain is severe during the time that it's really flared up, certain times of the month, perhaps. Then sexually, if these people are sexually active, which I would say most humans on the planet are at some point either with themselves or with partner or partners because there's so much pain, they're unable to become sexually active, even without penetration, sometimes. Like I said earlier, even external stimulation can cause contractions of the pelvic floor and there can be so many additional spasms and pain in the pelvic floor due to having been in pain for so long that contraction is very painful.

So lost relationships, lost jobs, lost productivity, lost self-esteem, lost sense of confidence, all of those things can be negatively affected with endometriosis, especially when these people might go in and time after time be told it's normal. And when they hear it's normal and they realize that it's affecting them more than it might affect their friend, for example, then they start to feel crazy. They feel like, "What's wrong with me? Why am I feeling like this isn't normal? Why can't I tolerate this when everybody else can?" And that's just very defeating, so low levels of subjective wellbeing are prevalent with endometriosis. And that's a place that I think that we just need more research and more understanding so that we can understand how this is affecting people.

Jessica: Yeah. What can be done about this? What is one thing that you really think that clinicians should know when speaking to their patients when managing patients with endometriosis?

Nisha: That's a great question. I think one of the things that I would say most is we tend to work from a clinical standpoint in a black and white, "Is there greater than 80 milliliters of blood loss during this bleed cycle?" or something like that. And one of the things that I think would be really more helpful is if we just ask the patient, "Is this impacting your life negatively?" And frankly, by the time they come in to see you, that means it's impacted their lives negatively. And they probably suffered for who knows how long before they came in, because they already thought, "I just got to buck up and get through this. Everybody has period pain," so who knows how long they suffered before they came in to see you? So by the time they come tell you, "Something feels like it's not right. I can't function this many days of the month. I can't maintain a relationship because I can't be sexual in this relationship ..." I think just believing our patients and saying, "Okay, I don't need to prove that you're losing, again, 80 milliliters of blood or something like that each time." I can say, "Okay. Give me a little bit of context here. Let's see what's going on." And then just offer options.

Endometriosis, one of the really tough things, I think, about it is that the gold standard for diagnosis is surgery. In a sense, it's not normal tissue, but it's almost like normal tissue, just in an abnormal spot. It's called ectopic tissue, so it just grows in an abnormal spot. So in a way, it's like taking the tissue from the inside of your cheek and putting it on the outside of your cheek. And then if you took x-rays or ultrasounds or mammograms, don't take a mammogram of your cheek, MRIs, anything like that, you're not going to see it. It's going to shoot right through because it's normal tissue, but the naked eye can see it. You can see it and go, "That's not in the right spot. That doesn't look right there." So in order to diagnose this definitively at this point, we need laparoscopic surgery. We need to go in and find those abnormal-looking areas, take a biopsy of it, make sure it's a good biopsy, enough tissue so that the pathologist who's skilled in reading this type of biopsy can say, "Yes, that looks like the endometrial-like tissue of endometriosis."

And because not everybody who has pelvic pain and or heavy bleeding needs surgery, it tends to be a diagnosis that we can make clinically, but we don't necessarily always have that cold, hard data to say, "Yep, you got it. It's endometriosis." But regardless, the treatment's the same. We try to control their symptoms and we offer all the things that we can offer that are suitable for that patient. Talk about risks and benefits and see if we can help control their symptoms. And if we can't, because either the endometriosis is so severe or they're unable to tolerate the treatments, then we go to surgery. But we tend to be black and white in this world in general and certainly in medicine because a lot of that is black and white. Science's pretty black and white and so when we don't have that black and white evidence in front of us, "Look, this is endometrial tissue or endometrial-like tissue," then we have a little bit of a harder time believing it.

Jessica: Is there anything else that you'd like to add today?

Nisha: Oh, what else would I not like to add? There are so many things about endometriosis. I really just think that the stigma, the stigma that's associated with anybody complaining of pain in any office, any gender, any sexuality, that might go in and say, "I have pain," there's so much stigma to pain because it's not quantifiable. We can use pain scales and say, "On your scale of 1 to 10, 10's I chop off your leg, what kind of pain are you in?" but that's still subjective. That's still their perspective of what their pain is. And everybody does have different pain tolerances. Everybody's got different nerve endings running to their pelvis or wherever endometriosis might be growing.

And so really, I think just the most important part is to start talking to our patients and listening to them and understanding how it's affecting their life, what the impact is, I think, is one of the biggest challenges. If we can understand the impact for patients, we can start treating them a little bit, hopefully, more comprehensively as well as sooner. If we can treat them sooner, we can help preserve fertility, help preserve the option to carry a pregnancy if that person were to want to down the road because we have addressed these lesions or these endometrial-like tissues or cells early enough that it's not going to cause problems with infertility later. But if we wait too long, then sometimes it's more difficult to do those things.

So just listening and understanding that patients have different ... Everybody's coming from a different scope and they're seeing things from a different lens. And so if it's affecting them, we might in our head be going, "I don't know that would affect me." That's not important. Our goal really should be, "Let's understand how it's affecting our patients and see if we can help them at this moment."

Jessica:

Well, thank you so much for joining us on the podcast today, and thank you for all the work that you're doing in women's health.

Nisha: Thank you for having me. I appreciate it.