What to Know About Endometriosis with Dr. Miguel Luna

Podcast Transcript

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Annie Zaleski: Hello, and thank you for joining us for this episode of the “Health Essentials Podcast.” I'm your host, Annie Zaleski, and today we're talking with Dr. Miguel Luna, Director of Endometriosis at Cleveland Clinic's OBGYN and Women's Health Institute.

Endometriosis is a health condition in which the kind of tissue commonly found in the inner lining of the uterus grows elsewhere in the body. This can include the ovaries, fallopian tubes or even the intestine. Endometriosis can cause pain and severe menstrual cramps, and complicate your chances of getting pregnant. There are treatment options available, however, that can bring relief. Dr. Luna is here to discuss endometriosis signs and symptoms, why it can be challenging to get a diagnosis, and the latest treatment options available. Dr. Luna, thank you so much for being here.

Dr. Miguel Luna: It's my pleasure. Thank you for having me.c

Annie Zaleski: So, let's start off the conversation by telling us a little bit about your work here at Cleveland Clinic. What kind of research and clinical work do you do?

Dr. Miguel Luna: I'm a minimally invasive gynecologic surgeon, which basically is a surgeon that takes care of all benign conditions, but in a minimally invasive fashion. So, complex gynecology, I focus mostly on endometriosis. That's where my clinical work and my research lies. But I also do treatment of fibroids and other benign conditions. From a research standpoint, I focus on solely endometriosis. So, what I've been working on recently, is creating a patient data registry for the patients who come, so that we can accumulate data and have enough data for future research, and move the field on in patients with endometriosis, as well as imaging in endometriosis, the uses of MRI and ultrasounds in the diagnosis of endometriosis and surgical planning.

Annie Zaleski: Wonderful. Well, let's start off by kind of a broad question then. What is endometriosis and who does this typically affect?

Dr. Miguel Luna: Endometriosis is essentially the glandular tissue inside of the uterus that is present outside of the uterus. That's kind of the lay way to say it. It's actually similar tissue, it's not the same. So, that glandular tissue that is present on the inside of the uterus that is responsive to estrogen and progesterone is present outside of the uterus where it can cause scarring and inflammation because of its growing and shedding every month. Generally affects females. About 1 in 10 women have endometriosis. Some people don't really realize this, but endometriosis can be found in males as well. Very unlikely, but it can.

Annie Zaleski: Where are some common places then that you would sort of find the tissue growing outside of where it's supposed to be?

Dr. Miguel Luna: So, the most common site is the pelvis. And it's most common site is, for example, pelvis, ovary and the posterior compartment of the pelvis, which is the area that's behind of the uterus. And that includes the pouch of Douglas, which is essentially a space between the rectum, the uterus and the vagina. It's essentially just a pouch, a blind pouch in the backside of the pelvis. And these are the areas where we most commonly find endometriosis.

Annie Zaleski: So, what are some common signs and symptoms then? I think pain is probably one of the biggest ones people see. So what are some of other common ones?

Dr. Miguel Luna: The most common of all is painful period, so dysmenorrhea. So, that's the number one alerting symptom, and it is the most common symptoms. Even throughout all studies, it is the one that is the most common. The other telltale signs are essentially, we just say it's a triad, so, painful periods, painful sex and painful defecation. All of these three together increases the likelihood of somebody having endometriosis significantly.

Annie Zaleski: What is it about then, kind of the mechanisms of the condition, that make pain so prominent as a symptom?

Dr. Miguel Luna: So, the biggest thing is the scarring. So, endometriosis, as time goes by, this glandular tissue is on a surface that does not tolerate inflammation, growth and shedding every month like the inside part of the uterus does. So, it creates scarring in the peritoneal lining, which is the lining of the inside of the pelvis and the abdomen. And it also creates tissue sticking to each other. For example, the rectum becomes adherent or stuck to the backside of the uterus because of this scarring and constant scarring. So, that is the number one driver of pain in patients.

Annie Zaleski: So, are there different signs that emerge before others? And in what age do people start to maybe sense some of these signs and some of this pain?

Dr. Miguel Luna: So, I always tell patients that the first sign is significantly painful periods. So, once patients start having periods that are significantly painful that require pain medicine, require staying home from school, staying home from work, that is the first sign that we should investigate further. There was a study that was done in adolescent women who had solely dysmenorrhea or painful periods, and approximately 70% of those patients that were investigated had endometriosis just based on painful cycles. So, that's the number one thing that we ... The number one alert sign.

Annie Zaleski: Where then do people feel pain? Is there a specific area? Is it kind of all over? Where is it?

Dr. Miguel Luna: Depending on where the endometriosis is, because their endometriosis can be in the pelvis, it can be outside of the pelvis as well. But if the endometriosis is in the pelvis, it will create pelvic pain. So, it will create pelvic pain that's associated and worsened with your cycle. And as time goes by, pelvic pain will be present even outside of your cycle. But for example, if there's an endometrioma or an endometriotic lesion of the ovary on the right side, that patient may present with greater right-sided pain. If there's a lesion of endometriosis that's on the bowel or the rectum or the sigmoid colon, the patient will present with pain with defecation, sometimes bleeding as well. So, the pain varies depending on the location and the severity of the disease.

Annie Zaleski: So, beyond pain then, are there any unexpected signs or symptoms of endometriosis that people should be aware of?

Dr. Miguel Luna: Yes. So endometriosis is associated with infertility as well. So if patients ... One of the biggest things that we talk about during our visits is that not all endometriosis patients are infertile, but a lot of endometriosis patients do have infertility. That's another sign that we look for in patients besides pain.

Annie Zaleski: Acne is something that's come up sometimes with endometriosis. Can that be a sign? Is there any sort of connection between acne and endometriosis?

Dr. Miguel Luna: It's hard to say that. There's some literature that can suggest some development of acne. But there's actually ... We haven't been able to make the connection. There are certain, for example, phenotypes of women who have a higher secretion or higher levels of estrogen in their body that can be peripherally converted to testosterone, and that can contribute to acne. But there's no direct correlation between endometriosis and acne that we know of.

Annie Zaleski: Going back to kind of pregnancy and fertility and endometriosis then, if you become pregnant and you do have endometriosis, can that cause complications during the pregnancy? And if so, in what ways?

Dr. Miguel Luna: So, this has been studied significantly. I think the most recent study was in 2020. And there is an association between patients of endometriosis and adverse obstetric outcomes. So, patients with endometriosis that become pregnant and deliver are at higher risk of having preeclampsia, gestational diabetes, pre-term birth and growth restriction as well. The thing is that we don't know, because it's confounding, because a lot of patients with endometriosis do undergo assisted reproductive technology, so in vitro fertilization and inseminations. And in and of itself, assisted reproductive technology is associated ... Pregnancies that under that are ... Let's say that again. So, pregnancies that are a result of assisted reproductive technology tend to have a higher risk of all the things that I said, preeclampsia, gestational diabetes, growth restriction, etc.

Annie Zaleski: Now this endometriosis, does that get worse over time?

Dr. Miguel Luna: So, that's a good question, and that's a question that we get asked a lot. It's hard to answer that question. There's different types of endometriosis. There's superficial endometriosis. There's deep endometriosis, which is the endometriosis that infiltrates other tissues or affects other tissues. And then there's ovarian endometriosis. That's kind of how we classify it. So, ovarian endometriosis does tend to get worse because it's a cyst and it fills up with fluid and continues to grow. The other types of endometriosis can get worse as they become resistant to medicine. For example, if patients taking birth control pills or progesterone for a very, very long time, at some point in time, these implants do become resistant and pain ensues. But we haven't been able to see endometriosis progress from a superficial to a larger lesion, etc. So we don't have that capacity as of yet to see what the actual progression of the disease when it comes to the lesions is. We believe that they're all different. So, superficial is different than the deep and the deep is different than ovarian. It's all the different disease process.

Annie Zaleski: Is there one of those specific kinds then that affects fertility? Or can infertility come from one or more of those different kinds of endometriosis then?

Dr. Miguel Luna: So, endometriosis alone is associated. The association is just by having endometriosis. So, endometriosis creates an inflammatory environment inside of the pelvis that actually translates even into the bloodstream. So, the markers have been found in the peritoneal fluid and the fluid inside of the pelvis. And also, these same inflammatory markers have been elevated in the blood. So, it's a global systemic disease. It's not just local. But it can cause adhesions, the tubal occlusions, the tubes get blocked because of the, for example, endometrioma or a lesion that's close to the tube. The ovarian tissue can get damaged or does get damaged with the growth of these endometriotic cysts. And we've also known that there's damage in our oocyte, and oocyte is your egg that's in the ovary, and the sperm, DNA damage just associated to the inflammatory environment inside of the pelvis because of endometriosis.

Annie Zaleski: So, there's a lot of effects that people might not even realize then.

Dr. Miguel Luna: Yeah. Endometriosis is a chronic disease that is inflammatory and it's estrogen dependent. So, it's something that is systemic.

Annie Zaleski: So, when you look at endometriosis, it feels like it can be very difficult to diagnose then. So why is that?

Dr. Miguel Luna: It depended on the diagnostic laparoscopy and the biopsy of tissue and sent to the pathologist to diagnose endometriosis for a very, very long time. And we think that's the reason why there's a delayed diagnosis in up to nine years in some patients.

Now, the trend, and we're moving towards evaluating patient clinically with signs and symptoms and using imaging to diagnose endometriosis. So, a patient comes to the office with dysmenorrhea, painful periods and painful intercourse, with a physical exam with a painful nodularity in the posterior aspect of the uterus, we order an MRI and we can see the lesions on the ovary and the deep lesions and the posterior aspect of the uterus. And we already know that we have a diagnosis of endometriosis. We don't need to go to the operating room. We don't need to have a portion of tissue to make that diagnosis. So, I think that the shift in the way that we are diagnosing endometriosis now will show fruits in the future where patients are getting diagnosed or becoming diagnosed sooner.

Annie Zaleski: Well, and traditionally, too, endometriosis has been mistaken for pelvic inflammatory disease or ovarian cysts, as well as irritable bowel syndrome then. What are some of the differences in all of these? And is this new way of kind of diagnosing endometriosis sort of taking some of the mistaken identity, I guess, as it were, out of this?

Dr. Miguel Luna: Yeah. There is an association of, for example, IBS or patients with Crohn's or inflammatory bowel disease as well, with endometriosis. So, I would probably put IBS in a different category. But pelvic inflammatory disease and hemorrhagic corpus luteum cyst, yes, this is something that brings patients to the emergency room very commonly. And diagnosis is hard in the emergency room because there's not always a gynecologic provider available, or the gynecologist that is on call or seeing the patient doesn't have a practice in endometriosis. So, that contributes to these disease processes being confounding.

Annie Zaleski: Why is it so important to get a diagnosis of endometriosis?

Dr. Miguel Luna: Well, it's a debilitating disease. It causes pain. It is detrimental to patients' quality of life, sexual health. If patients are in pain for a very, very long time, they have issues with fertility and conception. Quality of life scores in patients with endometriosis have been compared to patients with cancer, and they're similar. So, it's a very important diagnosis to have so treatment can improve life.

Annie Zaleski: So, with these new ways of diagnosing then, how long of a process can someone expect? And then, is there anything else you need to go through to get an official diagnosis of endometriosis?

Dr. Miguel Luna: And this is something that we talk about , in conferences and try to educate providers. So, if you come to the office, Endometriosis and Chronic Pelvic Pain Center here at Cleveland Clinic, and you have symptoms, evaluation is going to be a complete history, a physical and an imaging. Once that imaging is there, then we already know what's going on. If there's ovarian endometriosis, if there's a deep endometriosis, if there's bowel endometriosis, we'll have that diagnosis and that plan in a week's time, however long it takes to see the patient, have the imaging, and then have a discussion about the imaging.

Annie Zaleski: That's amazing. That is so much shorter than I think than people might expect, and especially from precedent.

Dr. Miguel Luna: Yeah, no, and that's also a little skewed because this is a big part of our practice. We're a big center. This is what we do here, and there's a lot of providers that just do this all the time. It's a little harder when you are in a rural part of the United States and gynecologists are not as versed in the management of endometriosis as we are. So, that's something to take into consideration as well.

Annie Zaleski: So, what does treatment for endometriosis entail? And how do doctors kind of determine the best treatment for someone?

Dr. Miguel Luna: So, the treatment is tailored towards the patient's goals. It depends on where the patient is. Is it pain relief? Is it fertility? Is it having a baby in the next year? It's very patient-centered and patient-based. But overall, we treat endometriosis in different ways. We can treat it medically or we can treat it surgically. So, the medical management of endometriosis is hormonal suppression, birth control pills, progesterone and other medicines. And surgical is excision of the lesions, so removal of the lesions.

Annie Zaleski: What other things can help with endometriosis pain? Because obviously, that's such a big thing. Would people get on medicine? Can exercise help? What are some common things that doctors are able to do to help people?

Dr. Miguel Luna: Pain is often multifactorial in patients with endometriosis, depending on where they are in their journey with the diagnosis. They could already have a diagnosis of chronic pelvic pain. But there is good data to show that keeping a healthy lifestyle, exercising regularly, yoga for the pelvic floor, relaxation techniques, all of these things are helpful. They're not curative. And of course we are not going to just tell patients just to do that. But it's healthy. It's healthy and it's actually helpful for the patients. So, from a lifestyle standpoint, diet can vary in different patients. But some patients find that a vegan diet is better. Some patients are on Keto diet and feel much better. It's very variable. And there's actually no data for us to actually steer the patients into one specific lifestyle or the other.

Annie Zaleski: That's really good to know, then, because I think there is a lot of conflicting information out there, and what one person says works might not work for someone. That can get really frustrating.

Dr. Miguel Luna: Yeah. So like I said, it's all patient-centered. If a patient's trying acupuncture and is going to yoga and it's working for her, then please go ahead. If pelvic floor physical therapy, other types of physical therapy, meditation techniques, all these other things, whatever's working to make the patient feel better is something that we encourage.

Annie Zaleski: Can endometriosis get cured with treatment then?

Dr. Miguel Luna: That is also a very good question. It's a very hard question to answer. Because honestly, I don't like to say that any treatment of endometriosis is curative. So, once you have a diagnosis of endometriosis, it's there and it's going to be there because it's a chronic disease that is dependent on a hormone that women secrete from their whole life up to menopause, where it stops. Or it doesn't stop, the amount of estrogen secreted decreases. So, I have a hard time saying that we can cure people with endometriosis. It's something that you live with for your whole life.

Annie Zaleski: I think that's good because that helps manage expectations, too, and tells people, "Hey, we can work on treating things and make your symptoms more manageable and help you achieve the goals you want to achieve."

Dr. Miguel Luna: Yeah. We can definitely ... We have patients that are symptom-free after surgery for 10 years, 15 years. And that's the goal. It's just that we don't know what happens in the next 10 or 15 after that.

Annie Zaleski: So, if someone suspects they have endometriosis then, what are some good questions to ask their doctor or good things to bring to an appointment to kind of report to them?

Dr. Miguel Luna: So, all of the symptoms is one of the things that I encourage. So, if you're having painful periods, describe how these periods are painful. Any association of other pains that you feel. For example, if you have painful urination or painful bowel movements during menstrual cycle, these kind of need to be described as well. Is there any blood in your urine or blood in your stool? All of these things. Having a good symptom log is very, very important. And then also letting the provider know that you want to know whether you have endometriosis or not. So, being very, very clear and blunt about that as well.

Annie Zaleski: And I think that's very good because a lot of times you hear stories that sometimes people have trouble getting their pain taken seriously. And so you need to be blunt to say, "Hey, I suspect I have this. This is what I'm doing. Take me seriously."

Dr. Miguel Luna: Yeah. And I think honestly the biggest push in the treatment or in kind of the access for endometriosis has grown because patients themselves have become advocates for themselves. So, there's multiple advocacy groups online that are huge, massive. And they educate patients, and it's a great community. So, I think that being an advocate, having people that are around you that have gone through the same thing is also helpful.

Annie Zaleski: And that's also kind of breaking down the stigma or the embarrassment of saying, "Hey, I have these things going on," and it's really kind of getting it more out into the open as well.

Dr. Miguel Luna: Yeah. Yeah. It's always refreshing to see patients ... Some patients do share with us what they share online about their experiences. And it always puts a smile on my face to see how many patients have come together and actually have made each other better just by telling each other what's going on, what's correct, what's not correct, where to look for doctors that know how to treat it, etc., etc. So, it's impressive.

Annie Zaleski: And support systems are so great for anyone going through something. That's really cool.

Dr. Miguel Luna: Yeah.

Annie Zaleski: Well, are there any questions that you tend to hear from people that maybe we haven't covered about endometriosis that you think might be important to mention, or that people have found helpful that you've told them?

Dr. Miguel Luna: I think the biggest question is, that comes up a lot is, do you have to have a hysterectomy in order to cure or to improve endometriosis symptoms? And I always say that it depends on where you are in life and of course, what age and have you completed childbearing. Is this something that's still important to you? So, just to be clear, the hysterectomy alone itself, without any excision of endometriosis, is not a cure. It doesn't make it better. You don't have to have your ovaries removed at a young age because of endometriosis. You can also have hormonal treatments even after having a hysterectomy. It's just important to not box in on a specific treatment that's definitive or not definitive. It's very important for me to say that every single patient needs to be treated differently and individually based on their goals and their disease process.

Annie Zaleski: And going through something that's so painful and so challenging as endometriosis, it's almost good to know to say, "Hey, we're going to look at what's going on with you. There's no blanket treatment, but we're going to make sure that we do what's right for you in your situation.” That's also really kind of a relief, too.

Dr. Miguel Luna: Yeah, exactly.

Annie Zaleski: Thank you so much for being here today. This has been really interesting, Dr. Luna.

Dr. Miguel Luna: It's my pleasure.

Annie Zaleski: If you're experiencing signs of endometriosis, your doctor can help you figure out the best next steps. Visit www.clevelandclinic.org/womenshealth, or call the Women's Health Institute at 216.444.6601 for an appointment.

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