Melanie Cole, MS (Host): Welcome to UF Health MedEd Cast with UF Health Shands Hospital. I'm Melanie Cole. And today, we're highlighting the UF Health Endometriosis Center of Excellence. Joining me is Dr. Nash Moawad, he is a Professor and Chief in the Division of Minimally invasive Gynecologic Surgery, the Director of the UF Health Centers of Excellence in Minimally Invasive Gynecologic Surgery and Complex Endometriosis Care in the Department of Obstetrics and Gynecology at the University of Florida College of Medicine at Gainesville; and Dr. Amira Quevedo, she's a minimally invasive gynecologic surgeon and an Assistant Professor in the Department of OB-GYN at the University of Florida College of Medicine.

Doctors, thank you so much for joining us. And Dr. Moawad, I'd like to start with you, as we think about endometriosis today, how do you frame it? Give us a little bit of a background, an overview, a table setting, if you will, as a gynecologic condition, a systemic inflammatory disease or something broader.

Dr. Nash Moawad: Well, first of all, thank you for having me, Melanie. This is a great time to focus on endometriosis as it's a common disease that's commonly missed or misdiagnosed, leading to delays of up to 10 years in a lot of women that keeps suffering with pain for many, many years and seeing multiple physicians and providers, from pediatrician to primary care providers, to gynecologists, to ER physicians, and so forth, even GI doctors and general surgeons. And ultimately, it takes that long to get a diagnosis.

It's a chronic systemic inflammatory condition that, even though it does start in the pelvis, it can affect the entire body. It can affect the entire individual and the way she functions and carries on her daily life. Pain is a highlight of this condition. It typically starts with pain with menstrual cycle, sometimes it can start before the menstrual cycle and extend beyond the menstrual cycle. Sometimes pain will affect other activities such as physical activities, pain with sexual activities, pain with bowel movements, pain with urination. And some of those women can suffer with difficulty conceiving or achieving a pregnancy. Those are some of the common conditions that lead us to suspect endometriosis is at play.

Melanie Cole, MS: Well, thank you so much. And Dr. Moawad, I'd like to stick with you for a minute. Can you tell us a little bit about building a center of excellence in endometriosis care. What's involved in doing this? And what are your visions? And we're going to get to visions near the end as well, but I'd like you to speak about what's involved, what defines experienced care in endometriosis.

Dr. Nash Moawad: First, the purpose of having a center of excellence really is making it easier for patients to know where to go and making it easier for physicians and providers to know where to refer the patients in whom they suspect endometriosis. So, this is the highlight. This is the main purpose of having a center of excellence, is to provide a place, a location that's easily identifiable for women and families and providers to know where to go to.

What that entails specifically is a group of physicians and group of providers that are highly skilled in addressing endometriosis, diagnosing it first, and addressing it with multiple medical and surgical options, a multidisciplinary team. So, it starts with taking a good history, doing a good exam, specialized GYN ultrasound, and sometimes additional imaging studies like MRI and the discussion of multiple treatment options depending on the patient's symptoms and her goals. So if that's a patient who is suffering with pain, there are options for this. If that's a patient with a big ovarian cyst, for example, there's treatment for this. If that's a patient who's trying to conceive, then the strategy can vary a little bit.

So typically, that multidisciplinary team will start with a minimally invasive GYN surgeon with expertise in diagnosing and treating endometriosis with a specialized ultrasound unit that has the surgery in mind, has the disease in mind, and know where to look and what to look for. Frequently, those women will come to us with a normal ultrasound because most pelvic ultrasounds, they just look at the uterus and the ovaries and everything looks fine. And then, the patient keeps getting moved on, hearing that everything's fine, "We don't know what's causing your pain." So, that's a big problem, relying a hundred percent on ultrasounds that are poorly performed, and not knowing what to look for. So, a specialized ultrasound is very important. And like I said, MRI is also a modality we use frequently when we suspect involvement of other organs for mapping of the disease and surgical planning, Those patients do also need sometimes other physicians from other specialties such as colorectal surgeons, if there's bowel involvement; urologists, if there is a bladder or urethral involvement, obstruction where some reconstruction is needed. Pelvic floor physical therapy is a big component of a center of excellence. Many of those patients as a result of suffering for many years and having pain, they end up having muscle problems, spasm of the muscles and inflammation of the muscles causing muscle pain as a result. And that's in the pelvic floor and it's pretty hard to consider it's different from your shoulder and neck muscles that are easy to tell, "Okay? Those are hurting. So, I need attention." The pelvic floor muscles, it's hard for patients and for primary care providers to identify that this is a problem.

Other important components of a center of excellence are pain psychology. As we know, pain cannot be treated in isolation. A lot of those patients have been suffering with pain for many years. And that can be a factor in either affecting their mental health or the pain perception itself. And the coping mechanisms can be impacted by mental health issues. So, it's important to address that part. Sadly, common problem is history of sexual abuse, and that can lead to a lot of either myofascial components or muscle component and a mental health component that does need to be addressed along with the endometriosis and the pelvic vein itself. So when you think of a center of excellence, you need to have all those components in play.

The part that is sort of at the center of all this is a surgeon who's able to diagnose endometriosis and treat complex disease, because you wouldn't want to do a diagnostic laparoscopy, find endometriosis, and then not treat it, or treat just the tip of the iceberg, or do some brief ablation or burning of the lesions. And when that happens, then you're leaving all the lesions on the vital structures like the bowel, the bladder, the ureters, the tubes, those are untouched and the patient continues to suffer and gets another surgery and another surgery. It's not uncommon for us to see patients in their teens and 20s who have lost an ovary because they had surgery as an emergency or by a physician who's not trained to handle endometriosis.

So for us, our mindset is always conservative surgery. So, we want to save the organs, spare the organs. A lot of those women are young and want to have children. So, uterine preservation and ovarian preservation and tubal preservation are prime goals for us when we do surgery.

Melanie Cole, MS: Thank you. It's certainly a comprehensive, multidisciplinary approach. And Dr. Quevedo, I'd like you to speak about early referral. And letting other providers know when it's so important to refer suspected endometriosis patients. But while you're doing that, tell us when you get these patients, what's the first-line medical treatments for their symptoms? Are you working on the underlying condition, symptom management? Speak to other physicians now about when to refer and what you're going to do with their patients first.

Dr. Amira Quevedo: Thank you, Melanie. And again, thank you for this kind invitation. Yes, referral is definitely something that sometimes gets missed. Like Dr. Moawad was alluding to, there's a big diagnostic gap from the time that patients get symptoms, usually around very close to menstruation shortly thereafter. And then, when they actually get diagnosed, sometimes, on average it's between seven and 12 years, depending on the studies that you look at. And these are in developed countries. So, we're not talking about underdeveloped or third-world countries. We're talking about countries that have very sophisticated diagnostic procedures like MRI and ultrasound.

And so, the imaging really shouldn't deter physicians from referring these patients early. And the main thing is that we see a lot of patients going to their family medicine doctors or their internal medicine doctors. They're seeing the primary care providers first and they're having these symptoms, but because there's a little bit of a lack of awareness of what normal menstruation is supposed to be, patients either feel stigmatized or they feel like at times the diagnosis isn't thought of early enough. And so, usually, they present early after menstruation starts. And these are patients that can start on the first-line therapy.

So usually, anti-inflammatories as well as oral contraceptives or hormonal medications. Hormonal medications are really the first-line treatments. And so, that can include anything from combination birth control to progesterone-only pills. And these are fairly effective for the vast majority of patients. The only problem is that there's a certain group of patients with endometriosis, and it's very significant. It can be somewhere up to 30% that either don't respond well to these medications or they have a lot of side effects. Most of them are refractory in terms of if they're starting the birth control pill and they've been on it for a period of two or three months, they're still having to stay home from school. They're not going and attending their college classes because of the debilitating pain. And so, these are the patients that usually get referred to us because they are failing the most common in first-line therapies.

And the other group is patients that are trying to conceive. So, all of the hormonal therapies that we have available to us to treat endometriosis also while patients are taking it don't allow for them to conceive. So, this is a very important group of patients that we see is patients that are actively trying to start their families for the first time, or they've had a family before and they're having trouble conceiving their second child, or they're failing multiple rounds of fertility treatments. And so, they come to us because they either have pain and infertility or just infertility, so just to readdress the symptoms of endometriosis. Sometimes patients don't actually have classic pain symptoms. Most patients do. Most patients have really debilitating pain, but some patients just have infertility as their main symptom. And so, that's a very important group that gets referred to us because the available therapies can't address the concerns for fertility. And fertility has been shown to be improved after surgery. especially, like Dr. Moawad said, when done in the right setting with the right surgeon because a lot of harm can be done if the surgery's performed by somebody who doesn't have the skillset, doesn't have the proper training to preserve the ovaries, preserve the fallopian tubes, take in mind the whole picture of why the patient is presenting. And a lot of patients come to us, they're at the consultation for a second or third opinion because they've been told that the only way that they can get rid of their endometriosis is through a hysterectomy.

And Dr. Moawad had said like, you can have the surgery and you can have your uterus removed and you can still have a lot of pain, because there's a lot of disease that can be left behind on the bowel or the bladder, the appendix. And so, these are very important conversations that need to be had about not just offering patients the surgical management, but also the quality of the surgery. And that's what the multidisciplinary team allows us to do, is to really be able to offer the patients top-notch care in a setting where they're able to meet their priorities, meet the patients where they're at.

And I'd like to add something really unique about the University of Florida in our center of excellence. So as both Dr. Moawad and I being surgeons of excellence in the center for complex endometriosis care, we are also really excited about being part of research in endometriosis, because the main medications that are available to patients are hormones, like we said, the limitations of that. And we have a lot of clinical studies involving patients with endometriosis and seeing if we can look at other pathways that can treat endometriosis pain and treat the endometriosis lesions either through looking at the microbiome or looking at the mitochondrial health of patients with endometriosis as well as using the very rich resources in artificial intelligence and the strong research infrastructure at the University of Florida to be able to enroll patients that may not otherwise have many options for endometriosis in some of our studies that we're so privileged to be a part of. So, I think that makes our center of excellence pretty unique.

Melanie Cole, MS: Well, it certainly is a very exciting time in your field with so much, as you say, research and advancements. And I'd love to give you each a chance for some final thoughts. Before we do that, Dr. Moawad, tell us a little bit about the what the evidence tells us about outcomes when surgery is performed in high volume centers like yours. What are your patients saying?

Dr. Nash Moawad: There are so many studies about outcomes and it really depends on what outcomes are you looking for. So when you look at pain, there's a pretty good success rate for complete excision of endometriosis in terms of helping pain, if endometriosis is the only source of the pain.

But a big component of that is really in the pre-op assessment. So in our pre-op evaluation, we really need to get to the bottom of things, because it frequently isn't just endometriosis, it's endometriosis along with muscle component in the pelvic floor. There may be a GI component. There may be other issues going on. There may be a bladder component or a urologic component. There may be some mental health issues that need to be addressed and taken care of. So, it's really about comprehensive and a whole person approach, not just "You're here for endometriosis pain, let's do surgery," and that takes care of all problems. So, it's really important to make all the diagnoses and address each one of them separately.

The outcomes are pretty good in terms of pain relief, good in terms of improving fertility and recurrence rates are low when surgeries are performed by high-volume surgeons and specialized centers of excellence. The rate of preserving organs is much higher when surgery is done properly in those centers. So, it's extremely rare where we have to remove an organ for endometriosis, unless it's the appendix, for example. But the vast majority of the time, we're able to preserve all organs and just treat the endometriosis without removing end reproductive organs.

Melanie Cole, MS: Well, thank you for that. And Dr. Quevado, if you could change one thing about how endometriosis is taught in medical training because of the difficulty in diagnosis and the time factor involved and the fertility and the quality of life and the pain, all that goes into this condition, what would you tell medical students about this condition?

Dr. Amira Quevedo: We actually have a whole curriculum around endometriosis and dysmenorrhea and chronic pelvic pain. But I actually never received that when I was in medical school. So, I think definitely starting earlier definitely helps in just having a standardized approach in medical school education because this is something that affects, probably more than 200 million women around the globe at this point. These are publications that are now several years old.

So, I think starting earlier, and it doesn't really have to start in medical school. I mean, this should be something that should be broadcasted on the local news, it should be part of high school education, because that's really when patients start to really have a lot of disturbing and disabling symptoms. So, I say let's even broaden the scope to middle schools and high schools and have that be part of health education. And just having patients know what normal menstruation is supposed to be like and what menstrual health really is.

Dr. Nash Moawad: And I would like to add something, Melanie, as a message to patients and a message to pediatricians and primary care providers. A key part of the success of treating endometriosis is early diagnosis. When women suffer for many, many years, it's difficult to get them back on track very quickly just with surgical management.

So, I would recommend for any young woman and her family and her pediatrician and the primary care providers and the ER physicians, if the patient is suffering with severe pain with her cycles that's affecting her life, keeping her from performing her fun activities and going to school and doing all her hobbies and getting together with her friends, the pain is lasting longer and longer and getting progressively worse, pain has not responded to typical medical management options like ibuprofen and naproxen and birth control pills and the usual hormones, pain affecting bowel movements or affecting urination, pain affecting sexual activity, difficulty having babies, it's best to seek care early and it's best to seek care at specialized endometriosis centers of excellence, especially if surgery is proposed.

If surgery is proposed, I highly recommend either seeking care at a center of excellence or getting a second opinion. There is nothing negative at all about seeking a second and a third opinion before you have that first surgery, because if we can maximize our outcomes from that first surgery, we can decrease the number of surgeries and the complications of surgeries and what that leads to.

Melanie Cole, MS: What great information you both have shared with us today. Thank you so much for really sharing your incredible expertise and the center of excellence at UF Health Shands Hospital. And to learn more about endometriosis care at UF Health Shands Hospital, please visit ufhealth.org/conditionsandtreatments/endometriosis. And for more information, you can always go to innovation.ufhealth.org. That concludes today's episode of UF Health MedEd Cast with UF Health Shands Hospital. I'm Melanie Cole.