The Endometriosis Journey: A Comprehensive Resource from Diagnosis to Treatment

The Problem with Fellowships in Endometriosis

Dr. Jose Eugenio, MD

The problem with fellowships in endometriosis or in minimally invasive GYN surgery is that not all fellowships are alike, right? American Association of Gynecologic Laparoscopists (AAGL) has their fellowship in minimally invasive surgery in multiple universities and non-university hospitals around the country. So, depends on which hospital you go, depends on who is the person training you, you will be exposed to much more or less endometriosis.

To put it in context, I think the year I graduated residency in 2011, I went back for fellowship in 2015, finished in 2017. The year I graduated from fellowship in 2017, we did an internal polling with me and some of my classmates. The average amount of endometriosis surgery that people did was no more than 20. And that is in a dedicated specialty in minimally invasive surgery. From my own experience at that time, when I did my fellowship for the first year and a half, I don’t think I did over 30 surgeries of endometriosis, of complex endometriosis, right?

But in a month here, during my fellowship when I did this rotation, I did 35 surgeries. After two months I’ve done over 60 surgeries for endometriosis. Then I finished my fellowship. I actually requested and begged Dr. Sinervo to see if I could stay longer and continue learning on endometriosis because I liked the way that he approaches it. More than liking the way that he approached it, what I fell in love with was the results that he was getting with patients which is something that I never seen in my career as an OB/GYN in the United States. I saw patients that had a year, 2 years, 5, 10 years after surgery that came back after their childbearing years have been completed and they wanted a hysterectomy. Essentially people that had 20, 30 specimens of endometriosis in their first surgery and had one to no specimens of endometriosis 10, 12 years later. Even though there’s no cure, we did multiple surgeries of patients in which we’re doing hysterectomies after they’ve completed having kids. We didn’t find any endo, right? I’ve never, ever, ever seen that. And we looked. It’s not like we’re repeating the surgery, no, no, no. We remove a lot of specimens and none of that stuff came back as endometriosis in the second surgery. I’m like this is onto something.

Then when I went to St. Louis, I basically forbade anything related to obstetrics and just focused one hundred percent in an endometriosis practice, which Dr. Patrick Yeung had continued to develop in St. Louis after leaving here. He was there for 10 years, so it’s really easy for me to just stay in the same goal or the same field, which is, I think, what needs to happen. It needs to be totally separate. It has to be specialty endometriosis practice. And for me, it was easy because when I went to St. Louis, we already had a colorectal surgeon. We already had a cardiothoracic surgeon to do some diaphragmatic cases.  We had a urology team that would see, gynecological urology team that would already know about painful bladder syndrome, plus a whole slew of specialized sonographers for complex endometriosis scans. I’ve been very lucky in that sense. I didn’t have to build anything. I came in, the system was already implemented, and I just have to thrive. It was really good.

Dr. Amy Stein, DPT

Yeah. That’s similar to pelvic floor physical therapy, just the training. You can’t get it in PT school. And then even outside of PT school, it’s so varied, which makes it very similar in the sense that like, you can go to an endo specialist, and you could do really well with someone like you. You could go to another “specialist” and not have as much success. Physical therapy, as you know very well, is similar in that it depends a lot upon the training.

Prehab with Pelvic Floor Physical Therapy

Dr. Amy Stein, DPT

Yep. From your experience of working with physical therapists, why is it important to have the physical therapists do prehab and posthab for a patient like this?

Dr. Jose Eugenio, MD 

The most important part about this is that a lot of the times patients get surprised that we send them or I want them to start doing pelvic floor physical therapy even before surgery. And they’re like, but I haven’t had surgery yet. I’m like, no, no, no, you’re not understanding the tricks and the tips that they’ll give you. The way that they’ll talk to you about breathing, abdominal breathing, diaphragmatic breathing, pelvic motion, the way that they can teach you how to contract, how to relax your pelvis. All of those things are not after surgery. They’re additive to the surgery. They’ll help us understand what’s happening to your pelvic floor. And then what is happening with your pain? Is the pain more downwards or upwards? How is your pelvic floor impacting your overall quality of life and pain? And then after surgery, patients are very surprised when they see that they have a significant improvement in their quality of their pelvic floor.

Sometimes if you just send them after surgery, they don’t have that evaluation before, then they don’t know what’s truly going on or if it’s actually working. Right? That’s one of the important things about sending patients to go to pelvic floor physical therapy before. In some cases, some, some patients may even need to do at the time of surgery, pelvic floor trigger point injections. You may need to do blocks of the cervical obturator or prudential nerves. Right? All these things need to happen sometimes before surgery. It helps us identify a lot better what are the things that we need to change after surgery or how can we focus on the things that need to change after surgery? It’s important for them to understand that surgery is not the only option for pain control.

One of the things that we’re big on is the patient has to understand that when we do surgery, they’re going to be my patient forever. It doesn’t matter if I go anywhere, Dominican Republic, Uganda, France, Mexico, it doesn’t matter. They’re always going to be my patients. I’m always available for my patients to talk or have a conversation to know what’s happening. And one of the things that I tell them after surgery, they need to monitor bowel, bladder, pelvic floor, and sex. And other types of pain, like depending if they have diaphragmatic or a vocal or other issues that we need to focus on. But the beauty about this is that when we follow them prospectively for a very long time, we can tell how things are working. We can tell if it’s more a bowel issue, it’s more a bladder issue, if it’s more a pelvic floor, or if it’s a cyst or something. It’s something that we have to make sure that they understand that it’s not surgery and you’re done. And then you’re in more pain, I don’t know, I did surgery, I’m good, just go somewhere else. No. Like we don’t dismiss patients. We want to make sure patients understand that forever, whenever they want to see us, I usually schedule them.

Let’s say that we do a random surgery for endometriosis. We’ll do a visit one to two weeks after surgery, eight weeks after surgery, six months after surgery, and a year after surgery through telemedicine. For example, I talked to a patient that she had a year after surgery. She’s doing great, right? She’s doing great. Bowel is perfect. Bladder is resolved. Periods, she’s taking one ibuprofen in the whole four or five days of her cycle, which is unheard of for her, but she’s still having a little bit of issue on pain on insertion during sex. Right? So that is something that once we identify it early, that she understands, like the pain that I’m having is not endo pain, its pelvic floor pain, because that’s the beauty about having patients understand this before. It’s easy for them to like, no, no, no, this pain that I’m feeling on this side is endo. This pain I’m feeling on that side, it’s actually more pelvic floor. But if they never go to pelvic floor physical therapy before surgery, it’s way harder for them to do.

Dr. Amy Stein, DPT

They won’t understand.

Dr. Jose Eugenio, MD

What’s your opinion on this?

Dr. Amy Stein, DPT 

Well, on that one, that patient that you just mentioned, right away I’m like superficial transverse perineal muscle, deep transverse perineal muscle. Someone’s got to get on that external perineal body and on the layer one of the pelvic floor. Those are usually the culprits for pain with insertion. But yeah, I find the same thing. I find that dialing down the pain prior to surgery, they have better outcomes with the surgery. Helping to get rid of the trigger points. If there’s gripping in the abdominal wall, if the diaphragm’s not even moving because of the endo or because of guarding. They’re guarding because of all the pain and discomfort or they’re not breathing properly. Like they’re using like all chest breathing and they’re not expanding their diaphragm. So yeah.

Dr. Jose Eugenio, MD 

That’s funny you would say that, but because a lot of the times after they come in and they do the prehab, like they’re like, I didn’t realize I was doing all this. Right. And it’s because nobody talks to them in a general GYN practice about what are the benefits of this? And it’s not only for endo, there’s a lot of different conditions. Patients that may not even have endo, having prehab or pelvic floor physical therapy can contribute to their overall well-being. It’s very important.

But also, it’s important who you go to because it’s just like you said, for example, when I was in St. Louis, we had a big team of physical therapists and some of them worked with other physical therapists that were only focusing on pelvic floor, internal and external work. Not all physical therapists are the same, just like not all gynecologists are the same. Or not all GYN surgeons or not all endometriosis surgeons are the same. That’s the importance of working and having that direct feedback with our PT team. Like I send you a patient and you’re like, hey, she’s doing well. And every couple of months or every couple of weeks I get a report back and they say, okay, this is what happened. This is where we work at. And then this is how she’s improving. And sometimes if they hit a wall, then okay, look, you’re hitting a wall for this. She’s finding that the transverse perineal, you’re having significant issues, or the ischial or bulbar muscles, you’re having some issues. Let’s go in and let’s do a trigger point injection, localized. And we can go and do a trigger point injection.

I had a patient recently that we took back after she hit a wall at PT, and we took back and when I did the sonogram, I did the exam, identified her uterosacral as being part of the culprit. We just did a block and we injected 10 ccs in each uterosacral and she called back a week later that she says like, I did not know that regular people poop like this. And it sounds funny that somebody tells you that they’re happy, you just sit and you poop and you don’t have to do anything. No, no tips and tricks, no breathing, no legs. You just sit, poop, right? That tetanic contraction of her uterosacral and pelvic floor cause her to have significant pain because a lot of times it’s important for them to understand that sometimes that contraction that they’re doing without really noticing that they’re doing, it’s a defense mechanism. But over time, that defense mechanism turns against the patient. It’s learning how to relax those areas. This is not the time to tell patients like, you have to do more Kegels because that’s not going to end well.

Dr. Amy Stein, DPT 

Right. Yes. Have you ever had patients that do the prehab and then they don’t have to go through surgery or do you?

Dr. Jose Eugenio, MD 

Yeah, that happens too because the only indication for surgery is pain. Sometimes we have patients that are a year or two years out of surgery and they have pain. W e evaluate them. Before we take you to surgery, let’s just be a devil’s advocate and just trust me on this one. Let’s have you go to a pelvic floor PT and let’s give it a month. And they give it a month and they come back, how’s the pain? I don’t have any pain. Well, congratulations. I cured you without having to do surgery. It’s important that patients get evaluated for this.

I mean, it’s one of the things that I did a lot before, it’s a little harder now because we have a lot of patients coming from all over the world, from literally all over the continent we’ve operated. I think the Center for Endometriosis Care (CEC) has operated on patients from over 70 different countries. Last month, I want to say that we’ve operated on people from six different countries, Dubai, Canada, Mexico, Dominican Republic, France, just in like a month. Sometimes I wish that some of our international patients could benefit from seeing people in our PT team, but it’s a little hard for them because they come in for the surgery, then it becomes harder for us to manage that portion of their care. Sometimes what we do is, we try to get them here a day or two before the surgery so that they can go see PT and then get that feeling of what are the things that are working or not working afterwards.

Dr. Amy Stein, DPT 

We get quite a bit of patients from out of town too. And we try to at least see them for like the three to four days, but it would be hard to see them like right after surgery. So yeah, that makes sense.

Diagnosing and Evaluating Endometriosis

Dr. Amy Stein, DPT

You mentioned earlier about diaphragm type symptoms. You just mentioned bladder, bowel, intestine. What are some of the symptoms and reasons for sexual dysfunction or sexual pain?

Dr. Jose Eugenio, MD

It’s important for us when we’re educating patients or asking questions about endometriosis, one of the things that we talk to them about is sexual pain. Sexual pain is divided in two, mainly, right? It’s pain on insertion and pain deep inside. We separate the pelvic floor from pain with deep, deep penetration. Pain with deep penetration can be associated usually to more disease at the level of the uterosacral ligaments or nodules of endometriosis between the rectum and the vagina or behind the cervix or the connection or joint or abnormal junction between the cervix and the intestine. That’s very separate. It’s important for them to make that distinction. And some patients have pain on both or none or one or the other. That’s important. When we are doing an evaluation of the pelvic floor to the patient, we basically give them a picture so that they can see what are the muscles of their pelvic floor, right? We talk about the vulva, the ischios, the superficial, the deep. We talk about the obturator internus muscle, all these muscles in the pelvic floor that contribute to the overall health, the levator ani. They need to know what is it? And one of the things that we do in order for them to start differentiating one muscle group from another is that when we do an exam in the office, guess what we do not use?

Dr. Amy Stein, DPT

A speculum.

Dr. Jose Eugenio, MD

A speculum. We do not use a speculum. And patients are like, you’re not going to use a speculum? Like, no, I want to make sure that I’m examining your pelvic floor in its entirety without using a speculum. We need to basically do a digital exam of each one of these muscles. And I ask them to give me a number from 1 to 10 on how much pain do they have when I touch these muscles individually, right? Starting from the outside of the vulva and vagina. We look for the clitoral reflex. We look for the anal wink. We look for all these things that can actually tell us what’s happening with the pelvic floor of the patient. We look for tone. We look for being able to relax it to what happens to the pelvic because it’s a dynamic organ. It’s a dynamic muscle group. You want to make sure that you’re examining it under different tension.

We use a Q -tip test on the outside to see if they feel the same way on the right side to the left side of the vulva. If they have any differentiation in their muscles, in their legs, do they have any weaknesses in their legs? Because that can tell me if there’s any deeper endometriosis all the way down to like their sciatic nerve. We touch the labia separately with Q -tips to see if they feel the same, if they can feel the difference between something that’s sharp or pointy and something that’s dull.

Patients are like, wait, I don’t feel that on that side. Well, then that’s something that we have to explore. That’s when we start introducing what? The dermatomes. We start introducing the dermatomes. We literally show them the vulva dermatomes so that they can see. And we give it to them (printed on a piece of paper), depending on what her signs and symptoms are. I want you to take this with you and your next period, I want you to start marking with an X very specific where the pain is. Is it at the groin? Is it the labia? Is it besides the clitoris? It’s under, is it more towards your butt? Because if they don’t know where the pain is, we can’t find it. One of the best predictors of how good the surgery is going to be, if the patient can actually localize her pain, it’s different if she says, I have pain here, than I have pain over here.

That’s important. That’s why we try to be as specific as possible. And I know some patients are like, well, nobody’s ever asked me so many questions. I’m like, okay, I don’t know about that, but I just want to get to the bottom of where the pain is. Because the worst thing that can happen is that I do surgery and then your pain has not even changed. That is horrible. That’s why we’re asking patients questions so that we understand, and we can localize where the pain is. If we can localize and we can touch it, we can improve it significantly.

Dr. Amy Stein, DPT

Yes, agreed. And do you find that birth control pill or IUD, that that can be helpful enough so that a patient doesn’t have to have surgery, or do you feel that, you know, surgery is always like needed in the case? 

Dr. Jose Eugenio, MD

No, surgery is not always the answer. But we talk to patients a lot about their signs and symptoms. The only reason to do surgery is if the patient has pain. One of the things we got a lot of, or I got a lot of criticism about before, was that my rate of finding endometriosis was over 90% because if I find endo and it’s documented by the amount of surgeries that I did and how many patients had a positive result on pathology, right? We got into some conversations with some of my colleagues before in the university settings and they’re like, well, if you’re finding so much endo when you operate on patients, it’s not that all the patients have endometriosis that you see. I was like, no, they don’t. But the reason is that I want to make sure that whoever I take to the operating room, has a very high likelihood of having endometriosis. The last thing I want is to put a patient to the financial strain of surgery or the risk of surgery and not finding endometriosis. And even though it’s really low, less than 10% of the patients that we operate don’t have endometriosis, they may have something abnormal still, either fibroids or adenomyosis or pelvic inflammatory disease, but they may not have endometriosis. It’s important for us to be very judicious in who do we take to the operating room because we don’t want to expose people to risk for complications.

To answer your questions, one of the things that we don’t do is we also don’t mask the disease. Right. We can tell patients, hey, listen, if you’re having pain, depending on the evaluation or the patient’s goal, we could consider why don’t you start birth control for a couple of months to see if it works if she is OK starting birth control. Or why don’t you start doing some lifestyle changes, doing PT, doing exercises, doing some things that can improve your overall quality of life. And if your pain disappears, then we don’t have to do anything. We can just monitor long-term like that. You’re having pain? No, pain with sex disappeared. I’m just taking birth control. But they have to understand that the fact that birth control or other medications removes your pain doesn’t necessarily mean that they don’t have endometriosis. It means that if they’re not in pain, they don’t need to have surgery. It’s a different thing. It’s not that they’re cured, or they don’t have any endo.

There’s a beautiful study that was done a while ago. It talks about divided approximately 50/50 patients. 50 patients for one group, 50 patients for the other group. The first group were patients that had pelvic pain and some issues suspected to be endometriosis were giving birth control and while they took their birth control, their pain improved. And then the other group was a group of patients that had suspicions around endometriosis were still given birth control and their pain did not improve. You have 50 patients that their pain improved, 50 patients that their pain did not improve with birth control, but they had the same symptoms throughout before taking birth control. Now what happened? They were all taken to the operating room. 60 plus percent of the patients in one group, like 68% of the patients and the groups that their pain did not improve with birth control had endo. And like 65% in the group that their pain did improve with birth control had endo. What does that tell you? That the positive or negative result on birth control has nothing to do with whether the patient has endometriosis or not. What I tell patients is the reason we find such a high number of patients is that it’s like playing the lottery with a cheating hand.

There’s a couple of questions that when you ask the patient, are you having this X, Y, and Z. If they have this, any family history, they have over a 70% chance of having endometriosis at the time of surgery. Then it’s like, if you had a 70% chance of winning the lottery, you’d probably play more often. That’s what we do. It’s just a numbers game. We’re talking to the patient. We’re inquiring, did you go to PT? Did it help? Did it not help? It did help, but I’m still having this pain that is different. Or now I can differentiate what’s pelvic floor pain from what’s internal pain or abdominal or pelvic or side pain. Right? So that’s the importance of having patients go to PT before surgery.

Dr. Amy Stein, DPT

What is considered an accurate diagnosis of endo now?

Dr. Jose Eugenio, MD

A lot of people are talking, there’s a lot of conversations right now, for example, about giving patients drugs that have significant side effects. And I don’t want to point fingers or say names of drugs not to be canceled or anything. Not that I really care that much, but there’s a lot of doctors specifically that are starting patients on these GnRH agonist antagonist medications that have significant side effects. And if their pain disappears, they’re like, okay, fine, I’m not doing surgery. But they have all the symptoms and then the patients come back, and we see them after taking these medications for a year or two, they stop the medication, and their pain is right back to where it was before. Or worse, I have patients that are given medications and they’re taken to surgery while they’re taking the medication that’s supposed to hide the disease, which in my mind is bananas. You’re going to suppress a patient, suppress her cycles, have or not have any periods, and then you’re going to look for a disease that’s suppressed with the medications that you’re giving. You’re going to miss a whole bunch of early lesions. That doesn’t make any sense to me.

Dr. Amy Stein, DPT

And what other conditions are mistaken for endometriosis? I know you said, obviously pelvic floor can be contributed to the pain and that can mimic symptoms of endometriosis and painful bladder syndrome. What other ones? Those are the main.

Dr. Jose Eugenio, MD

One of the things that I tell the patients that when we’re talking about pelvic pain, we have to divide the pelvis or causes of chronic pain in five different categories, right? Category number one, gastroenterology. Crohn’s disease, ulcerative colitis, inflammatory bowel syndrome, small intestine bacterial overgrowth, chronic constipation, chronic diarrhea. Five quick things just from your GI tract that can give you chronic pelvic pain. Then we go to urological causes. You can have urethral diverticulums. You can have bladder spasms because of interstitial cystitis. You can have the inferior hypogastric nerve lesions that could be affected by endometriosis. You can have endometriosis of the bladder. You can have ulcers in your bladder that can cause significant issues with pelvic pain.

Then we go to gynecological causes of pelvic pain, which are fibroids, adenomyosis, endometriosis, pelvic inflammatory disease because of sexually transmitted diseases, abnormal cyst, endometrial polyps, cervical polyps, cervical cancer, uterine cancers, only from the gynecological portion of it. After that have musculoskeletal causes. Pelvic floor. It could be vaginismus, it could be vulvodynia, it could be pelvic floor dysfunction, because we were having dysfunctional or dyssynergic defecation, dyssynergic urination. You can have a lot of different things. It could be something affecting the obturator nerve, the pudendal nerve, right? It could be all these other things that can cause significant pain to the patient. And then we have chronic pelvic pain syndromes.

The example that I usually tell my patients is if you have a soldier that goes off to war, and they step on a landmine and they blow their foot off, they have significant pain in that foot that was amputated above the knee after the landmine went off. They don’t have that foot anymore, but they have pain and they feel like that there’s something grabbing onto that toe and causing significant pain. That could be a neurological cause of pain which can cause central pain sensitization because the nerves that were going to that specific location are just sending abnormal impulses to the brain relaying hey there’s a turtle biting my toe despite the fact that I don’t have a toe. It could be many different things.

Dr. Amy Stein, DPT

Yeah, we see that quite a bit too, where a lot of the musculoskeletal system gets significantly improved, but they still have those abnormal pain syndromes like the phantom limb syndrome where they’re still feeling the pain in the area, but yet the musculoskeletal is improved. That’s where the pain signs come in and the importance of educating on pain science and trying to down regulate the system. As you know, do mindfulness practices and trying to calm things down. It could be extremely effective for these patients. But yeah, it’s definitely complex. You guys are definitely the experts in this area. We appreciate all you do and everything you do for your patients.

The Impact of Endometriosis on Fertility

Dr. Amy Stein, DPT 

How does endometriosis affect reproductive health and fertility?

Dr. Jose Eugenio, MD

Thank you. Endometriosis affects fertility in multiple different ways. We’re talking about infertility. We have to evaluate how does fertility happen in the first place. We talk to the patient about how does the sperm get to the egg? After intercourse, the sperm goes into the vagina and gets sucked into the uterus and it’s supposed to travel when it’s into the uterus outside of the fallopian tubes to cover both ovaries and sperm for a couple of days. Sperm lasts in the abdomen covering the ovaries a couple of days waiting for patients to do what? To ovulate. When ovulation happens, the function of the ovary is to create a cyst and inside of the cyst they have an egg. When I tell patients what the function of the ovary is, 90% of them can’t tell me because it’s something that sometimes it gets forgotten or it’s not taught really well. But the function of the ovary is to, it’s very simple. It’s to create a cyst and inside of that cyst I have an egg. And as that egg is growing, it’s producing what? Estrogen. That estrogen goes inside of the uterus and makes the inner lining of the uterus endo inside, meet your matrix.

One of the jokes that I tell off into my patients is that we Latinos call the uterus the matrix. Utero o matriz. The inner lining of the uterus, it’s endo inside meet your matrix and the muscle or the covering of the uterus, it’s myo muscle meet your matrix. The muscle of the matrix and the inner lining of the matrix. The estrogen goes to the inner lining of the matrix and makes what happens. It has little tentacles grow into the lining of the matrix and these tentacles are like Velcro and their function is to do one thing. It’s to latch onto the placenta. When the cyst breaks and ovulation happens, the egg gets together with the sperm at the level of the ovary and the fallopian tube or the entry of the fallopian tube. But we ask a very simple question. If you have sex today and you do a pregnancy test tomorrow, it’s going to be positive or negative? It’s going to be negative. What about the day after you have sex or two days after you have sex? It’s still going to be negative. Why? Because pregnancy happens at the end of the fallopian tube, but the baby grows inside of the uterus. When that happens, that baby has to travel from the fallopian tube or the bigger opening of the fallopian tube close to the ovary and has to then travel all the way inside of the uterus where it’s going to implant itself and seed itself inside. That is the regular process that has to happen for a woman to get pregnant.

Now, how does endometriosis affect this? Number one, remember the example I was telling you. How when you bleed, from your hand, you can have inflammation. The same thing endometriosis does inside of your pelvis. If it’s on top of the ovary, on top of the fallopian tube, behind the uterus, behind the ovary, on top of the bladder, that can cause a massive amount of inflammatory fluid to build in this location. Sperm is alkaline, so if you have alkaline sperm coming into the body and you have alkaline sperm dumping into a pool of acid, it’s going to die. That’s one way. What’s another way? The sperm lasts usually around two to three days inside of a woman’s abdomen, right? Behind, in that posterior uterine pouch, just waiting for ovulation to occur. But once the woman ovulates, the egg only lasts for 23 hours and 59 minutes because the egg is precious. It’s only one, so it’s really, really precious. That egg is just waiting there to be fertilized by the sperm. But if you drop the egg in a pool of acid, right? That’s another reason why the egg can actually have an issue.

Let’s say that the egg did survive the pool of acid and the sperm did survive the pool of acid. Now you have an embryo that’s developing inside of a pool of acid and that embryo has to then travel back to the uterus. If the scar tissue that happens to the fallopian tube causes that fallopian tube to be small enough for the sperm to go through, but the embryo is quite big so when it’s coming back it can get trapped inside of the fallopian tube causing an ectopic pregnancy. That’s a way that endometriosis is going to affect pregnancy. That’s another way. It can also completely obstruct the fallopian tube. And when that happens you have inflammatory fluid building inside of the fallopian tube that would not allow sperm to get in but also would not allow the egg to be picked up. In that case that fallopian tube that can cause a massive accumulation or hydrosalpinx or hematosalpinx, which is a fallopian tube full of blood or water. That water that’s being produced, some of it because of pressure gets dumped inside of the uterus. If the other fallopian tube was open and then you were able to get pregnant and now you have a baby inside of the uterus, that other fallopian tube that’s blocked, because it’s usually blocked in the outside end, not the inside end. That fluid that’s being produced, it’s known to be cytotoxic. That fluid is a baby killer. When women get pregnant and they have a blocked fallopian tube, they have a super high chance of having a miscarriage or abortion because now you’re trying to grow a baby inside of a uterus that’s surrounded by inflammation and by abnormal immune response that can actually hurt the baby, which is why women with endometriosis have an increased risk of miscarriages or abortion. There’s many different ways that the endometriosis can negatively affect the growth of or the possibility of pregnancy.

Dr. Amy Stein, DPT

Right. And is that why for some, the surgery is an indication to help them? How would surgery help with that patient population?

Dr. Jose Eugenio, MD

What happens is that number one, what we usually try to do is give the patients the possibility if they can to get pregnant naturally. Not only once, but multiple times if they want throughout their life. What our approach is, we want to go inside. We know that endometriosis is one of the biggest causes of infertility in the world, if not the biggest.

There’s data that talks about the possibility of, if you have a patient that has infertility, what is the definition of infertility? It’s having a woman have sex for a whole year, less than 35 years old, giving it the good old college try for a whole year and not being able to get pregnant. If she meets that definition of infertility before 35 years old, because if it’s over 35, it’s only for six months. But if you meet the definition of infertility, I have a period and I’m at the beach with my friends and I just realized that I just got my period today because I started spotting. That’s so meaning that you’re one of those lucky women that has, not lucky because that’s normal, right? You’re one of those women that have a really normal period with not even taking Tylenol or ibuprofen or nothing. You’re just use a pad, or a tampon and you go about your life and your periods don’t change your things that you do at all. And you have infertility, the possibility of that infertility being caused by endometriosis is 50%, up to 50%.

But if you have infertility, on top of that you are part of the group of women that a couple of days before your period, it’s like, you know, a hurricane is coming. The weather channel already told you that it’s going to be raining. You know that’s going to happen a couple of days before it does. You start planning your life around your period. Wait, I have a meeting. Maybe I can push the meeting for the following week or do it sooner. Or I have some job thing or some party or some wedding. I’m planning everything around my cycle, and you have severe pain with your cycle. You have painful with deep penetration, pain with bowel movements and in urination and horrible periods. Then the possibility of that endometriosis being the cause of your infertility if you’re this type of woman, could be up to 87%.

With or without painful periods, endometriosis is extremely high possibility of patients having infertility. In fact, a lot of our patients continue to get pregnant many, many years after surgery naturally, because what we want to do is we want to remove what’s causing the infertility in these patients, which is actually the endometriosis. You go inside and remove the disease and use membranes and barriers and different tips and tricks that we already developed for a while in order to improve their quality of life, but also to minimize adhesion formation or scar tissue formation so that their fallopian tube works phenomenally, and their ovaries are not having endometriomas. We’re able to get patients pregnant naturally. And in the off chance that we still can’t do that because we had to cut out her fallopian tubes, then we send them to infertility treatment. But after we’ve done surgery, because our approach is different.

We’ve seen, like the example that I told you before, that when patients that have severe endometriosis get infertility treatments, their endometriosis becomes way, way worse. So yes, we’re bypassing the reason for their infertility, but what happens later? What happens if they get pregnant, phenomenal. If they get pregnant, but then after the pregnancy, then we have to see the repercussions of endometriosis embedded into the vagina because in order for them to remove it, to like get again the eggs, they have to basically put a needle through the vagina, go into the ovary and harvest the eggs. But that same technique can actually cause endometriosis to be implanted besides the cervix at the level of the vagina, which we see here all the time. And then we have to remove a part of the vagina. The ureters can be compromised.

We’ve seen lots of patients here that have lost a kidney because they have these nodules besides like at three and nine besides the cervix or at the level of the uterosacral that’s expanding laterally and it’s taking the ureter and the patient just lost her kidney or the patient that I talked to earlier that after an infertility procedure or after an IVF attempt, she had two, she collapsed a lung because of all the endometriosis and she developed an endometrioma inside of the chest and another endometrioma on top of the liver. I want to say yesterday, she lost over a fifth or over 45% of her diaphragm that was just infected and part of a lung with endometriosis. These are the things that we need to be cognizant of.

Dr. Amy Stein, DPT 

Right. Yeah, we really appreciate one, working with you guys side by side and helping these patients because it is so rewarding. And on top of that, when we’re working together to end helping these patients with fertility and pregnancy, it’s super rewarding because obviously the PTs, the pelvic floor can contribute to the pain with sexual activity, abdominal pain and all the above. I know we both find working with our patients extremely rewarding. Challenging, but rewarding.

Difference Between Excision and Ablation Surgery

Dr. Amy Stein, DPT 

Tell us the difference between excision and ablation surgery because I think a lot of people understand the difference more now than they used to, but I still feel like there’s a big void with understanding the differences. 

Dr. Jose Eugenio, MD

Let’s see, how do we simplify this? Imagine having a garden and you tend your garden, you love it, you plant beautiful plants all over it and you love your bushes and your roses and everything. But between these beautiful plants that you’ve carefully tailored, you have some weeds and these weeds continue to grow and they’re very aggressive. In order for you to remove these weeds, what you’re doing is actively burning what’s above the surface. You burn what’s above the surface, but there’s a limit of how much you can burn above the surface because it’s besides or it’s really close to things that are very precious and beautiful to you. Ablation, the same thing happens. You see a lesion of endometriosis on the pelvic sidewall. You see a lesion of endometriosis on top of the ureter, on top of the nerves, on top of the intestine. And what you do is, you very quickly use energy or something to burn, to tap the surface of something. But the problem is that that only chars the surface.

Endometriosis is not a surface lesion. It’s an iceberg. What you see is usually the tip of the iceberg and that’s where the problem lies because when endometriosis is digging inside, it’s going around really dangerous structures, which is the same reason that when patients get taken to the operating room, they only burn the surface because they’re afraid to burn deep inside. Now if somebody throws a piece of hot coal at you, for example, and you swat it away, you may feel the heat in your palm, but your hand may not get burned. Why? In order to transfer the energy, you need three things. You need temperature and pressure and time. You need to actually apply the heat under time and pressure so that the heat can distribute itself evenly and going deep into the tissue. The problem is that deep into the tissue you have five things that are very important and very dangerous, which are nerves, arteries, veins, ureters, and intestines. You don’t want to just burn indiscriminately in these things because you can have massive complications. They just burn the surface and the lesions, or the roots of the lesions stay behind.

What we do is called excision surgery. What we figure out is, where is the disease? And I’m good to go and I’m going to start removing around the disease. Like it’s a cancer. If this is my disease, I’m going to basically create a halo around it and I’m going to cut on the clean side of it so I can surround it and dig and approach the bottom of the disease. I can remove the whole thing and the roots, even if it’s on top of the bladder, even if it’s on top of artery veins, nerves or the intestines, or if it’s on top of the ureters. Why? Because I know that once I open these spaces, I have to be very aggressive. If I’m not, then the endometriosis, if it comes back, it’s going to go deeper. So it’s an example that a lot of times tells the patients, if you have a house and you go into a house and you’re buying a house and there’s a room and the room has mold on the drywall, if you just burn the outside of the drywall, the mold is actually penetrating into the studs or deeper where the studs are located. You can’t burn the surface. You have to remove all the drywall. But what’s the issue now that now all the studs, all the wiring behind the wall are exposed. That means that you have to be very aggressive because if you’re not, when endo comes back, it’s going to go back where? Into the studs, we’re talking about the pelvis. Now you have endo that’s like closer to the sciatic nerve. On top of the inferior hypogastric plexus. It’s digging towards the obturator nerve. Towards all these nerve structures or vascular structures that can make repeat surgery significantly more difficult. That’s the number one reason.

You have to go and try to make sure that your first surgery is excision surgery. And one of the things that we have to start talking to patients about now is that I was thinking about figuring out a way to have patients understand their pathology. Not like, they removed three spots of endometriosis, and it came back positive in pathology. Yeah. But look at your pictures. The whole sidewall is littered with endometriosis from surgery. And then what corresponds to that sidewall? Left sidewall and then look at pathology, left sidewall. Your sidewall has a couple of centimeters of tissue that is affected with endometriosis and the pathology says that you had 0.5 centimeters of tissue sent to pathology that’s positive for endo. What does that tell you? That not everything was removed on the site. It’s very simple. I’ve seen patients that are told, I removed your endometriosis. And then specimen sent to pathology? None. It’s bananas. Right? Yeah, I’m an endo surgeon. I remove your endometriosis and how many specimens I sent to pathology? None. So how? How was that done? How did you remove something if nothing goes to the lab? I don’t think it’s legal to cut an organ or a piece of a patient and just throw it away and not send it to the lab. I mean, you know that this doesn’t happen in cancer surgery. Would you imagine that you have cancer, and somebody takes you to the operating room and oh you have something on the inside that looks like cancer. I burned it off, but you don’t have it anymore. Wait, wait, wait. What type of cancer? What’s the issue? Where was it? Where’s the location? Oh I burned it. It’s the same thing. This doesn’t happen to cancer, so why does it happen to endo? I don’t get it.

Resources for Finding Information on Endometriosis

Dr. Amy Stein, DPT 

Yeah, I agree. We both know that the Endo Summit, which we both have spoken at, I think that’s where we met, which has been wonderful over the years. That’s a great resource for patients and it gives them a lot of more appropriate information rather than misinformation. What are other resources for patients for finding the appropriate information on how to treat and take care of endo?

Dr. Jose Eugenio, MD

Yeah, we did. The Endo Summit is a really good one for patients and practitioners to go and meet so that you get to talk to a lot of people. You get to also hear new ideas, how they’re treating endo over here, what is their experience and what are their results. That makes you good. It improves your quality as a surgeon, as a human, right? The other spot that I usually tell patients to go is actually Nancy’s Nook Endometriosis Education on Facebook. I tell everybody that comes into the practice, I recommend they go online, go to Facebook, their support groups. But the disclaimer that I tell them about the Nook is that this is not a place that you’re going to go to like, I have a headache, is this endometriosis? They’re not going to accept that. This is a place for you to go to get educated on your own time. And you are, it’s like homework, and you are required to do the reading. You are required to invest the time and effort to gain the knowledge so that you understand your disease so that number one, you’re not bamboozled. And number two, it’s extremely difficult, if not impossible, to gaslight you anymore.

It’s hard to have somebody make you question your own sanity when you’ve documented, and you know what’s happening to your body. You know what’s happening to your pelvic floor. When you know about the dermatomes, you can map out where in your leg, the trajectory of the pain. You can tell if it’s S1, S2, S3, if it’s a combination, if it’s the right leg, the left leg. It helps you understand the importance of what? Of having a really good solid document about your pain and a timeline, which is something that I require a lot of my patients to have. Just give me a pain calendar. How often are you having this spasm in your vagina or in your bladder? Or how often are you having pain in the leg? Where is all the pain in your period? In my leg, okay. If you measured it in passing and you don’t have a physician that’s going to dive into that seemingly un-seemingly important term that you just said, I have some cramping in my leg. Like what is it? Do you lose weakness? Is it numbness? Is it tingling? Is it the right side? Is it the inner thigh, outer thigh? All these things are important to know. I think they can go to the nook, get information. There are really good websites. Our website has a lot of information on endometriosis. There are different other pelvic medicine websites that have a plethora of information on pelvic floor. There’s a lot of good influencers online that are just putting a ton of content regarding endometriosis.

Dr. Amy Stein, DPT

Great. Yeah, it’s definitely important to find the appropriate sites, as you mentioned, because you and I have both had patients that have gone down rabbit holes with the misinformation and on different Facebook groups and websites that don’t have the correct information. So really finding your resources and making sure they are legitimate and up to date is really important.

Lifestyle Changes for Managing Endometriosis

Dr. Amy Stein, DPT

I do want to end on a positive note in that I would like to talk about some recommended lifestyle changes that you suggest to patients. And then I’ll just chime in for our patient population.

Dr. Jose Eugenio, MD

Lifestyle changes all implies that they know exactly where their pain is. The number one thing that I need to know is, or I need them to understand is what are the things that are causing them pain? It’s not like, I got pain over here. No, I need them to give it a name, a last name, a nickname to their pain. Because if they can identify it, we can work on it individually. One patient can have a lot of bladder issues, but at the same time have endo, or a lot of bowel issues, at the same time have endo, and they can have pelvic floor dysfunction or vaginismus or vulvodynia so it’s very interchangeable. It’s the way I think a lot of doctors fail in treating patients with endometriosis. They feel, well, I mean, I did your surgery. There’s no more endo, go away or it’s not my problem, or if you want, we can do another surgery and then we can go inside and then if they find or don’t find anything, why don’t they end the pain after the second surgery also does not improve. Right? That’s the importance about having them understand what are the things that are happening. What are the things that are giving them pain so that we can work on them individually? Right? That’s the first thing. Second thing is I usually, which is paradoxical to patients, I know that you’re in pain, but I want you to have an active lifestyle. What does this mean? I want you to consider doing yoga, Pilates or something that’s going to basically help you improve your core. But also I want them to do that, once they also know what’s the state of their pelvic floor. I want them to know because I don’t want somebody that has a really tetanic contraction of the pelvic floor to start doing certain yoga poses or certain Pilates exercises that are going to make them actually contract their pelvic floor even more. It’s identifying what are the things that are causing them pain so that we can work around them. It’s very important for them to keep a pain calendar. The pain calendar gives me information. I can see in 30 days, what were the things that were giving her pain?

But more importantly, I ask them if you have pain on X, Y, and Z, I want you to annotate what you had for food and drink for the last two days. Because a lot of the times you’re able to identify, hey, I had a pizza. And every time I have a pizza, and they don’t have to write everything that they eat. But if they have pain today, what did you eat yesterday? And sometimes you’re able to catch it. Yesterday I had a pizza or yesterday I had a glass of wine, so that you know every time I have this, for the next two days, I have a little bit more pelvic floor discomfort. That’s the importance of having the calendar, right? Or have a lot more bladder spasms because of this. And when you have a lot of bladder spasms, then that triggers me to contract my pelvic floor a lot more, which can now trigger a flare up of pain. These are some of the things that we talked to them about. Lifestyle changes that can help them.

I usually tell my patients that during sex, we have to do away with the kids are sleeping. We got two minutes. Let’s see if we can have sex. That goes out the window for patients for endo. I tell them like, you’re not a $2 beer. You’re a $500 bottle of wine. You have to take your time to go through the whole event. Let’s have some time. Let’s actually get you good and ready before anything goes into anything, right? I tell them that sex is not the act of penetration. It’s the whole day. It’s the text messages and the talks and the I love you’s and the affection that gets you ready to get into that state. It’s not like, oh the kids are sleeping. We got two minutes. That is going to cause significant pain. I usually recommend them using some organic lubricants like Crisco or coconut oil, like organic cooking, frying coconut oil, it glides forever. It’s not going to change the pH in their vagina. There’s a lot of different things that we can do. A lot of the times I tell them to buy pelvic wands or vaginal dilators, but not to use them until they’ve gone to pelvic floor physical therapy and start using them with them. They can do both hot and cold therapy, but they have to have that guidance from pelvic floor physical therapy.

Dr. Amy Stein, DPT

Yeah, I agree because I’ve had so many patients try it on their own. They hurt themselves and they get discouraged. That’s the opposite of what we want for our patients. And then totally agree with exercise is so important, right? But again, is any of the exercise causing the pain? Let’s find exercise that’s not causing pain. And or do they like the exercise that we’re even recommending? Because if they don’t like it, then they’re not going to do it. I do find that figuring out what they like and modifying that exercise for them can be really, really helpful. And I also totally agree with the sexual activity. You need to get the bathtub going with the organic bubbles, things that won’t irritate, things that will calm you, or a heating pad. Doing some stretches together, something to get you in the mood for that $500 bottle of wine for sure.

Dr. Jose Eugenio, MD

Yeah, exactly. It’s very eye opening. It’s very eye opening when I after surgery, I draw it out for patients, I basically come out and I say, this is the vagina. This is the uterosacral. This is where they’re located. I’m basically using a whole bunch of colors, which anybody that’s seen me can tell you like, Hey, I use so many colors on this page so they can differentiate what the endo is, what the endometrium, myometrium, pelvic floor muscles, uterosacral, bulbocavernosus, like everything, right? We talk about all these different things. I think it hits usually the male partners, when they see, this is her uterosacral and you see the difference between this one that’s nice and pink and you see this one that’s all destroyed and scarred. Obviously, if something is hitting this particular thing, you see how red and inflamed it is? Imagine if every time you had sex, somebody would flick one of your gonads. That’s what she feels when she has deep penetration. We talked to them about the Ohnut or things to limit penetration to be more patient with their partners. And I actually I feel proud.

When I tell them and I’m explaining it to them, and they’re like, so I was not helping. I’m like, no, you weren’t. You have to be more patient. But I’ve seen some wonderful partners with some of my patients that are really commendable. Guys or girls that are like, okay yes, I felt it. We modified things so that she was not feeling sad or she’s not feeling that she can’t contribute. I’ve heard some horrible stories in which patients are having such horrible pain with periods, and every time we have sex, I’m in pain for a couple of days but I’m sad because I’m afraid that that he’s going to leave me, or he’s going to go and do something else. They would rather tolerate that pain because of the fear that their partners are going to leave them. Imagine what has to go through the mind of a poor woman that’s in pain, that she’d rather be in pain for a couple of days just so that she can satisfy her partner because she’s afraid of him leaving. The psychological state that you have to be as a woman, in order to allow something like that to happen, it’s disastrous, right? So that’s what we have to do. If when we miss it, these are the things that can significantly affect or have a negative self-image for the patient herself.

Dr. Amy Stein, DPT

Right. Yeah, and education, as you’re saying, is so important because most people don’t understand the depth in which we have to treat the patients and the lifestyle, the mental health part of it. That’s so important. And you mentioned earlier about the pizza. They could be lactose intolerant, gluten intolerant. So really addressing the body as a whole and the person as a whole is so important. That’s why we work so well together, because we’re on the same page.

The Importance of Research in Choosing a Surgeon

Dr. Amy Stein, DPT

Where can patients or providers find you? Website and social media.

Dr. Jose Eugenio, MD 

I’m on Instagram and on Facebook. I have a page on each. Instagram is @drendometriosis which actually also sounds like Dominican Republic Endometriosis. But it was a friend of mine, he’s a plastic surgeon. He said, you should get this name so it means both things, Dr. Endometriosis and Dominican Republic Endometriosis right? I’m like, okay, that sounds like a good idea. She’s like, just do it. Trust me. And it’s been wonderful.

I’m glad that we’re doing well. We’re educating. We’re doing a lot of work talking to a lot of people on Instagram and just promoting good content, good surgeons in different countries. There’s a lot of patients that don’t have the possibility to come and see us in the US. I’ve talked to other surgeons in specific countries, maybe your patient can’t come to the US because of whatever visa reasons or something. Then you have all the resources in other countries and which really great surgeons that you can go and see them as well. People that I already know that are doing a really, really good job because unfortunately it’s hard. For example, something that happened for me recently, I no longer tell patients who to have surgery with. Why? Because I’ve gotten burned a couple of times. You can go see this doctor that’s on the Nook List in X, Y, and Z town. And then they go have some surgery, some stuff gets left behind because it’s complex and they’re put on Orilissa, Lupron, or a whole bunch of other medications. Then their pain does not improve.

I operated on a patient yesterday that had surgery with an endo specialist, not even less than a year ago. She had so much endometriosis. I don’t even know. I don’t want to fathom that they just left it behind. That’s what I want to think. But in 10 months, you’re not supposed to have so much endometriosis return. Deep pockets, deep stuff, ovaries are stuck together. It’s hard for me now, that’s why I send patients to the Nook. Go to Nancy’s Nook and then look at surgeons in your area if you want to, but you have to do your research. You want to have surgery with X, Y, and Z? Talk to 10 or 15 patients that had surgery. Who had surgery with this doctor? Talk to me, give it to me honestly. Right, so that you can make your own decision. Because I’m no longer recommending anybody. I can’t, I’ve been burnt too many times. I’m done. I tried being good and say, no, that’s fine, you don’t have to come. But now it’s like, it’s a different story.

Dr. Amy Stein, DPT

Yeah, it’s a tough place because you want to help them, but yet you don’t. You just don’t know. I had a patient the other day that came to me. We suspect endo. We’re not sure. You may be hearing from her. She actually had gone to my mentor a couple of decades ago and it didn’t go so well. And I’m like, huh? You just never know. You never know. And referring can be a challenge because you get concerned about what could or should happen. I hear you.

Dr. Jose Eugenio, MD

Yeah, I mean, but one of the things that we do is, is we just learn to be brutally honest and transparent with patients, which is why I give them around 30 pictures minimum of their surgery. 10 to 30 pictures, or sometimes 60 pictures of their surgery. I literally take a picture before and after. There’s a lesion of endometriosis. This is the after so you can see how it looked before we touched it, and after, and how big the lesion was. Or how big of a halo and what’s remaining. Because a lot of the times patients are like, I had surgery three years later and they found a whole bunch of endo. I’m like, no, no, no, no. I give them a USB copy of their video if they want it. So that they know, and they can see, hey, that lesion that you had there wasn’t here in the first surgery.

Dr. Amy Stein, DPT

Yeah, and that alone can calm themselves down too. Like, okay, I had it, but it’s gone, or you know, removed.

Dr. Jose Eugenio, MD

Well, I mean, yeah, I never tell them that their endo is gone. We can get it as close to a cure as possible, but there’s always disease that can be left behind that you can’t see the day of surgery. One of my biggest pet peeves is there’s a lot of patients that before surgery, they put them on Lupron or Orilissa or Myfembree or any other of these medications that can be quite dangerous. It can have significant side effects without even knowing if they have the actual disease that these medications are supposed to be treating. So it’s like, I think you have endometriosis. Let me give you this really expensive medication and let’s see if it works. It has significant side effects and if it works, great. But if it doesn’t work, fine, we’ll do surgery. But that’s worse because if it doesn’t work and they’re on the medication, then you get taken back to the operating room with a medication that’s meant to decrease the inflammation that endometriosis causes. You would only be able to really truly see the old, very clear lesions, but the new early lesions of endometriosis may be completely flat or disappeared or you may not see them expressed that much. A lot of the times we see tissue that looks red or inflamed and guess what’s going to happen? It’s going to come out because I don’t know, but then pathology also has to look at it. If you’re giving a patient medication that’s meant to hide the disease, it’s actually a lot harder for the pathologist to say, hey, this spot that you removed, was endometriosis or not? In some of the earlier tissues. It doesn’t make any sense. It’s like going into surgery with your hands in your eyes.

Dr. Amy Stein, DPT

Yeah, it’s not going to work. Well, thank you so much for doing this wonderful podcast. And again, everyone, this is Dr. Jose Eugenio from the Center for Endometriosis Care in Atlanta. And I hope to see you again at the Endo Summit, or maybe we’ll meet in Dominican Republic y hablo espanol.

Dr. Jose Eugenio, MD

That would be great. You know what? Next time I go there, I’ll let you know. I’d love for you to go there and talk to some people about pelvic floor PT stuff. I have a dream to do an Endometriosis Summit in the Caribbean at one point. I just have to convince Sally to go a little bit lower than Florida.

Dr. Amy Stein, DPT

Count me in! Alright, great to see you!

Dr. Jose Eugenio, MD

Okay. Likewise, Amy. Have a beautiful rest of your day.