Endometriosis Foundation of America
Virtual Patient Conference, October 16-18, 2020
Endometriosis 101 - Dr. Goldstein and Dr. Hawkins
Diana Falzone:
And to join us about endometriosis, and really basic 101 endo. And I don't really think there's anything basic when it comes to this illness, but we're going to try. We are joined by Dr. Goldstein, a gynecological surgeon, who herself has endo, with Dr. Hawkins, a minimally invasive gynecology surgeon, who also has endo, to discuss endo 101. Thank you, Dr. Goldstein and Dr. Hawkins for joining us this evening.
Karli Goldstein, DO:
Of course, good to see you guys.
Soyini Hawkins, MD:
Thank you, guys, for having us.
Diana Falzone:
Absolutely. I will let you take it away, but I just remind the audience that's watching right now that we are going to have a Q and A with Dr. Goldstein and Dr. Hawkins, so if you want to submit your questions, please do during their panel.
Karli Goldstein, DO:
Great. So I just made a quick synopsis, and Dr. Hawkins will jump in and out on here as well. And I just wanted to show you some pictures as well. Please note, some of these pictures are graphic. If you're sensitive to this, then you can turn down your screen and just listen to us if you don't want to see any imagery. But I do feel like images are the best way to really portray to patients what's been happening for so long and what really goes on in the pelvis, that pictures really can speak 1000 words. So if you're comfortable seeing them, please watch. So this is a quick synopsis, go ahead to the next slide. So what is endometriosis overall? It's basically endometrium, or endometrial glands and stroma that are not happening inside the endometrial cavity inside the uterus. They're actually happening outside the uterus in different places in the pelvis and even outside of the pelvis, as we heard from some of our great patient advocates speak earlier. So this can happen even along the bowel, the bladder, even up to the diaphragm and up to the lung cavity. And it's a benign process noncancerous, but in rare cases, it can be life threatening, so we don't always like that word, benign. It's not really a great picture of what happens with this disease.
It causes extreme inflammation that is dependent on estrogen hormone. And there's a lot of scar tissue involved, and many patients have painful periods, but not all of them. Some can have painful intercourse, irritable bowel syndrome, infertility. And some patients may have no symptoms, and they just may be having infertility or miscarriage. These symptoms can raise from minimal to very severely debilitating. And it affects young women, teens, reproductive age. And we even have postmenopausal patients, so they are definitely out there. It happens, at least the figures right now, one in 10 women, but maybe more. And in infertility patients can be as many as 50%.
We don't have time in this short lecture to get into all of the different theories of how endometriosis develops, but we'll talk a little bit about it. Go ahead. There's multiple theories of retrograde menstruation, stem cell theory, basically transplant of ectopic endometrium and new angiogenesis and inflammation that can surround these lesions and allow them to grow and actually get embedded deeper into tissue. And most commonly, most women probably have genetic lesions of endometriosis, even from a very young age, and even in infancy, that have been there the whole time and are gradually being stimulated and stimulated, and through puberty and later in life, receive more hormone attention. Keep going.
Yeah. And these are just some pictures of early endometriosis lesions budding. And you can see what's remarkable in these is the surrounding vasculature, little vessels that go to feed each of these. Keep going. And questions that your doctor should ask, or you can bring up are how bad your periods are, if you have ovulatory pain, bladder symptoms, bowel symptoms, other painful symptoms with your period that are correlated hormonally, like leg pain, and which side is really important, left side, right side, back pain, fertility history, if it's pertinent, and any other major health disorders.
And what can we do in the meantime before you get to your provider? You can track these symptoms and when they happen in the month. And there's many apps you can do this with. Next. And there's many different management options, which we'll touch on all throughout this weekend. And most commonly, basically ibuprofen and different kind of pain medications are used at first, and then hormone suppression. We'll talk about some alternative things this weekend, which are great as well. Next. And the only way to truly diagnose endometriosis is through laparoscopy or surgery, which is minimally invasive. And this is diagnosis and treatment at the same time, and we do recommend hopefully someone that's experienced with laparoscopy, an excision specialist that really does this all the time. But you don't need a laparoscopy to have a very high index of suspicious of endo or presumptive diagnosis. Basically, if you have all of these symptoms and a lot of this happening all the time, then really, we can have a very good clue that there's endo there. And so we'll just show you quickly some pictures. You can keep going, This is normal anatomy. Next. These are early lesions of endometriosis. Next. And keep going. These are lesions that are surrounded by vasculature that are coming toward them to feed them. Keep going. Keep going. And these are chocolate lesions. You can see surrounding even the pathway of the ureter from the kidneys to the bladder and entrapping the ureter. And these are lesions all around the bladder and the ovaries. And sometimes these are fertility patients, and none of these lesions are even visible on ultrasound or MRI, except for maybe a deeper nodule or cyst in the ovaries. So you can see why this pelvis, which looks like it has a lot of disease, it's frustrating why sometimes it's very difficult to pick up without, even with the best imaging. So this is some retrograde menstruation and a deep, involved endometriosis with bowel involvement as well. Keep going, Charlotte. And you can see in this top left picture, a frozen pelvis, where the anatomy is so distorted, we can't even see that normal pelvic anatomy that we saw in one of the first pictures. And on the right hand side are diaphragm lesions right by the liver.
Soyini Hawkins, MD:
Excellent. That was a great slide presentation. Thank you so much, Dr. Goldstein. I wanted to add just a few more 101 points that I think are super important and relevant to make sure that we get across about endometriosis, and the early diagnosis of it, especially given that so many of our founders and our collaborators and our host today expressed how long it took them to get to the diagnosis. Generally speaking, it takes a number of physicians and a number of years, even decades at times, as we've seen, for women to actually get the diagnosis. And a lot of that is rooted in the fact that, as Dr. Goldstein stated, the only way to definitively diagnose endometriosis is that laparoscopic procedure. However, when you are going to your doctors and discussing your symptomatology, I try to encourage women all the time to never downplay their symptoms, never downplay their pain, even if it's what they feel may be a vague discomfort. And another point to make is sometimes we have other diagnosis that could be somewhat overshadowing. One of the ones that I find typical in my patient population is fibroids and endometriosis. And their endometriosis is almost nonexistent in early diagnosis, and therefore, sometimes they're lacking in the proper treatment because evaluation somehow didn't end up complete. So along with everything that Dr. Goldstein said as far as tracking their cycles, tracking your pain, being very cognizant of pain, inside of the menstrual cycle as well as at the times in between bleeding, ovulation pain. That pain when you take deep breath could be significant. It could mean that you have something [inaudible 00:09:23] from that back pain that's up near your ribs, or that pain that feels like sciatica that goes into your legs, or that deep back pain that you thought was just from moving, or the exercises that you do. When there becomes a pattern and significance, we don't want to ignore that, so just a few things to add. That was a lovely presentation.
Karli Goldstein, DO:
Yeah. I think it's hard to put all of it into a 10 minute, 15 minute little synopsis, but absolutely agree. And I think that's the nice thing about maybe tracking all of the symptoms and really writing it down. And then if your gynecologist isn't really listening, there's a lot of support groups online and different ways, resources you can find providers that really focus on this, or are interested in it. And it's hard for providers that are doing basically all general OB/GYN, and not a surgical focus necessarily all the time. I think it's easier to miss this or not spend as much time battling it in the OR. Right? Dr. Hawkins, you probably agree too.
Soyini Hawkins, MD:
Correct.
Karli Goldstein, DO:
And I think a lot of patients, they may be sort of [inaudible 00:10:42] for years, even like you were talking about with fibroids, that, oh, you have fibroids. Let's just watch them. Or you have this little cyst, let's just watch it. Let's just watch it. And when things are not ... Fibroids shouldn't really cause pain in most cases, and benign, or PCOS, or polycystic ovaries, these conditions shouldn't really cause pain. And so patients a lot of times, I think, are told, oh, you have PCOS, or you have fibroids. Or, oh, you are just ovulating. You have little cysts, and that's normal. And so unfortunately, when these things are much more severe for you than your friends or colleagues or anyone else you're around, then there's something else going on there. Normal periods should be a day or so of pain, cramping, that's tolerable. You can work through it. There's no issue there. And I think these pains, if they're really stopping you in your tracks, and stopping your job, and causing trouble with bowels and bladders, then it's definitely something to investigate further in my opinion.
Soyini Hawkins, MD:
Absolutely. I think another hidden category of patients are our infertility patients. They may not have what they would consider significant pain, or that pain is the type of pain that they've always had with their menses since menarche, or since starting their menstrual cycles. However, they've been seeking fertility for a number of years, or even gone through actual evaluation by reproductive specialists, and somehow has never really been evaluated fully for endometriosis. I find that subset of patients unfortunately have almost this hidden diagnosis at time with endometriosis. And I don't want them to be forgotten either. So if you're having difficulty with fertility, sometimes those questions and putting the pieces together with your fertility specialist as well as your gynecologist, or your sub specialist, because minimally invasive gynecology is a sub specialty. So sometimes going beyond your routine or general gynecologist and obstetrician is necessary to put all the pieces of the puzzle together.
Karli Goldstein, DO:
Absolutely. I think it's a great point. I think there's unfortunately a lot of patients battling infertility that go through years of treatment, and no one ever really looks inside. And it's pretty amazing when you do look inside. Dr. Hawkins will tell you as well, but sometimes it's just a mess. And you're astounded that every imaging and test has come back normal for these fertility patients. And when you look in and you see what a mess the actual pelvic environment is, and it makes so much sense to you why pregnancy is difficult for this miracle thing to occur, where an egg is picked up by this tube floating around in water. And it's a pretty wild thing that has to happen, and everything be perfect. And so when we always look inside, there's adhesions, there inflammation, there's all kinds of things happening that it makes sense why it would be difficult. And so it seems like, and I know that a laparoscopy is invasive, but it seems like it should at least be in the thinking or the foreground of: Oh, what's happening? Why isn't pregnancy happening? Or why is it harder for me than most people? And we find some of our patients, maybe they just have a little bit of tenderness with the probe on ultrasound, or painful intercourse that just started this last year. Or, hey, those repeat fertility rounds caused trouble. But unfortunately, sometimes we don't get to them until they're almost 40, and by then it's very difficult. We're battling egg years and also all of this at the same time. So I think it's great to think about it early on too.
Soyini Hawkins, MD:
Absolutely. And then one last diagnosis, because I feel like I'm the queen of hidden diagnosis, especially in our endometriosis community because they go many, many years before getting the nail on the head, I call it. But pelvic congestion syndrome, that is another one that I find. Unfortunately, we have a lack in just getting to that diagnosis quickly and efficiently for patients. And at times, it is a sister, friend, of endometriosis and adenomyosis. Pelvic congestion syndrome, which unfortunately is not heavily investigated or studied, or honestly populated, I think probably like I said, it's underdiagnosed in numbers, so it makes it difficult for us to really get a good breadth of what that disease process really looks like. But that's another one that at times patients may have, that may or may not be found on the imaging. And sometimes the timing of the imaging, or again, putting all the pieces together with the actual diagnosis for those patients that may have endometriosis, it may have a component of pelvic congestion, just helps you to really round out. How does pelvic floor physical therapy play a part in it? All of those modalities that Dr. Goldstein went over as far as you options for management, the actual diagnosis does matter. And I'm so excited for this weekend to hear about so many comprehensive options that all women that suffer from any type of pelvic pain, especially endometriosis, have.
I think we have a little bit more time, so fun fact. Yesterday, I had a very, very interesting case. It was a stage for endometriosis, but my first like this was just astonishing. And I've been in minimally invasive surgery for seven years, but saw a lot of endometriosis just because of where I trained, but had a young lady that had peritoneal ascites and removed two liters of endometriosis fluid, just ascites fluid from her abdomen at the start of her case. And she had a very locked in pelvis. So again, her symptom was this recurrent ascites that she had. And of course, eventually she was able to get it drained. And they found that it was endometriosis fluid, two liters worth.
Karli Goldstein, DO:
That's wild. Two liters, talk about endo belly. Right?
Soyini Hawkins, MD:
She woke up with an instant flat belly. She was excited.
Karli Goldstein, DO:
I'm sure, I'm sure.
Soyini Hawkins, MD:
I'm looking to see if any questions came across, Charlotte.
Diana Falzone:
Thank you very much, doctors. I keep getting my mind blown a little bit every time we learn more about endo because it's just a very complex illness. We are getting a ton of questions. I'm going to try to get to as many as we possibly can. But Dr. Hawkins, we have a question saying, "What do you mean when you say minimally invasive gynecology?"
Soyini Hawkins, MD:
Excellent question. So when it comes to obstetrics and gynecology, all of us have four year of training where we learn how to deliver babies, and gynecology as far as dealing with women's health and surgical skills. We all have a basic surgical skillset. And from that, there are many sub specialties. There are some of us that choose to only do high risk pregnancies, that only do oncology, or only do pelvic floor reconstruction, prolapse, urinary incontinence and things of the such, or reproductive specialists. And then there's a subset called minimally invasive gynecological surgery. These are the individuals who've chosen to take an additional usually two years of training, fellowship training, to learn how to do all types of endoscopic surgery, including laparoscopy, hysteroscopy, cystoscopy, and more complex surgical procedures is what this subset of specialists generally do. So like myself, I only do gynecological surgeries, so I've built a practice now that is exclusively surgical. And patients come for consultations usually when they're seeking some type of surgical interventions, or I get referred surgeries that may be on the more complex side, just like Dr. Goldstein and her center of excellence.
Diana Falzone:
Thank you very much for explaining that. And Dr. Goldstein, we have a question from Arline, I hope I'm saying that right, Arline. After having a surgery for endometriosis and still suffering multiple symptoms, painful sex, IBS, pain between periods, frequent urination, et cetera, how do I know if I should go on for more treatment, or if this is just part of living with endo?
Karli Goldstein, DO:
I think it's a great question. And I think we can't get into the specifics of all different patient cases here. We don't have enough time, unfortunately, but I would say that if you're still symptomatic after surgery, we always encourage our patients that we see them maybe 10 days after surgery, again eight weeks after surgery, maybe six months, a year later. We follow up quite a bit. And that's very important to us, how patients are doing and what their symptoms are, and how things are changing. And so I definitely think you should, A, talk to your surgeon or gynecologist about that, these symptoms have persisted. And what type of surgery you had was important, if it's excision of these lesions, or if it's actually ablation of these lesions. Or if they said during the surgery, they weren't able to get it all, but we got most of it. Or we burned some of the lesions. There's a lot of things that can be investigated a bit further here, so I would say first talk with your surgeon. And if you feel like they're dismissive, or you want a second opinion, then I think that's always a valid point as well.
Diana Falzone:
We have a question from Antoinette. How can I reduce endo belly?
Karli Goldstein, DO:
Great question. So I think that a lot of our patients and a lot of patients with endometriosis frequently have a low level of inflammation happening, or a high level of inflammation happening. And so we do find a lot of patients benefit with even not necessarily a dietician, but following a lower inflammatory diet, decreasing sugar and carbohydrates that convert into sugar are very pro inflammatory. And some patients benefit from gluten free. There's a lot of different diets out there. I would say that there's not one perfect one for endo. But I do think that it's nice to do sort of like a clean, low inflammation diet, and process of elimination with allergies and food sensitivities, and try to find sort of what makes you inflamed. Not everything is endo, right? So if you have very good surgery and you're feeling great, but then you're still reacting to certain foods, it doesn't mean that that's endo back. So it can be that you just have reactions to certain foods. And I think that our patients in general are a little bit more sensitive with what they eat, and they know things that they'll react to. So some patients follow low FODMAP diet, some follow low inflammatory. I think there's no one perfect one, but I think there's great guidelines out there on what we can start with and then work from there.
Diana Falzone:
Okay. I have one final question that we can get to right now. And then again, please send your questions to us, so that we can get to them in the near future because there's just a lot. We're getting a question. What exactly, and this is coming from several people, what exactly is pelvic congestion syndrome, Dr. Hawkins?
Soyini Hawkins, MD:
Sure. So pelvic congestion syndrome is actually when there is engorgement or filling of the vessels that actually feed your pelvic organs, such as your ovaries, what we call the gonadal vessels, those are the ones that are usually involved, but also your uterus. So those individuals have this engorgement. Sometimes it can be hormonal. We all somewhat have an engorgement prior to menses. But with pelvic congestion syndrome, it's pretty ongoing. These individuals usually have symptoms that are similar to endometriosis when it comes to the pain and pelvic syndrome that they have. They can be just with menstruation. Sometimes they're outside of the time of menstruation. A lot of these individuals will wake up with very, very full feeling pelvises.
They can have what we typically would call the endo belly, where they have significant and severe bloating of their abdomen. Their pain usually progresses in severity throughout the day, and improve when they're recumbent or laying flat at night. So it's again, another one of those diagnosis that are what we call on our differential diagnosis, that unfortunately we don't learn a lot about in our just initial residency training. So it's out there on that spectrum because as Dr. Goldstein said, not everything is endometriosis. And we want to be able to look at our women and our patients as case by case individuals when we're coming up with these diagnosis, so it looks very, very similar to endometriosis, extremely similar.
One of the differences, however, is sometimes it can be picked up on imaging. And I, a lot of times, will actually engage my radiologist or my interventional radiologist to specifically look for it with MRI focused imaging.
Diana Falzone:
Again, that's something I've only heard a little bit about, but to get a definition and to understand and like, "Oh, wait a minute. It resonates," because you're like, "Can there be something else going on?" So I think it's important, like you said, for them to have a greater awareness of things so that when ... And we're going to talk about this later, about advocating for yourself throughout the weekend, when you go to see your doctor. That's coming up soon, because these are important questions to ask. Could it be this? Could it be that? And like you said, be as specific as possible because even the smallest symptom might be part of the puzzle.
Soyini Hawkins, MD:
Absolutely.
Diana Falzone:
So thank you both. Thank you, Dr. Goldstein, Dr. Hawkins. And again, we are going to do our best to continue to answer the questions as they come in and [inaudible 00:24:54]. The voices are being heard.
