With the blur of all the “-osis” “-eosis” and other terms surrounding pregnancy complications and the many overlapping symptoms women might experience on a monthly basis, it can be hard to know when you have an issue that might make having a baby more difficult and, more specifically, what that issue actually is. Today Dr. Michael Silverstein, a gynecologist at MFM, joins us to talk about everything endometriosis, from symptoms to diagnosis to prognosis.
“Endometriosis” – with Dr. Michael Silverstein
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Dr. Nathan: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB-GYN and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman,” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness. Mike, welcome back to the podcast. How you doing?
Mike: I’m doing great. It’s a pleasure to be here. And a rumor has it, there’s been a quarter of a million downloads of the healthy women podcast. Is that a fact?
Dr. Nathan: Yes, we have had over 250,000 downloads of this podcast in two-plus years, which is 249,999 more than I’d expected when we started because I figured that Mikha [SP] would listen to the first, and that was about it.
Mike: I think you had high hopes. This is way above high hopes. That’s quite impressive then. I could tell you that my family and friends have been downloading them on a regular basis and giving me feedback, and it’s all been positive. So, great work. Keep it up. I’m just happy to participate. I’ve done this a couple of times before, and I’m looking forward to my ongoing participation in healthy women.
Dr. Nathan: Well, thank you for doing that. We appreciate having you as a guest. As you said, you’ve done it before, and you seem to get high ratings amongst the listeners. So, glad to have you back. And we’re gonna be talking today about endometriosis, and then probably right afterwards, the next one, we’ll talk about adenomyosis. And I, sort of, put these two together because, well, number one, they, sort of, sound alike, and people frequently confuse the two, and there’s some overlap. But these are the, you know, -osis, -eosis ones, endometriosis, adenomyosis. And these are pretty common, I would say, gynecological problems, or complaints, or issues, however you wanna refer to them. And since you are the GYN extraordinaire, thought we’d turn to you for some advice and some info on these topics.
Mike: Happy to provide whatever information I can.
Dr. Nathan: So, let’s start with endometriosis. How do you explain to your patients or family friends, if they ask you, “What exactly is endometriosis?”
Mike: Well, it’s actually, the lining of the uterus is actually outside of the uterus. The uterus is a large muscle. If you make a fist and look at it, that’s, sort of, what the uterus is sized. If you open your hand and look inside and you are wearing a glove, the inside of the glove is the lining of the uterus. That’s the endometrium. Every month, it grows, it awaits an implantation for a pregnancy. And then in the absence of an implantation, it sloughs, and that’s the menstruation. In endometriosis, those glands have somehow gotten outside the uterus. And there’s so much controversy over what causes that, where people born with the lining of the uterus outside, the uterus did glands from the lining of the uterus leave via the fallopian tubes. But for whatever the purpose, the glands that are outside the uterus now, whether they’re on the tube, on the ovary, on the bladder, on the bowel, on the lining of the abdomen and pelvis, which is the peritoneum, it grows and awaits, obviously, hopefully, an implantation. And in the absence of an implantation, its sloughs, but instead of having a channel or an egress of the cervix, it sloughs into the peritoneal or abdominal cavity and causes dire pain. And so that happens on a cyclic monthly basis.
Dr. Nathan: So, basically, the inner lining of the uterus, which is supposed to be located in the inner lining of the uterus, finds its way outside somehow, like you said, and every month, the hormones that normally act upon the inner lining of the uterus now are acting on these, sort of, ectopic glands, these glands, they’re somewhere where they’re not supposed to be and just causing inflammation and pain. How would someone know that they had this?
Mike: That gets to the issue of how do you screen for it, and how do they present? I’ve always spoken to students and residents with the Silverstein’s five questions: who gets it, how does it present, how is it diagnosed, how is it treated, what’s the prognosis? I use that for virtually all pathologic and disease states. So, the who gets it is obviously women. But since it’s something that typically starts with the inception of the menses, which in girls tends to be at about age 12, there tends to be microscopic amounts of it. And so it would be very rare for a teenager to present with this. But monthly, monthly, monthly, the tissue will accumulate and aggregate. And most women will not present with symptoms in this until their 20s or 30s when enough tissue has accumulated. Sometimes, their presentation is pain. Sometimes, it’s infertility because these glands that are covering the lining of the peritoneal cavity are either blocking or irritating the tubes or the ovary. And so it’s incumbent upon the physician, hopefully, a gynecologist, to screen for this.
The how does it present is absolutely the most important. Many women come into the gynecologist with pelvic pain. And pelvic pain, many people will point their finger, “Aha, it’s an infection. Aha, it’s endometriosis. Aha, aha, aha.” But typically, endometriosis will present in a certain way. If you’d imagine what’s going on in the peritoneal cavity, during the menstrual cycle, with ovulation, the egg comes out of the ovary, lands in the fallopian tube looking for sperm, a little bit of fluid comes out of the ovary and spills into the peritoneal cavity. So, many women will get a little sensation when they ovulate. If there’s endometrium there, it’s a more overt response.
So, an ovulatory severe discomfort might be a hint, but the real giveaway is that the crux of the pain happens with the menses because that’s when the lining is detaching in the peritoneal cavity. So, mid-cycle pain, often fairly quiescent for the balance of the menstrual cycle until the menses, and then increasing pain, pain perhaps starting in the teenage years, getting worse in the later teenage years, getting severe in the 20s. And sometimes, these women in their 20s or 30s will be bedridden on anti-inflammatories and narcotics with their menses and then have chronic pelvic pain as a result. But typically, there’s a course that it takes that increases in severity over years.
Dr. Nathan: And so if someone has those symptoms and you are suspicious it might be endometriosis, first thing is, how common is it in general? Meaning, sometimes when there’s someone who has symptoms that are suspicious as something extremely rare, we’re like, “All right, you know, it sounds like that, but the odds are, it’s not that.” Is endometriosis like that? Or is it something that’s common enough that usually, if you think she has it, she has it?
Mike: The problem is there’s not a gold standard for the diagnosis. And in order to understand the frequency of something, you have to have a diagnostic test to how often it exists. So, the overall assessment seems to be roughly 10% of women have endometriosis. Does that mean 10% of women have chronic debilitating pelvic pain? Absolutely not. Many times, this is an incidental finding when you go in for a cesarean, or you go in for a laparoscopy, or it’s a finding on some other diagnostic test, you go in for an appendectomy or another place where they look of the lining uterus and go, “Oh, you have endometriosis.” And so many times, it’s asymptomatic. And how does it present? How is it diagnosed? That’s a real dilemma. You can certainly diagnose the manifestation of untreated endometriosis. And that’s where these secretions, these glands that have sloughed, coalesce and form a mess that we call an endometrioma. Sometimes they’re attached to the ovaries.
Sometimes they’re attached to the fallopian tube. Sometimes they’re elsewhere in the peritoneal cavity. And many different imaging modalities, ultrasound, MRI, CT canal diagnose endometriosis, but when it’s just endometriosis, it really requires visual confirmation. MRI is suggestive of it, ultrasound can be suggestive of it, but typically, if you have a patient that presents exactly like this, the physical exam is also quite important, and hopefully, the physical exam is performed by a skilled gynecologist, is typically in a gynecologic exam. You do an inside exam, you nudge very gently on the surface with two fingers, with the other hand, you’re touching the abdomen also very gently, and you try gently to loft the cervix and uterus up to the receiving hand on the abdomen, that in gynecology is called the bimanual exam. And in most women, you can gently loft the uterus up, feel it with the abdominal hand, and it has mobility and lacks tenderness.
Sometimes you can feel lateral on both sides to the uterus and gently feel the ovaries. Sometimes not feeling the ovaries is a good sign. It means they’re not enlarged. But the fact that somebody has a mobile and non-tender uterus certainly endorses the absence of stuck-on glandular tissue or endometriosis. So, when a patient describes this type of pelvic pain, and you have these physical findings, it mitigates against endometriosis. If, on the other hand, you touch gently the cervix, your receiving hand fails to receive the uterus, or there’s exquisite pelvic pain, there are a number of things in your differential, but certainly, endometriosis is included if the uterus is frozen or locked into the pelvic cavity.
Dr. Nathan: And so if someone has, again, the symptoms of endometriosis and lets an exam that’s consistent with endometriosis, is it necessary to do surgery like a laparoscopy to diagnose it? We’ll talk about treatment later, but just in terms of diagnosis, are you comfortable telling someone either, “You have it,” or, “I’m pretty confident you have it, and I don’t think you need surgery to confirm it?”
Mike: If you’ve satisfied the first few questions, the who gets it, the how does it present, how is it diagnosed, or at least how is it suggested and all three are certainly consistent with endometriosis, there are several relatively innocuous steps you can take to see if it alleviates the discomfort. Perhaps some of these are treatments, as we’ll get into shortly, but certainly, if they respond to these treatments, you can avoid surgery. As a gynecologic surgeon, I’m not eager to operate on every patient just for the diagnosis. When a patient has chronic debilitating pelvic pain and they’re in the house with narcotics every single month, I’m much more comfortable doing a diagnostic test to confirm because not only… I’m sorry, I’m lapsing into treatment. Because sometimes with that diagnostic test, you can do operative laparoscopy, and you could remove endometriotic implants and sometimes reduce their pelvic pain so it would be both diagnostic and therapeutic. But clearly, somebody who has the symptoms, who has the presentation, who has the physical findings, it’s quite reasonable to try a number of different modalities before you go to surgery.
Dr. Nathan: Yeah. I think one of the tough things about endometriosis is in medicine, one of the things we always have in our brain is, “Okay, so mild disease, you know, is mild, looks mild, presents mild, moderate disease, all the same thing.” But for endometriosis, it’s a little bit off, meaning some people have crazy severe pain. And ultimately, you know, you do surgery in them, and you find, like, two little spots of endometriosis. And was that the cause of their pain? Was it not the cause of the pain? I mean, they have the disease, or they have the condition, or someone has very little pain, and you’re doing a laparoscopy and you see crazy endometriosis, all the scar tissue. And why would one person have a lot of pain and one person not? The same thing with infertility. A lot of women present, you know, with issues with trouble getting pregnant, and then they’re diagnosed with endometriosis, but they had no symptoms. And so you’re trying to figure out, “Well, is this the cause of their fertility issues or is it just a coincidence?” And it’s hard to know because even though there is what we call staging for endometriosis, you know, stage one, stage two, stage three, which is how it looks on laparoscopy, it doesn’t really correlate with their symptoms of their fertility. And that’s kind of frustrating as a doctor, but also for patients who really, they don’t always get the answer that they’re looking for because it doesn’t always line up as nicely intellectually as you would like it to.
Mike: I agree 100%. And I’m reminded about fibroids. You know, people will come to you with infertility, and you do a sonogram and you find fibroids. And somebody goes, “Aha.” Or you have pelvic pain, and somebody finds fibroids, and you go, “Aha.” But, you know, 40% of women have some amount of fibroids, but is that what we call in medicine a red herring? Is that just a representative of some other process that’s totally unrelated? I have every confidence that if you find endometriotic implants, they contribute to the pelvic pain. Can you attribute to small endometriotic implants to chronic severe pelvic pain? No. There’s a lot of overlap with so many other aspects of pelvic pain, one of which is adenomyosis, which I hope to be able to speak to about one point, infections, vascular abnormalities, muscular abnormalities, bowel pathology, bladder pathology. You know, there’s tremendous overlap. So, you have to avoid the aha moments in medicine because even though endometriosis is pretty nasty to find, it’s not always the ultimate demon with infertility and pelvic pain.
Dr. Nathan: So, let’s say you have someone who either you strongly suspect has endometriosis, or they did have a diagnostic laparoscopy that confirmed it, but either way, you decide you wanna treat them for endometriosis. How do you go about the treatment, sort of, you know, stepwise?
Mike: Well, clearly, the problem is menstruation. The obvious problem is that they’re sloughing the glands of the lining of the uterus into the peritoneal cavity. And you have to avoid that occurring. In order to avoid that occurring, you have to stop them from menstruating. In order to stop them from menstruating, your number one tool are hormonal treatments. One the most commonly used are birth control pills, combination birth control pills that have estrogen and progesterone. Those work by preventing the pituitary from releasing the hormones that cause ovulation and, therefore, menstruation. They reduce the amount of menstrual flow, and therefore, attenuate or weaken the amount of glands that are released. You can sometimes use these birth control pills on a continuous basis for two or three cycles at a time. And that will prevent them or make them menstruate less often. For patients who aren’t tolerant of estrogens, you can treat progesterone only. Progesterone IUDs reduce flow that comes from the uterus, and systemic progesterone may be able to reduce flow that comes from the lining of the uterus.
When those, or if those have failed, you may have to go a step higher and work on the pituitary gland that releases the hormones that cause the ovulation and mensuration. The problem with those medications, the ones that prevent that from happening, if you’re shutting off the hormones that come from the pituitary, you’re making the patient functionally menopausal. And that often, especially in young women, causes tetralogy of symptoms that are really uncomfortable, vaginal dryness, hot flashes, mood instability, insomnia, and really not designed for a long-term use. So, quite often, when these are really severely symptomatic patients who haven’t responded to combination birth control pills, sometimes a short course of the ones that work against the pituitary, you relegate them to surgery where you can mechanically reduce the endometriotic implants.
Dr. Nathan: The medications that affect or act upon the pituitary directly, I know that sort of the “older one” is something called Lupron, which is this GnRH agonist, which is the one that really makes you menopausal. There’s a newer medication, the antagonist, which is now used for endometriosis. I think one of them is Elagolix. Is that something that’s used a lot? Is that effective? Do you have a lot of experience with that? Or is that more, like, pain specialists who prescribe that?
Mike: I have not used that personally or professionally. It actually has the exact same effect as the agonist. And it sounds odd that an agonist and an antagonist work the same way, but if you briefly, just to think about how the pituitary works, it has a very limited number of receptors for the stuff that makes it generate its hormones. And so pulses of stimulating hormone allowed to release those hormones. If you bathe the pituitary in that hormone, it occupies the receptor, initially you get a stimulatory effect, but then it blocks the receptor.
The antagonist works exactly the opposite. It immediately blocks the receptor. But both have the same cumulative effect. Both will make the patient functionally menopausal because it blocks the pituitary secretion. So, whether it starts with a stimulation and ends with the blockade, or starts with the blockade, the same end result is that there’s menopausal symptoms that are generated. Concomitant to the symptoms are potential for bone loss, potential for cardiac issues because estrogen is somewhat protective for the heart. And so they should be used with good judgment and meticulous care.
Dr. Nathan: Yeah. And I think also one of the difficult issues with endometriosis is pretty much the medications you mentioned, all of which are really not something that’s gonna help someone who’s also trying to get pregnant, right? Because they’re all either birth control or making someone functionally menopausal. So, they might be helpful for someone who’s just trying to control her pain. But for someone who’s also trying to get pregnant, or one of her issues is infertility as well, they don’t work, obviously. They’re not gonna be helpful. And they may need to go and have surgery, but the surgery is not…it’s not a panacea. It doesn’t always work. What has been your experience with the effectiveness of surgery for treating? Let’s just start with pain related to endometriosis.
Mike: Quite variable. For the most part, when they have significant findings on laparoscopy, there’s a huge relief from the debulking or the removal of their preponderance of tissue that’s found when done by a skilled surgeon. And I emphasize skilled surgeon because these endometriotic implants can not only be on the uterus, and the ovary, and the fallopian tube, but also on the small intestine, on the large intestine, on the walls of the peritoneal cavity where the ureter tubes that drain from the kidney to the bladder are.
And so there has to be real meticulous care when you do these types of surgeries. And the vast majority of patients who have a large load of endometriosis have enormous relief from this. But unless something is done shortly after to reduce the burden further, they will have a transient relief. Since I’ve mentioned that this often happens with menarche, the beginning of the menses and your teenage years, and often doesn’t present till your 20s or 30s, you might be able to buy the patient a significant amount of time. On the other hand, they may need a subsequent surgery to reduce the pelvic pain.
Dr. Nathan: Yeah, endometriosis, it’s tough because they also tend to have a lot of scar tissue. And if they have endometrioma, the surgeries are quite complicated potentially. And so it’s one of these situations where you really try to avoid surgery as much as possible, but some people just need surgery for relief. And it’s a really tight balance. So, not only do you need a skilled surgeon, sort of, technically, you also need someone very experienced who’s gonna really help you decide if surgery is the right way to go because it might be, but it might not be.
And so you don’t want someone who just operates on every person under endometriosis because that’s probably too much, but you also might need someone who does it enough that they’re very good at it. And that’s a tight balance. And there’s definitely people who specialize in this and do this predominantly. And I would encourage anyone who’s possibly having surgery for endometriosis to make sure it’s done by an expert because that could really be…again, it’s tough to decide who needs it and who doesn’t, and when you’re in there, how to actually do it to achieve the best and safest outcomes.
Mike: And also to remember that surgery generates scar tissue. And there are patients that have laparoscopic procedures, whether it’s appendectomy, whether it’s for an ectopic pregnancy. For whatever non-gynecologic indication it is, sometimes, as a result, they have pelvic pain from scar tissue. So, operating for pelvic pain is sort of like fighting for peace. It sometimes hurts you in the long run. So, it’s not an ultimate cure. The ultimate cure for endometriosis is pregnancy or menopause because, in both those situations, there is an alleviation of menstruation. And sadly, for patients that have chronic debilitating pelvic pain, sometimes making them menopausal, whether it’s medically or surgically, is required rather than leaving them in their house on narcotics for one out of every four weeks of every month.
Dr. Nathan: Yeah. And I think this is a great review of endometriosis, and it’s something that comes up a lot. And I think for our listeners, you know, if you’re someone with pelvic pain, particularly that comes with your cycles, and as you said, maybe a slight amount mid-cycle, it’s important to get checked out. A, you know, you want something that might relieve the pain, B, maybe something that might make the endometriosis a little better, and, C, you may need to check, you know, are there gonna be issues with fertility or not if you haven’t tried to get pregnant yet. And it is something that is not a simple diagnosis, and it’s not a simple fix, unfortunately. And it could be something that’s very significant for a long time, but could also be something that’s insignificant for a long time. And you really wouldn’t know unless you get it checked out and see what’s going on.
Mike: I concur. That was an excellent summary.
Dr. Nathan: Wonderful. So, Mike, thank you for helping us go through endometriosis. And we’re gonna move, in our next podcast, to adenomyosis, which sounds the same, but is not the same.
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