Endometriosis: a Painfully Common & Scarcely Discussed Aspect of Women’s Health

Dr. Arnold Advincula is the Chief of Gynecologic Specialty Surgery here at Columbia, and a leader in minimally invasive surgery and robotic surgery with extensive experience in patients with endometriosis. He has published and taught extensively in the area of minimally invasive surgery as well as developed surgical instruments in use worldwide. Dr. Advincula has extensive experience in treating complex and challenging cases of endometriosis, uterine fibroids, and pelvic masses.  

Dr. Advincula joined Dr. Hyesoo Lowe on an episode of Columbia Surgery’s podcast Conversations and Curbsides. The two doctors covered topics related to endometriosis, including its symptoms, evaluation processes, fertility issues, and endometriosis treatments, both surgical and non-surgical.

The following is a transcription of the discussion, and is lightly edited for context and clarity.  

Jump to a Section: 

What Is Endometriosis?

Dr. Hyesoo Lowe:

There's so much about endometriosis that many people don't know a lot about, until they have it. And so we'd love to dispel any myths or clarify a little bit more about what it is. 

So what is endometriosis and what are the symptoms that it causes?

Dr. Arnold Advincula:

Sure. Well, in the simplest terms it is really ectopic endometrium. It's the tissue that's found within the uterus that's normally shed month to month, that endometrium. It's found outside the uterus in other parts of the body, typically in the pelvis.

To be technical, it's finding endometrial stroma and glands outside of the uterus and it implants in different parts of the pelvis. And so you can find it along the covering of the pelvis, you can find it in the ovaries, and you can also find it in remote areas. It can involve the bowel, the bladder, we even have cases where it's found in the lungs. So it's an interesting disease in that it's not necessarily confined to the pelvis, but it is a disease of the reproductive organs.

Dr. Hyesoo Lowe:

So what are the symptoms that it would cause? How would you know you had it or why would it be an issue?

Symptoms 

Dr. Arnold Advincula:

This is certainly one of the things that I think makes diagnosing endometriosis often complicated. And that's because a lot of the symptoms overlap with other conditions. But classically, a patient will complain of menstrual pain, severe cramping when they're on their period. Often a classic hallmark to that is that the pain is just progressively worsening over time.

A lot of women can have menstrual cramps, but often the menstrual cramps associated with endometriosis progressively worsen over time. Usually they're refractory to things like taking an anti-inflammatory like a Motrin or a Naproxen, or Aleve. 

They don't normally respond to birth control pills after a while. 

And so when you hear that history, that should make you think, I wonder if I have endometriosis. But also patients can sometimes complain of pain with intercourse. They can present with infertility issues. They may also show up to the office because they have a mass, and it's because they have endometriosis involving the ovary, for example.

And in the cases where it goes beyond the pelvis, you can have involvement of, like I said before, the bowel or the bladder. And if that happens, you're going to get symptoms like problems with your bowel movements. Sometimes patients have blood in their stools. Same thing with the bladder. You can have bladder pain and blood in your urine.

So all those things. 

And some of those are extreme cases, but you really need to start thinking, could this be a diagnosis of endometriosis? Especially if they have chronic pelvic pain, and it's been going on for a while and it's getting worse over time.

Diagnosis

Dr. Hyesoo Lowe:

So pain seems to be a main hallmark of what to look for.

Dr. Arnold Advincula:

Absolutely. I would say that the two main avenues of how patients present to doctors is usually pain, and the other one is that it's infertility, they don't have any pain. But in the process of working up an infertility issue, all of a sudden it's discovered that they've been carrying this diagnosis of endometriosis.

It's not unusual to have women with very few symptoms or no symptoms. And in fact, the interesting thing about endometriosis is that the degree of disease present does not always correlate with the amount of symptoms you would expect to have. You can have a lot of it and have no pain. You can have a little of it and have a lot of pain.

So again, it's a very fascinating disease from that perspective because it doesn't always behave the way you think it would.

Difficulty of Diagnosis 

Dr. Hyesoo Lowe:

Interesting. I imagine it gets diagnosed a little bit slowly because people probably don't realize what's normal and what's abnormal. Maybe they have a little bit of PMS, they have painful periods, they live with it for a little bit and then it just gets to be too much. And then so they get evaluated.

Dr. Arnold Advincula:

You hit the nail on the head. 100%. One of the biggest criticisms of how endometriosis is managed is that on average it's eight to ten years from onset of symptoms before women are often properly diagnosed.

And again, that's because it overlaps with so many other conditions. Sometimes people have bladder conditions or bowel conditions that are not related to endometriosis, but they have symptoms that are similar. And so the diagnosis is often focused on those organ systems, and they forget that, well, maybe this might be also a case of endometriosis.

And so sometimes it's not diagnosed for a while and then the disease has progressed all that time. So that's one of the difficulties. That's why we're always advocating really to see people early on, allow people to work that up. Even if the workup ends up being negative, at least you're not missing something early on.

Evaluating For Endometriosis

Dr. Hyesoo Lowe:

And so what is the evaluation for endometriosis?

Dr. Arnold Advincula:

Well, typically it's a very good history. You do a good physical exam in the office and that typically is a pelvic exam. Sometimes you'll get a rectal exam as well with that, depending on the patient's symptoms.

If there's a concern that something's palpable then you'll get a pelvic ultrasound. And if the pelvic ultrasound is not helpful or if it suggests something else, then often we'll add on a pelvic MRI which gives us a lot more detail. It's a very good diagnostic tool for picking up involvement of the ovary or what we call deeply infiltrative endometriosis. So that's a very useful tool for that.

And then if we're still unclear, then laparoscopy in most of our literature is really the gold standard. Where you take a little telescope and we go in through the naval, and we take a look inside and then we diagnose it with our own two eyes. And we either do that visually or we visually diagnose and get a biopsy to confirm what we see.

And of course we can also treat it by the same modality. So when we're in there, we don't just look at it, we definitely want to treat it at the same time.

MRI & Ultrasound Imaging

Dr. Hyesoo Lowe:

When you do imaging like MRI, is it pretty obvious? Is it a mass or how large tissue are we talking about?

Dr. Arnold Advincula:

Well, it's subtle. It can be subtle and it can be very obvious. So if it's like what we call them “chocolate cyst” in lay terms, when we have what we call endometrioma, which is endometriosis involving the ovary, we call it “chocolate cyst” because it looks like chocolate syrup is inside the ovary. You can see that very well usually on ultrasound, but really well on an MRI. You see this big mass.

But when we talk about things like nodular disease or deeply infiltrative endometriosis, those are subtle findings that you train yourself to look for and look at over time. But often that can correlate with your exam too. 

Often you feel things on exam, you use the studies as we do in medicine to help us either confirm our suspicion or to refute something that we see.

But the MRI is very helpful with a history and a physical exam or ultrasound history, physical exam, and then you decide what you want to do. If you're going to do something surgically, which isn't always necessary. But certainly it is the gold standard for how we confirm that somebody has it.

Unknown Causes Of Endometriosis

Dr. Hyesoo Lowe:

And what sorts of things cause endometriosis? Are there environmental factors, behavioral factors? Is there any known cause?

Dr. Arnold Advincula:

Well, whoever figures that out's going to get the Nobel Prize! There are a lot of hypotheses behind what causes it. 

One of the classic ones is something called “Sampson's Theory.” And that's because when women menstruate, they don't always just menstruate out the vagina in one direction. Sometimes that menstrual blood regurgitates backwards through the fallopian tubes. And so one theory is that you're now spilling this endometrial tissue into the peritoneal cavity of the women's pelvis, and that this is then implanting and causing endometriosis.

But the interesting thing is almost all women do that, but why is it that some women develop endometriosis and others don't?

And so this is where you alluded to this, could this be autoimmune? Is there something about certain women, their biology that allows it to set up? Is there some sort of immunologic issue? And there are other reasons that people throw out there. One is that it's just spread by lymphatics or by blood. That would explain why sometimes you find it in the lungs. Why is it in the lungs?

But there are a lot of theories, but not one that's really the lead theory.

Genetics

Dr. Hyesoo Lowe:

Does age play a factor or could it be genetic, obesity?

Dr. Arnold Advincula:

There's definitely some genetics involved. Age doesn't necessarily play a factor? If anything, we certainly can see it in adolescence. We can see it as early as teenagers, and so that's why we are also trying to educate people that if you have daughters who are young and having a lot of issues with their menstrual cycles, that you should seek consultation with a gynecologist who understands the biology of this disease so they can pick it up early if it is something that's happening in the adolescent years.

Benefits Of Early Intervention

Dr. Hyesoo Lowe:

Does early intervention help in the long run?

Dr. Arnold Advincula:

Honestly, I do believe that early intervention helps in the long run. 

One is you get a diagnosis early, so then you're not chasing your tail wondering, well, what is this? Trying things that don't work, letting the disease progress without an intervention. So from a diagnostic perspective, it absolutely help.

Also you're catching people before the disease could potentially harm their fertility potential. The one thing we often see is when patients are diagnosed very late, their fertility's often compromised or it really makes it difficult for them to get pregnant.  And so these are the types of things that you want to catch early. 

And with the pain, the longer people exist in a pain state the harder it is to really get control of that pain. So it's important.

Treatments –  Non-Surgical 

Dr. Hyesoo Lowe:

What are the kinds of treatments, surgical and non-surgical?

Dr. Arnold Advincula:

Well, the traditional basic first-line therapies that are what we call the “conservative medical management approach” are typical things like birth control pills, hormonally-oriented type therapeutics that affect the ovarian function so that we can decrease the influence on these lesions, which are very responsive to what the ovary puts out.

So things like birth control pills, progesterone hormones. There are some drugs that we give that make people feel like they're in menopause, that's another treatment. And then we also utilize anti-inflammatory drugs, like your Motrins and Advils and Aleves, to try to help with the inflammation as a result of the endometriosis.

So those are traditionally the basic things that we'll do from a conservative medical management perspective. And there are a lot of new drugs that have come out over the last couple years. So the armamentarium is getting better.

When patients fail that or they have findings that clearly indicate they should have surgery, then that's where we go to laparoscopy or robot-assisted laparoscopy to really not only diagnose but to treat the various presentations that we see in gynecology.

Surgery

Dr. Hyesoo Lowe:

So if endometriosis is endometrial tissue or uterine tissue in places where it doesn't belong, is the surgery to remove those areas? And then how do you know which of the ones, if there are more than one location, are causing the problem?

Dr. Arnold Advincula:

Well, the key definitely is excision. There's a lot of discussion, and I know patients often read about this on the internet: is it excision or is it ablation? There are a lot of people who just cauterize or burn the lesions. But what we've found over time is that the best responses are when you can excise the actual lesion.

One, it gives you a biopsy sample to confirm it, but number two, you ensure that you're getting it, especially if it's deep. We always talk about the tip of the iceberg. So you want to make sure you get the whole iceberg out.

It does take a trained eye to understand the various ways it can look when you look at it in the pelvis. So the goal is always to try to eradicate as much of the disease as possible. But the caveat is you don't want to be, I always say this to folks, you don't want to be the surgeon who's the bull in the China shop. You have to balance what you do surgically with the patient's future desires.

So if she wants future fertility, then I have to balance how aggressive I am with the resection, but also not destroying somebody's fertility potential. So there's a lot of art to doing this, and it's not as black-and-white as some people would make it out to be.

The most important thing is recognizing it, diagnosing it, understanding the patient's goals, doing the appropriate surgery, and then following it up with some sort of postoperative medical regimen that can help keep things suppressed, and keep them in a good place. If they want to have pregnancy or pursue fertility then you obviously have to stop some of these things, but it requires a lot of customization based on what the patient wants.

Guidance

Dr. Hyesoo Lowe:

So what guidance would you offer women who are living with this or who might potentially have symptoms attributable to endometriosis?

Dr. Arnold Advincula:

Well, the first thing I would say is, number one, you don't have to live with this. And I'm always saddened by the fact that there are a lot of women who go through life and just continue to suffer, when it's not necessary.

The first thing I would say is go see a gynecologist if you can. See a gynecologist who has expertise or a focus in endometriosis, even better, just because they're going to be more attuned to not only the symptoms of endometriosis, but also things like irritable bowel, interstitial cystitis, chronic pelvic pain syndromes, things that can overlap with endometriosis. And let the workup take place to try to see what's going on.

But that's what I would do. And the sooner you recognize that there are symptoms that may be suggestive of endometriosis, the sooner people go and seek an evaluation, I think the better off they'll be.

And certainly people shouldn't just sit on the sidelines and suffer. There are treatments that are available and there are a lot of things that we know.  

The other thing is that it may not even be endometriosis. It could be another condition. It's just that nobody's thinking about it and they just haven't kind of put that on the list of things that they should be thinking about.

Dr. Hyesoo Lowe:

Thank you so much for that, that's really helpful. 

This seems to be a type of condition that doesn't come up and announce itself. You have these symptoms that are somewhat non-specific, but if they're getting worse I think that's great advice. Get evaluated and see if you have it, because there's treatment available. 

Well, thank you so much for joining us today.

Dr. Arnold Advincula:

Well, thank you for having me.

Further Reading 

Don’t miss an update on news and content from Healthpoints, the blog from the Department of Surgery at Columbia