At the Forefront Live: Endometriosis & Uterine Fibroids

Coming up on At the Forefront Live, fibroids and endometriosis can cause women severe pelvic pain and heavy bleeding. But they're very different conditions. Today, we'll talk with three of our gynecologic surgeons and answer your questions. Also, we will hear from a patient and learn from her experiences. That's next on At the Forefront Live.

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Welcome to UChicago Medicine At the Forefront Live. This is your chance to ask our experts your questions by typing in the comments section. We'll get to as many as possible in the next half hour. And remember, this program does not take the place of an actual visit with your physician.

Joining us today are three surgeons. We have Dr. Shari Snow, Dr. Laura Douglass, and Dr. Sandra Laveaux. We'll also hear from a patient today. Welcome to the program.

Thank you.

Thank you.

Thank you.

Let's just get right into it. It's interesting. There was a recent article that said that endometriosis was the third most-Googled health question of 2018. First of all, why don't you just explain what endometriosis is and why it seems to get so much attention.

Sure. Please.

Yeah. It's exciting, because I think there's more public awareness about endometriosis. So that's very exciting. I would explain that endometriosis is when tissue that is similar to the cells that are normally found inside the uterus, they're actually outside of the uterus. And it can attach itself to the outside of the uterus, to the ovaries, fallopian tubes, and even the bowel.

What's the difference between endometriosis and fibroids, when people say they have those two conditions? What are the differences?

So I'll talk about fibroids. So fibroids are noncancerous tissue growths or tumors that grow within the muscle of the uterus. So it is possible to have fibroids without endometriosis, although there are some patients who will have both of those diagnoses. But they have very different pathologies.

So I think, when we're talking about endometriosis and fibroids, their similarity is that they both are gynecologic conditions that can cause problems with a woman's period, pain, a number of different symptoms that might be very similar. But the reason behind these two different illnesses or two different conditions is really, really different.

And what are some of the symptoms of each one? When somebody is experiencing issues — again, we've kind of talked about this on the program before. I think a lot of people — particularly, I think, women kind of suffer in silence a lot of times.

Sure.

And so what would you tell somebody that is experiencing discomfort, pain, heavy bleeding. What should they do?

So first thing is, they should really talk to a gynecologist who is an expert in these conditions. If they're having problems with their periods, if they're having pelvic pain, if they're having heavy periods, if they're having abdominal discomfort, these are all good reasons for them to see their doctor first and foremost.

And the second thing is not to be embarrassed, to make sure that they talk about how they're actually feeling, because so often, women really find that they go, and they're asked, how are you doing? And their immediate answer is going to be, oh, I'm fine, when they're not really fine. And so it's really important, if problems are happening, write those problems down before you go into the doctor so you really know what to talk about when you go in.

There's no reason to suffer in silence. You can get help for all of these situations. So what are some of the common treatments for — let's start with endometriosis, if we can. What are some of the common treatments?

Sure. I always tell patients that every, case every person is very different. So some of the ways we might approach treatment is an anti-inflammatory, such as ibuprofen. One of the mainstays is taking medication that tries to suppress the ovaries or try to suppress the periods, because that helps from a pain standpoint and also from a disease progression standpoint. So it can range anywhere from medications all the way to surgery. Sometimes surgery is needed.

And when you're talking about surgery, I know, oftentimes, and Dr. Laveaux, I know you've spoken about this, when it concerns fibroids, minimally invasive surgery is something that we prefer — obviously, the patient would prefer. Can you tell us a little bit about what goes into that and how that works?

So a couple of things before I answer that, going back to the endometriosis and fibroids, when a woman may have both or one or the other. So we talked about pelvic pain and abnormality with bleeding. And those are common reasons why patients will come to see the doctor. With uterine fibroids, patients tend to have more irregularity with their bleeding. Typically, it's heavy menstrual bleeding or prolonged bleeding. And for a woman who has fibroids, oftentimes, they've had this long history of heavy bleeding that, in their minds, or in your mind, you may think it's normal, so another reason why it's important to have this discussion with your gynecologist.

Also, because we are the experts, were able to — when you talk about the symptoms you're having, to kind of — we're able to think through them and help you see what symptoms are more likely linked to fibroids versus what are more likely linked to endometriosis. And that helps in situations where you may have either both or one or the other. With regards to minimally invasive techniques, Dr. Douglass talked about medical management.

So for fibroids, as well, we'll start with medical management, usually hormones, birth control pills, or progestin-only pills. But then sometimes, surgery is required for treatment. And we know that minimally invasive options lead to quicker recovery time, less hospital stay. Women are able to return back to their lives in a relatively short period of time.

And so when we perform these surgeries, we either do them with cameras that go through small incisions, either through the belly button or the umbilicus, you'll hear us say when you come to the clinic. And then we're able to do these surgeries using these instruments without having to do a big, open incision.

And —

Go ahead.

I was going to say, the benefit to having a surgery that has a really small incision — oftentimes, less than a half an inch for these little incisions-- is that the recovery time is so much more quick. Patients get back to their normal lives within a week to two weeks. And they have minimal need for pain medication. And they're able to take care of their families. They're able to take care of themselves.

And you know, I'm glad you brought that up, because we actually talked with one of Dr. Laveaux's patients about her surgery for fibroids. And she told us about the experience and her surgery.

The surgery was relatively quick. It might have been a two-hour surgery. And my reaction to the anesthesia took a lot longer for me to recover from. And so because of that, I ended up staying in the hospital overnight.

I believe that it could be an outpatient procedure. I could have probably gone home the same day, but I had nausea and needed to be observed overnight. But the next day, I was walking around. I was working from home after I made it home. And it was a really straightforward procedure.

And do you have patients that go home the same day? Does that happen?

Yes.

Yes.

Yes, frequently.

That's amazing. That's really incredible, when you think about it. And it shows, again, first of all, the skill level. But it's just — technology is amazing.

With these surgeries done the old-fashioned way, people used to spend three, four nights in the hospital and take up to six to eight weeks off of work. This is really a difference.

Yeah.

Yeah. In fact, it was funny, when we were doing the interview with a patient earlier this week — I guess it was yesterday — she was mentioning that she knows you from an exercise class and that she was back doing that within a couple of weeks. In fact, I think that's the next soundbite, John, if you want to go ahead and roll that one. And we'll see what she has to say about her recovery.

The incisions recovered very well. It was very easy with the surgical glue. There's no wound care required. And I still have a little bit of tenderness if I press. But I'm back to all of my activities.

I had abdominal tenderness for the first week. And it was tough riding in cars. Chicago potholes jostle you a lot. So driving was not an option for the first two weeks. But by the third week, I was back in yoga and cardio kickboxing class, being very careful and not doing the abdominal exercises, of course. But I was moving around and back at work. So the recovery has been fantastic.

So yoga and cardio kickboxing within three weeks. That's pretty impressive.

Yeah.

Yeah.

Yeah.

So we're getting some questions from our viewers already. And I want to remind our viewers, please just type your questions in the comments section. We'll try to get to as many as possible over the next 20 minutes or so. First one we have is, when I have my fibroid removed, will there be a large scar from the procedure?

So it depends on what approach is used to take your fibroids out. If we are doing a minimally invasive approach, which we prefer to do, then the incisions, again, are less than a centimeter each. You probably have four of those incisions. And it heals relatively quickly.

When patients come back by their two-week appointment, most my patients are doing great. We have a suture that absorbs on the inside and just a glue on top of the incision. And patients do fine.

If you have a larger incision, which is called a laparotomy, that takes some time to heal, as far as the pain control with that. But still, those do quite well. And even when we do-- when I have to do open surgeries, I still try as much as possible to keep the incision as small as I can to still get you safely out of the operating room with the results that you need.

That's fantastic. We have another question. If my mom has had endometriosis or fibroids, should I be concerned? Is this something that runs in families?

And that's definitely true. The more that we're finding out from the endometriosis standpoint is that there's definitely going to be a genetic predisposition. So if your mom's had it, your aunts, grandmother, anybody in your family, it should kind of also help tip off your physician that this process could be happening.

So if you're concerned that it may be an issue for your daughter, what age range do we start worrying about things like this?

Yeah, it's tough. Once girls start having their periods, 12, 13, a lot of times, the history that we hear is that periods were painful, pretty painful off the bat. And they started-- girls start missing school. And that kind of continues for quite some years. So when you start missing out in the activities you normally get to enjoy, that's a red flag that that's not normal.

Dr. Snow, can you tell us a little bit about just kind of the overall, I don't know, theory or concept of care that you have for the women that you see? Because you see a lot of women and all age ranges, I would imagine, in various different situations. How do you how do you care for such a wide range of folks?

Well, you're right. We see women that are still in their teens and 20s, people who have had children, who have not yet had their children, people who are approaching menopause. And as they're reaching menopause, some of these conditions can become even a little more accelerated up until the time of menopause, when both of these conditions, then, tend to be very quiet.

I think that the real approach is, first of all, to listen, to hear exactly what is making this patient uncomfortable. Is it with pain? Is it with heavy periods? What is making it so that her life is really hard?

The second thing is to take into account where that woman is in her life. Is she thinking about wanting to get pregnant, and we need to do something to make sure she can get pregnant? Is it someone who's past those years and really wants some definitive treatment, because they want these symptoms to be gone?

We always, as I think Dr. Douglass referred to, and Dr. Laveaux, that we start with a very stepwise approach. We start with minimal therapy to see if that's going to be appropriate to get rid of the patient's symptoms. But oftentimes, a surgical approach might be appropriate to really give that patient the help she needs.

Dr. Laveaux, we have one for you from a viewer. Can fibroids lead to back pain? If so, why?

Yes. With back pain and fibroids, sometimes, it's not as clear. The straightforward answer is yes, it can lead to back pain. Usually, patients who have back pain with fibroids have very large fibroids. So one of the main symptoms in patients who have large fibroids is what we call bulk. That can come across as just increased pelvic pressure, sometimes back pain, almost similar to what a pregnant woman may have complained about, that kind of stress and strain on her lower back.

However, I do have patients who have smaller fibroids and also have back pain. And in those patients, it's important to separate the fact that the pain that they're having in the back maybe just musculoskeletal pain, pain from maybe carrying something heavy. So yes, to answer your question, fibroids can cause pain. But just the fact that you have fibroids does not necessarily mean that that is the cause of the back pain.

That's going to be challenging from a diagnosis — standpoint of a diagnosis, because there are so many things that can cause back pain.

Correct.

So it's going to be difficult. What actually causes the fibroids to grow?

Yeah. So the growth of fibroids, there's not one thing. There are many factors. And they kind of interplay with each other. The main culprits, really, are our hormones, progesterone and estrogen, which women-- which we make during our reproductive years. We also know that genetics plays a role. There's recent studies showing that patients who are deficient in vitamin D may have an increased risk for uterine fibroids, and it may cause increased growth.

We know that patients who are obese, who have a body mass index over 30, can see their fibroids grow quicker or at least be present. And so there are many factors. And that's part of the reason why we're doing a lot of research to try to determine why the fibroids grow. And once we're able to pinpoint some very clear factors, it really helps us in trying to figure out ways to then combat them. So a lot of the medications we currently use are targeting the hormones, which are really the main players for uterine fibroid growth.

Dr. Douglass, why does endometriosis cause pain?

There's a couple different thoughts about why that happens. One is that — we kind of briefly talked about that-- endometriosis is a very inflammatory type of disease process. So we think that inflammation plays a role. We know that that inflammation can also impact the nerves in your pelvis and just create an overall more sensitive — the pain seems like it's going to be more sensitive for patients.

And we know that the longer that you experience pain, the more sensitive you happen to be towards pain. So we don't have an exact mechanism. But there's probably — it's an interplay with a lot of different factors.

One of the questions that we have here is, is pain during your period normal, particularly severe pain?

So for me, severe pain should not be expected. Cramping — obviously, mild, moderate cramping during periods, is pretty typical for most women. But to be severely in pain, doubled over, again, you're not able to go outside, go to work, that's just not normal. And it shouldn't be normalized as a part of the experience for women during their periods.

I think that something for patients to think about is, if your cramps, if your periods, are something that you're able to take an ibuprofen for and go about your day, that's probably within the realm of normal. But if it's something where you're planning your activities based on your symptoms of your period, either the pain or, in fibroids, because of the heaviness, then that's something that's telling you that maybe that's not right. If you're having to either take narcotics for pain, not go out of the house because of pain, not go out of the house because of the heaviness of your period, that's really telling you that that's not normal.

And again, it gets back to the comments earlier, don't suffer in silence. If you have pain, go see your physician and get it checked out, because there's probably something that can be done.

Yeah.

So let's talk a little bit about fertility, because I know that's very important for people that struggle both with fibroids and endometriosis. And Dr. Laveaux, I want to start with you on this one, because it's one of the things that our patient talked about a little bit was, she wanted to preserve her ability to have a child, potentially, someday. So how does this impact that, and what can be done?

So the role that fibroids play in pregnancy has kind of — over the years, we're learning more and more. We know a couple of things. And I'll start from just even getting pregnant and fertility. There are many women who have fibroids who get pregnant, and have a normal pregnancy, and do fine.

However, there's also a subset of women who struggle with infertility and are found to have fibroids. So we know that there's an association between fibroids and fertility. But we don't think of it as a cause of infertility.

Now, we also know that patients who have fibroids on the inner side of the uterus may be at increased risk for recurrent pregnancy losses, miscarriages, because there's something on the inside where the baby is going. Now, is it possible to have a baby with a fibroid in there? Yes. But we know that when those two things are happening, when there's a fibroid on the inside, and a woman is having these miscarriages, we want to take the fibroid out and allow the woman to try pregnancy with that fibroid removed.

When it comes to a woman who has now become pregnant and is going through the pregnancy, we know that fibroids that are greater than about 6 centimeters or even larger, those women sometimes have higher poor outcomes with pregnancy, so increased risk for Cesarean sections, increased risk for the baby not growing very well, increased risk for the baby's head not being down when it's time for delivery and maybe requiring a C-section from that, increased risk of pain and pregnancy with a fibroid growing.

So when a woman has fibroids and wants to preserve fertility, we offer a procedure, a surgery, called a myomectomy, where we take the fibroid out and leave the uterus intact. Now, doing that surgery itself does lead to some outcomes in pregnancy. So for example, if I take a fibroid out of a uterus in a woman who wants to have future fertility, then she also will need a C-section at the time of surgery.

However, in a woman who is struggling with fertility, we know that removing fibroids that are large will make her pregnancy easier, with less of those poor outcomes that I previously outlined. And even if she did have a Cesarean section, it would be a planned Cesarean, as opposed to one that has to be done because of the presence of a fibroid.

So from the standpoint of endometriosis, what kind of impacts are we talking about with fertility there?

Yeah. So with endometriosis, again, going back to inflammation that happens in a woman's pelvis, we think that that can create an environment that can make it difficult for some women to become pregnant, especially if there's any other factors happening — age, any adhesions, where tissues are stick together, organs stick together next to each other.

With the inflammation, again, with scar tissue that happens, any time there's — the route from the ovary to inside the uterus, if that route is disrupted with adhesions or scar tissue, that will also be a problem for women.

So we have some more questions coming in from viewers, which is great. This one is, I have scar tissue from previous C-sections and fibroid removal surgeries. But I'm still struggling with pain and heavy bleeding. What are the treatment options? Should I discuss with my doctor? Before I throw that question to any of you, always the caveat that this is not designed to take the place of an actual visit with your physician. So take the advice, but see your physician as well. We always tell people that. So anybody who wants to jump on that one —

Sure. So when a patient is having pelvic pain from either previous scar tissue, from fibroids, from endometriosis, if they are done with having their children, there is always the option to minimally evasively go in and remove the scar tissue and/or to remove the uterus and even the fallopian tubes or ovaries, if necessary. Every patient is really different, as you said. And so we really want to make sure that we do the surgery that's right for that particular patient. But if symptoms are persisting, there usually is a surgical or medication — a solution that we can find.

And the scar tissue can be in multiple areas, correct?

Oh, yes. The scar tissue can be in the uterus to the bladder. It can be from the uterus to the bowel. It can be from the bowel to the surrounding tissues, the ovaries and fallopian tubes. So it can be quite extensive.

And what would cause the bleeding? Would it be the scar tissue, or is it something else?

So in most women who have bleeding —

I mean, it's difficult to say without the specifics.

--scar tissue does not cause heavy bleeding. But certainly, fibroids could. And if this patient had had a history of fibroids, perhaps, or fibroids that are still there.

I see. Interesting. Another question from a viewer — this is a good one. Is there a link between fibroids and cancer?

Wow. That's a good question. So the straightforward answer is no. We know that if a woman has fibroids, we're not concerned that the fibroid will become a cancer.

However, there is something called a — the technical name for a fibroid is called a leiomyoma. And there is something called a leiomyosarcoma. The reason why this has come up in the news a lot over the last few years is because a woman may have the leiomyosarcoma that looks very similar to a fibroid.

And in that woman, what we know is that evidence does not suggest that one turned into the other. They were two things that are separate. But they look very similar. They present similarly with bleeding issues. And there have been, in the past, women who were thought to have a fibroid. And it actually was not a fibroid, but was what we call a sarcoma, a leiomyosarcoma.

It is possible for a woman to have fibroids and have a uterine cancer. Those are considered two separate diagnoses and not one causing the other.

And I would just add that when we think about cancer, it's usually age. So as we get older, the chances of something inside the uterus being different or unanticipated is in much older women when that concern comes up. Or if a woman has undergone menopause already, and we see a fibroid that was never there, or it starts to grow, those are signs where we'd be concerned.

Dr. Douglass, another one for you. And you've already touched upon this. But it just came in as a question from a viewer, so I'll ask it. Can endometriosis make your periods severe?

Yes, they can. I would say it can make your periods very painful or severely painful. Hard to know sometimes what component endometriosis is playing from the bleeding standpoint. So there can be a lot of other reasons why your periods — the flow might be heavy.

But probably, having endometriosis might make taking a traditional birth control pill maybe not as effective to try to help control the periods. But severe meaning pain, absolutely.

And actually, there is a condition, though, called adenomyosis, which is very similar to endometriosis. But instead of the uterine lining type cells being outside of the uterus, we find them actually in the wall of the uterus. And that can cause really heavy periods.

And oftentimes, you do find endometriosis and its cousin, adenomyosis, at the same time. So it's possible, when people say that endometriosis might cause heavier periods or severe periods, that that might be that there's another something going on called adenomyosis.

Dr. Laveaux, a viewer would ask, what is the risk of fibroids returning after being removed?

So that's a tricky question to answer. And the reason why is that when a woman makes fibroids, she makes them. So as long as you're in your reproductive years-- so for example, if you had a surgery at the age of 30 to take your fibroid out, we usually would take what we call the big fibroids, the big ticket items, because we always want a balance taking out fibroids versus increasing your risk for having a uterus that is essentially not going to hold a baby.

So in-- sorry, I lost my train of thought. So with regards to whether or not the fibroids grow back, it's hard to know, because if we take out the big fibroids, there might be smaller ones that are just so small, they're not even visible to the eye during the surgery. Or even on imaging, they may not show up.

So they may already have been there at the time that you were getting the myomectomy. So it's hard to say, if you had a myomectomy at age 30, and you have another fibroid at age 40, was it that same one that came back? Unlikely, very unlikely. It's just likely you still have a uterus. You're still at reproductive age. You make fibroids. And so you have a fibroid.

Interesting. Question about endometriosis — can that cause pain when you're not having your period?

Yes, yes. Typically, a lot of my patients that I see, the story is that they had really painful periods when they were teenagers. They were on a pill for a while. It did help. And then the pain progressively starts to come back — pain during the period, and then it starts to progressively start before the period starts. And then it lasts even after the bleeding stops. So you kind of see, often, a progression where it started with just painful periods. And now, pain is occurring outside the period.

Is there any way to prevent endometriosis?

There's a lot — we know about endometriosis even more than we don't know about endometriosis right now. And our best ability to slow the progression or try to shrink the lesions that are inside the pelvis is to suppress the estrogen. So it's kind of a yes and no answer. We think that there's a lot we can do with medication or with surgery. But for women, it's a lifelong diagnosis that they need to be carefully followed for if any areas do come back, but to be monitored closely.

So how are fibroids, cysts, and polyps different? One of our viewers would like to know.

OK. So all conditions that happen in and around the pelvis, and the uterus, and the ovaries. So a cyst typically refers to a fluid-filled area. So an ovarian cyst oftentimes is sort of almost like a little balloon inside the ovary that has fluid inside of it. A polyp is a particular growth, oftentimes, in the cavity of the uterus, in the inside of the uterus. And that is just an overgrowth of the lining of the uterine wall, whereas fibroids are actually a muscular cell that actually divides and has the consistency more of almost like a super ball.

So they are not related to each other. Someone who has cysts is not more likely to have polyps, is not more likely to have fibroids. But each of them are different types of problems that can occur in women of reproductive age.

Final question, we're about out of time. What are the long-term effects of endometriosis on a woman's body?

I think one of the biggest ones is getting into a pain cycle. And the longer that women experience pain, the longer that people experience pain, it kind of gets incorporated into their body a little bit more. And other musculoskeletal nerve issues can come from that. So that's usually one of my bigger concerns with endometriosis.

Well, we had some great questions from our viewers today and great answers from our doctors.

Thank you.

Thank you for being on.

Thank you.

That's all the time we have for At the Forefront Live. I want to thank our viewers for their great questions. Also, if you want more information on women's health services, please visit our website site at uchicagomedicine.org/womens-health. Or call 888-824-0200.

Join us for our next At the Forefront Live. That's Thursday, February 21, when we will discuss head and neck cancer and some of the latest treatments available. Also check out our Facebook page for future At the Forefront Live dates and subjects. Thanks for watching, and have a great week.