Endometriosis Explained

Podcast Transcript

Erica Newlin, MD:

Welcome to Ob/Gyn Time, a Cleveland Clinic podcast covering all things reproductive health. I'm your host, Dr. Erica Newlin. This podcast is intended to help you better understand your health, leaving you feeling empowered to live your best. On each episode, you'll hear from our experts on topics such as pregnancy, fertility, menopause, and everything in between.

On this episode, I'm joined by Dr. Megan Billow to discuss endometriosis, a condition that affects millions of women, but is often misunderstood. We'll cover what it is, why it happens, how it impacts daily life, and what you can do to manage symptoms. Thank you so much for joining me on the podcast, Dr. Billow.

Megan Billow, DO:

Thank you so much for having me today.

Erica Newlin, MD:

Before we start, can you tell our listeners a little about your role in the Cleveland Clinic and your background?

Megan Billow, DO:

Yes, I am a minimally invasive gynecologic surgeon. And what that means is that my practice focuses on providing surgical options for patients with complex, benign gynecologic conditions, specifically endometriosis, large fibroids, chronic pelvic pain. I'm also involved in quality and patient safety works, which is really important for endometriosis because we work to standardize care paths and make sure that symptoms are heard and that we can potentially provide earlier intervention and improve care for patients with endometriosis.

Erica Newlin, MD:

Let's start with what is endometriosis?

Megan Billow, DO:

So endometriosis is a chronic inflammatory condition, and it's where tissue that is similar to the inside of the uterus tissue, which is called the endometrium, grows outside of the uterus. It is most commonly in the pelvis, such as on the ovaries, the pelvic peritoneum and bladder and ligaments. The endometriosis can cause inflammation, scarring, and pain because of the inflammation environment that it causes in the pelvis.

It causes organs to stick together, and that is all how it impacts the entire body, and it is a systemic condition that causes lots and lots of different symptoms.

Erica Newlin, MD:

I have a lot of patients who come to me with pelvic pain and often think that all pelvic pain must be endometriosis. Can you kind of talk about how you approach patients with pelvic pain and differentiating the different causes?

Megan Billow, DO:

Yeah, and it is a really hard thing to do because there is a difference between chronic pelvic pain and endometriosis. However, there is a huge overlap that we see. Endometriosis is probably the most common cause of chronic pelvic pain and presents with symptoms such as pain with periods, pain with intercourse, patients can have pain outside of periods, and oftentimes symptoms are dismissed because of an overlap with other conditions related to bowel and bladder and muscles and nerves. So it is a really difficult condition to really tease out exactly what's going on. However, the main thing with endometriosis is that patients often will describe pain with periods. They've tried all of these different medications, birth control pills that may stop their bleeding, however, they're continuing to have pain. And that's really a red flag that this pain is most likely caused by endometriosis.

Erica Newlin, MD:

How do we diagnose endometriosis?

Megan Billow, DO:

It's a great question and something that while we still don't have specific tests such as blood tests to diagnose it, we've made a lot of progress over the years. And clinical symptoms, as we just talked about, do raise red flags and say, you know, "This patient probably has endometriosis, we need to look a little bit further." And while I always say we're only as good as our tests, if we don't have any blood work to identify endometriosis, we do have imaging tests. And so there are special ultrasounds as well as MRI that we offer here at the Cleveland Clinic that do provide us with oftentimes really accurate diagnoses and helps us to really understand if there is endometriosis impacting pelvic organs.

After that, though, if, even if the MRI or imaging tests do not show endometriosis, it does not mean that you don't have endometriosis because still the way that we absolutely diagnose it is through a procedure called laparoscopy where essentially we put a camera inside and we look and see if you have endometriosis. And if you do, we are able to cut out the lesions, which provides us with an accurate diagnosis as well as helps improve symptoms.

Erica Newlin, MD:

It's always been so interesting to me that the amount of endometriosis that someone may have doesn't always correlate with symptoms. And I say that both to bring that to people's attention and to validate patients who may not have a lot of findings on imaging.

Megan Billow, DO:

Yeah, and I think that's a really important point especially for patients who've been struggling since an early age and have not had a diagnosis and feel like their symptoms are dismissed, they're not being seen or heard, and they're just really just dealing with it. And then to have imaging tests that may say, "All, all of your organs look normal," it does not mean that you don't have endometriosis, and it is something to really seek out care and advocate for yourself because there are providers that specialize in endometriosis and can do the procedure looking for it and can improve your quality of life.

Erica Newlin, MD:

What causes endometriosis? Why do people have it?

Megan Billow, DO:

There's common theories that lead to endometriosis. One of them is essentially what we call retrograde menstruation, which is where blood flows through the fallopian tubes and stays in the pelvis. The issue with that is that, that happens to all women, but not all women have endometriosis.

And so we know that there is something going on with the immune system, there can be a genetics role, there can be lots of other issues that are also causing or leading to endometriosis. And what we know that is one of the biggest factors is a genetic predisposition. So if you have a first degree relative that has endometriosis, you have a seven to tenfold increased risk of also having it. So it's important to have these conversations with your family members, sisters, moms, and having that discussion because knowing that if you're having symptoms, that can really help us to better understand your risks.

Erica Newlin, MD:

Great. How common is endometriosis?

Megan Billow, DO:

When you look at the numbers, the numbers say one in 10 women have endometriosis. However, we think it is probably a lot more common than that. And, and when you start looking for it, you're going to find it. And so any type of pain that is impacting your quality of life, your day-to-day, painful periods, that is not normal. And that is something that I would really emphasize seeking out care, advocating for yourself, because there are ways that we can intervene and help to identify if you have endometriosis. And it's really important because the longer that your body is essentially going through trauma without any treatment or relief, that can lead to more long-term chronic pain issues. And so our goal is to provide methods or ways and strategies to intervene earlier to really help in the long term.

Erica Newlin, MD:

We often focus on the pain with periods and pelvic pain aspect of endometriosis, but what other organ systems have you seen it effect and what else can it do?

Megan Billow, DO:

Yeah, and this is something that I don't think, you know, we talk about it as much as we should. It is a condition that is not just a gynecology condition. It can impact the bladder, the rectum, the colon, the small intestines, it can impact your nerves. We've seen it on patients' lungs. They can also have it on their diaphragm and impact, like, and cause right upper quadrant pain. Interestingly too, there's patients that will present with endometriosis on their skin or in their belly button. And so it is a whole body systemic condition that we have the privilege to have other great surgical services and specialty services here at the Cleveland Clinic that we have really collaborated with and they are also very willing and interested and helpful when it comes to all of these other organs that can be involved. And it's really, really important, again, why seeking out care and help early on to potentially help to decrease the extent of organ system involvement.

Erica Newlin, MD:

What about the impact on fertility?

Megan Billow, DO:

So this is another thing that comes up all of the time, and I think the message to start with is that endometriosis does not equal infertility. However, in patients that do have challenges getting pregnant, about 50% of those women will have endometriosis. And so it is a condition that can impact fertility and is another reason why it's really important that we are able to improve diagnosis, provide earlier intervention so that we can help patients through their journey of their reproductive years and help them to achieve their fertility goals. And we do also work very closely with our infertility physicians and colleagues that are able to provide strategies and interventions for patients with endometriosis. So there is hope, and again, endometriosis does not equal infertility.

Erica Newlin, MD:

Great. And can you expound a little more on kind of the range of symptoms? Does everyone with endometriosis have severe pelvic pain or all of these symptoms? What do you see in your practice?

Megan Billow, DO:

And this is a really, really good point to bring up because, and one of the reasons that endometriosis is so challenging is because it presents with such a range of symptoms and so patients will start to tell themselves that this must just be normal. And it's not normal if any of these symptoms are impacting your quality of life in your day-to-day, but the most common things that we do see is pain with periods, pelvic pain outside of periods, pain with intercourse. There's also bladder symptoms that patients may feel, especially they'll oftentimes describe it as like a burning sensation when their bladder is full or something is tugging or pulling on the inside with sharp pains radiating in other places.

Because of the location in the pelvis of the pelvic organs with the bladder and the colon and the intestines, we also see a lot of GI symptoms, specifically bloating, constipation, changes in bowel habits related to the menstrual cycle. Other more common symptoms too, because of the amount of pain and symptoms that patients are physically feeling, it can also lead to difficulty sleeping, which leads to fatigue, which leads to depression and anxiety. And so all of these things are related and why it's so important to really seek out care and look at all of the options that there are out there for you.

Erica Newlin, MD:

Are there any conditions or diseases that tend to go hand in hand with endometriosis?

Megan Billow, DO:

That's a great question and something that we are doing more research into because we are now as understanding the inflammatory process that is happening or the immune dysregulation that is happening. We're also seeing other conditions that essentially endometriosis is not causing, but we oftentimes will see an overlap of conditions. So conditions such as irritable bowel syndrome, migraines, fatigue, anxiety, as well as other connective tissue diseases such as Ehlers-Danlos syndrome, also patients who have POTS. So yes, there's lots of other conditions that overlap, and so being able to identify these symptoms and provide resources to help patients is really, really important. And our endometriosis patients, we are oftentimes will also be seen in our chronic pelvic pain center as well, which is a really great thing that we are able to provide for patients because there's lots of resources to help with all of these other different types of symptoms and syndromes.

Another important thing that we oftentimes see is pelvic floor dysfunction. So the muscles and the nerves and the pelvis also can contribute to pain and it's also a way that the essentially body responds to these little, like, traumas and pains and things that are going on. And those muscles can get really tense, which can stretch nerves, which can cause pain. And so we work closely with our pelvic floor physical therapists and have lots of resources really to provide relief for that as well.

Erica Newlin, MD:

For sure. I will shout it from the rooftops. I love our pelvic floor physical therapists.

Megan Billow, DO:

Yes. I think everyone should have a pelvic floor physical therapist.

Erica Newlin, MD:

Do you recommend any lifestyle changes or dietary changes that might affect endometriosis pain?

Megan Billow, DO:

So because endometriosis is an inflammatory condition and we know that, the goal is really to kind of decrease that inflammation, control the symptoms. And so there has been some research looking at the role of diet in improving or helping endometriosis symptoms. And while diet is not going to impact the disease itself, it is something that can help provide better lifestyle overall. In terms of specific diets, we oftentimes recommend the anti-inflammatory diet, which is really eating lean proteins, fruits and vegetables, avoiding processed foods, and just being really mindful of any sort of foods that may lead to bloating or inflammation, because every patient is different. And so having an individualized care plan specifically related not only to the amount and type of endometriosis, but also how your body is impacted by the disease.

Erica Newlin, MD:

Can you go into a little more detail on what treatments we might offer someone with endometriosis? We can start with medications and then go on from there.

Megan Billow, DO:

Yeah. And so I think the most important thing to know is that there's no one-size-fits-all for patients. And it's really based on an individual's journey with the disease in terms of their fertility goals, their pain symptoms, how the disease is impacting their quality of life, as well as what their goals are for their treatment as well. Medications are oftentimes helpful to control symptoms. They are not going to make the disease go away. And I think it's really important that we do emphasize that there is a role for medications. While surgery is the way to diagnose and to excise or remove the disease, medications are very helpful to improve symptoms. And while most of the medications, the goal is to essentially decrease the estrogen levels because estrogen is what drives the disease, the medications are not going to make lesions go away or, you know, cure the disease, and oftentimes progesterone only methods such as progesterone only pills or shots or an IUD have been shown to be an effective treatment option.

The goal is to essentially stop bleeding. And so when you're not bleeding and your hormones are not given that chance to go up and down, patients oftentimes will have improvement in some of their symptoms. There's also other medications that we refer to as GNRH antagonists and agonists. They are available and oftentimes we will use them in the more like severe forums where patients have tried surgery, et cetera. And so, again, it's really an individualized plan for each patient. It's not a one size fits all.

Erica Newlin, MD:

I don't feel old, but certainly since I was in medical school, I feel like I've seen the shift from kind of that diagnostic laparoscopy we look in and we're like, "Oh, there's endo,” to more excisional procedures. Can you talk about that evolution and the role of excision in endometriosis treatment?

Megan Billow, DO:

Excisional surgery has provided so much relief and treatment options for patients, and it's such an important thing to emphasize because we don't want those lesions to be sitting in the pelvis and just growing and causing inflammation and making all the organs stick together. And that is where surgery can be very, very helpful. We like to caution though that not all patients are going to 100% respond to surgery because of the other conditions that we talked about before previously that makes pain and pelvic pain so complex. And so having goals for symptom improvement is really, really important as you may be going into having a surgery. But the goal for surgery is to excise and cut out, remove the disease. We don't have to and recommend not removing ovaries and uterus and fallopian tubes, and so surgery does not mean that you're going to have to then have a hysterectomy or have your ovaries removed.

The removal or excision of the endometriosis provides patients with a lot of relief. And while we do know that there is a recurrence rate, because again, the disease is stimulated by estrogen, there are a lot of patients that go a long while without having any recurrence of symptoms, but it is an option and something that will really, really can improve your quality of life and your pain.

Erica Newlin, MD:

It's so great to know that there are different treatment options and that we can really tailor it to the patient and their symptoms. Delving a little into symptoms of endo that aren't often discussed, tell me more about endo belly. We see that a lot on social media and around.

Megan Billow, DO:

Yeah. So endo belly is when patients are having bloating and it has to do with the inflammation inside and it has to do with the GI system essentially reacting to that endometriosis and the inflammation. And so patients will often wake up or throughout the day just feel that bloating sensation. And it's because of the presence of the inflammatory lesions, which gets back to why excisional surgery is so important that those lesions are removed to control and decrease the amount of inflammation. And so by having the endometriosis removed, it will help with that endo belly or those types of symptoms.

Erica Newlin, MD:

Why does endometriosis cause pain with sex?

Megan Billow, DO:

It is a very common thing that we see, and the reason that it causes pain with sex has to do with the lesions themselves and the location, but also that pelvic floor dysfunction and the response of the pelvic floor to the pain that patients may experience. And so if the muscles and the nerves are being impacted, then patients can have pain with intercourse. And that is something that we do have treatment options available and it doesn't need to be something that you're dealing with because the relationship and issues that can come along with chronic pain and pelvic pain and endometriosis, these are areas that we can intervene and provide options to help so that you're not experiencing those issues.

We also work closely with our pelvic pain center here and they are able to provide options such as injections into the pelvic floor. Sometimes patients will get Botox into the pelvic floor that can help with those symptoms as well.

Erica Newlin, MD:

For sure. And we mentioned how much we love our pelvic floor physical therapist. And I always tell patients that I don't want sex to be painful and that that's a big part of my job to discuss. So definitely if it's something that you're experiencing to bring it up with your doctor.

Megan Billow, DO:

Yes, absolutely. And patients I think are oftentimes feel like, you know, something must be wrong with them or this maybe just be something that's normal and they must just kind of deal with it. But you don't have to deal with it and you don't have to be embarrassed to bring it up because this is why we're here and we're here to help you.

Erica Newlin, MD:

And I often tell patients too, if sex is painful, to not push through it because that can lead to more pelvic floor dysfunction and cause more problems down the road. So certainly we want to see you and we want to help you with this.

Megan Billow, DO:

Yes, absolutely.

Erica Newlin, MD:

We've covered a lot today from symptoms to treatment and lifestyle tips. Let's wrap up with, with some encouragement for anyone listening who's living with endometriosis. What is your takeaway message for them?

Megan Billow, DO:

I think the biggest takeaway is that periods are not meant to be painful. You're not just making your symptoms up. This is not something that you just have to deal with because there are options out there. Endometriosis is real. It is very common and it is treatable and there are people that want to hear your stories and want to help you and we do have options that can help you.

Erica Newlin, MD:

For sure. And I think that's really validating and empowering to hear since we've talked about how long it can take to get that endometriosis diagnosis and how difficult it can be to diagnose. So if you don't hear the answer that you like or that you feel like resonates with your symptoms to keep pursuing care.

Megan Billow, DO:

Yes, absolutely. Speak up for yourself. Self-advocacy is strength and there are options and we are here to help you.

Erica Newlin, MD:

Great. Well, Dr. Billow, thank you so much for joining me on the podcast today.

Megan Billow, DO:

Thank you so much for having me.

Erica Newlin, MD:

For more resources on endometriosis, visit clevelandclinic.org/endo-care. If you found this episode helpful, subscribe and share it with a friend. Remember, your health matters and understanding your body signals is the first step to living your best.

Thank you for listening to this episode of Ob/Gyn Time. We hope you enjoyed the podcast. To make sure you never miss an episode, subscribe wherever you get your podcast or visit clevelandclinic.org/obgyntime.