Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered Podcast. I'm Dr Neha Pathak, WebMD's Chief Physician Editor for Health and Lifestyle Medicine. Endometriosis is often thought of as a silent epidemic affecting an estimated one in 10 women, but it remains notoriously underdiagnosed. And misunderstood.

In today's episode, we're going to take a step-by-step approach to the complexities of endometriosis, why it can present in so many different ways, why it's tough to pinpoint on standard tests, and how it can significantly impact fertility. We'll dive into the real questions you've been asking.

How can someone know if they really have it? And why is it so often missed? And most importantly, what treatments, both surgical and medical, are out there to bring relief and preserve fertility? Whether you've been suffering from mystery symptoms or supporting someone who has, this conversation is packed with insights to help you better understand endometriosis and advocate for the care you deserve.

First, let me introduce my guest. Dr Lora Shahine. Dr Shahine is double board certified in reproductive endocrinology and OBGYN.

She practices at Pacific Northwest Fertility and is a clinical associate professor at the University of Washington in Seattle, author, educator, and host of the Baby or Bust fertility podcast. She has so much information to share with us today. Welcome to the WebMD Health Discovered podcast, Dr Shahine.

Lora Shahine, MD: Oh, thank you. I am so excited to be here.  

Pathak: I am super excited to jump into our conversation, but before we do, I'd love to ask about your own aha moment, your own health discovery around endometriosis, and the impact it was having on your patients.

Shahine: Well, truly, I see it impacting fertility. So, my main focus is helping people start or complete their families. I am often the first person to diagnose endometriosis, even though someone may have been suffering from it their entire lives. I am often educating and teaching people about something that is not only their current goal of building a family but also their future, health, and well-being.

So, to have that impact is pretty incredible and, unfortunately, very common because so many people are misdiagnosed for so long.

Pathak: So can you help us define and understand what exactly endometriosis is? And if you could just kind of give us a snapshot of the anatomy, what should we be visualizing when we're thinking about endometriosis?

Shahine: I describe endometriosis as a chronic inflammatory condition that can show up with different symptoms and different signs, and that's one of the reasons it's hard to diagnose. Traditionally, we think about it showing up as painful periods, pain with intercourse, and about 50 percent of people that have endometriosis will have an infertility component.

As far as what's going on in the body, a type of tissue that is typically only found within the uterine lining. So it's part of the lining, the tissue that's usually shed outside of the body. That same type of tissue, you look at it under the microscope, it looks the exact same, but it's found outside of the uterus.

And so it can be on fallopian tubes, on and within the ovaries, on the outside of the uterus. And what's wild is it can be found in places. So, we have a lot to learn about endometriosis. It's still under a lot of research, but it is pervasive, and it impacts about one in 10 reproductive-age women. This is our best guess because there are probably a lot of people out there who don't know that they have it.

Pathak: Yeah, that's really interesting because I was going to ask you, how common is it? And so clearly, in your practice, you're seeing a lot of women that you're diagnosing with endometriosis. And it's interesting that sometimes they've had this journey for years, decades, and you're the first person to be able to give them this diagnosis. Why is it so hard to diagnose?

Shahine: Great question. Because the true medical way to diagnose it is to see it, to see the tissue, and so traditionally, it really does require a laparoscopy, or a minimally invasive surgery where you stick a camera through the belly button and look inside and actually see these lesions and adhesions or scar tissue that's from the endometriosis tissue throughout the pelvis and in the abdomen.

And so with that type of requirement and fewer and fewer people getting laparoscopy for different reasons, kind of in the field of gynecology, it can go undiagnosed for years. So, you cannot always see this on ultrasound CT scans or MRIs. The most common presenting symptom is pain with periods.

And so many people are just taught that that is just part of being a woman. And it's hard to really. Tell people or share how pain is impacting you and it can be so easy to be dismissed at, you know, your 10-minute checkup visits each year, and the way it can present in other ways, like GI issues or urinary issues, can make it seem like, oh, you know, it must be a GI issue, or it must be that you have, you know, a bladder infection.

Where it really takes somebody kind of pulling all these puzzle pieces together to really get the true picture, so it's multi Factorial why it takes so long To get diagnosed. The symptoms can be dismissed. The symptoms can be confusing to practitioners and patients. And then the actual diagnosis requires invasive surgery, even if you can get sort of a suspicion of it.

So it's a lot of reasons that it takes a long time.

Pathak: Really interesting. It's like a great imitator in terms of how it can be presented. So, it can be different for different people. So say you as an individual are having symptoms of painful periods, pain with sexual intercourse. Could it be that over the course of your lifetime, even those symptoms can change?

So you might then also have abdominal symptoms at a certain point in your life, or do they progress? Like once you've got one. piece of that puzzle, you're going to add on to it. You might not lose that bit,

Shahine: You know, if it was predictable, I think it would be a lot easier to diagnose. Sometimes, symptoms can wax and wane. And a lot of it depends on where people are at their stage of life or maybe even what kind of contraception they're using. So, a really common story that I see is that someone had painful or heavy periods or irregular periods in their youth, could be in their teenage years or college or kind of twenties. And they were given birth control pills, not only as a form of contraception but as a way to regulate periods and treat all types of symptoms that come along with, You know, periods and having regular, predictable menstrual cycles, the progesterone and birth control pills actually quiet the inflammation from endometriosis.

So they had painful periods, now they feel much better and they often sometimes forget about it. And then when they stop their pills or hormonal contraception because they're trying to start their family.

All of a sudden, they start having symptoms. So that's another reason that I personally started to see people and diagnose it. And that's an often question that I have. They say, Oh my gosh, my periods are so painful. It's never been like this. And then I'm a little detective. I'm like, okay, well, you know, tell me a little bit more about starting to try.

And they're like, oh, okay. I got married two years ago and stopped my birth control pills, you know, right away. And then the periods have just gotten worse and worse and worse since then. Kind of like it was when I was a teenager. What's going on? You know, and so it's kind of a little clue.

Pathak: So it sounds like by the time someone has come to you, they're really sort of struggling with fertility. And then you're piecing together some of these pieces because it is a big decision whether or not to do an invasive procedure to check for endometriosis. So what are some of those flags that sort of go on high alert to be like, okay, yes, this is someone I do want to do this invasive procedure?

Shahine: I've seen a great change. So I've been practicing for a little over 20 years. So back when I was in my fellowship at Stanford, we did laparoscopies almost routinely on patients with long-time kind of unexplained infertility, like someone's having regular periods. So they have eggs, and they're ovulating, and the sperm count is normal and anatomy looks normal and everything that we can do, but they're still not getting pregnant.

We would do a laparoscopy, and I saw endometriosis so often I was like, oh my gosh, everyone has it, you know, but these are people who are struggling to conceive and having infertility. And I have seen this throughout my career. As IVF has gotten so much more successful, like we've learned so much about it, it really does address a lot of the fertility issues with endometriosis.

I think a lot of times we're doing less laparoscopy to necessarily diagnose, but we're still helping people meet their goals and not necessarily with IVF, but I just definitely see a shift in my field that my field is much less surgical and more sort of IVF. You know, focused and, uh, that can be a way to help people meet their goals.

So, I'm doing fewer and less laparoscopies in my career and sort of through the field. But there are times when I think it's really important, especially if my patients have a lot of pain, you know if it's really impacting their everyday life, they think that doing the laparoscopy with a professional that is really focused on pelvic surgery, that's a really important thing if you want to talk about that, can really minimize their symptoms and also decrease that inflammation to help with their fertility journey as well.

So it's a really complicated thing. My quick answer to your question is we're doing fewer laparoscopies, where we're still helping people build their families. That doesn't mean that there's less endometriosis out there. 

Pathak: What are some of the risk factors that might suggest that someone has a higher likelihood of having endometriosis? What are some of the causes? What do we know about the beginnings of this?

Shahine: Oh my gosh, such a good question. And that is what we are researching and need to know more. just like a lot of disease, there are probably multiple factors. There's definitely a genetic component, so it can run in families. not always, but if your sister has it, or your mom has it or, your maternal aunt has it, there's a higher chance that you're going to have it.

There is some very interesting data into, exposures to toxins like endocrine disruptors, which very much mimic estrogen in our body. Estrogen inflames endometriosis; progesterone quiets it. So there are some studies looking at the level of certain endocrine-like toxins like bisphenol A or BPA, great example, higher levels and then people do laparoscopies, and they have a higher chance of having endometriosis or in people that are known to have endometriosis seeing symptom relief with a change in diet or change in exposure to toxins. So, the genetic component maybe an immune or an autoimmune tendency towards the disease. Maybe some exposures household chemicals, foods that we're eating might tip people over into being symptomatic. and we're still learning.

Pathak: And are there any things conversely that are protective? Are there any behaviors, diet, nutrition, or anything that we know with regard to the science that might protect you from developing, or if you have, it might keep the symptoms less likely to flare up on you?

Shahine: Yeah, exposure to progesterone can really decrease symptoms and decrease progression of disease. So, for people who have been on birth control pills, the dominant hormone in a birth control pill is actually progesterone. And so that actually can often keep symptoms at bay, really treat people. Some people like progesterone.

IUD, intrauterine device, because that's delivering progesterone really close to the tissues. and some people will have real symptom relief, honestly, with pregnancy. So Some people get really frustrated when they go to their doctor, and they're like, I'm having painful periods, and they say, oh, just get pregnant, and then you'll be cured. You know, that was something that my mom heard in the 70s, you know, in the 60s when she was trying to conceive, and it actually was true for her, like with her first pregnancy afterwards, she didn't have painful periods anymore and only, At menopause, I hope I'm not giving away too much mom, but you're an open book when she had a hysterectomy, they found endometriosis and it really explained a lot of her symptoms her whole life. So, I do think that exposure to progesterone, some lifestyle modifications, like people will honestly find like a healthy lifestyle with nutrition and moving your body and, you know, decreasing exposure to toxins can honestly have symptom relief and then excisional surgery. So, having surgery is in the hands of a true pelvic expert that is trained in excising the endometriosis, not just burning it or ablating it, which is what I learned back in the dark ages. We now know so much more. This is why I don't do laparoscopy anymore. I refer to experts in my area that that can truly sometimes provide symptom relief for a long time.

Pathak: And then in terms of types of diagnostic tools, do you have other tools that you are thinking about using? Do you give someone a trial, on a progesterone medication to test your hypothesis? Or how do, how do you sort of think about other types of tools for diagnosis?

Shahine: listening to women is one of the most important things. So really painful periods, changes in bowel changes in bladder with their period family history. Like there is nothing like listening to someone and giving them space to truly tell you what's going on. Because oftentimes they'll say, tell me about your periods.

I try to ask a really open question and they're like, Oh, it's fine. You know, I'm like, well, is it painful? Like, yeah, but it's fine. And then I have to keep asking and they'll say, Oh yeah, I actually don't go to work for the first day or two of my period. And I'm often on the floor in the bathroom vomiting, and to them they're like, well.

That's just the way it's always been and every time I've tried to talk to a doctor about it they dismiss me and my whole family is like this. So it's just you know, it's just a part of life and I'm like no That is not. Okay. I don't like using the word normal, but I'm like that is not okay And we need to figure this out, you know, so It takes, a little bit more than maybe filling out a checklist, when you go see a doctor, you know, on paper, you gotta talk.

And then, a history of like being on some sort of hormonal contraception with a progesterone component going off of it and seeing a change in symptoms, really important. There is a non surgical test for, propensity towards endometriosis. It's not really widely used, but in the fertility world.

We sometimes will use this. It's an endometrial biopsy. So actually taking cells from the uterine lining and testing it for a marker called BCL6. And at a certain time in your cycle, so it has to be done in the luteal phase after ovulation, if you have a certain level of this BCL6 in your uterine lining, you have over a 90 percent chance of having endometriosis. So, it's not perfect. We're still learning, but that's something that I often will use because You suggested, and I heard you when you said, Oh, well, do you just try on hormones to see if their symptoms get better? Not my patients that are ready to be parents, like another cycle without the ability to try to conceive is torture.

So, in a primary care setting or someone that's not trying to conceive, a lot of times people will try birth control pills for two or three months, see if the symptoms get better. And then you say, okay, well, we found a treatment and probably that's endometriosis. But, kind of, you play around with things, not in my particular situation.

And then the only other diagnostic tool that can sometimes be helpful is a pelvic ultrasound because sometimes people will have a collection of endometriosis on their ovaries that is a type of cyst that has a very particular appearance to it. And if it is a collection of endometriosis, it's called an endometrioma.

So, I just can look at someone's ultrasound, which is often a first kind of fertility checkup, and say, Oh, that looks like an endometrioma. And then if we are doing ultrasounds over the next couple of months, it doesn't go away. It's not like it was, you know, a follicle that ovulated or, you know, if it doesn't go away and it has a certain appearance, I'm like, Oh yeah, I think you've got endometriosis.

But just because someone has normal looking ovaries or does not have cysts on their ovaries, that does not exclude endometriosis. You can absolutely still have it, and all the imaging can be normal.

Pathak: So let's talk about then some of the myths that patients come to you with that you sort of have to demystify someone comes to you, they're concerned about their fertility, they're relatively young and they think, well, I can't have endometriosis. I'm too young. That's something that happens over the course of someone's life. How do you talk to someone about that?

Shahine: Endometriosis doesn't care how old you are. There's no ageism with endometriosis and, I don't think about it, as a risk factor of age.

Pathak: And then let's talk about the converse. So someone comes in, they've heard that pelvic pain, painful periods, pain with, sexual intercourse, That is just definitive diagnosis of endometriosis and they want to move forward with even invasive procedures and then you sort of find that it may not be endometriosis.

So how do you talk to someone about really thinking about that differential before they go in just purely convinced that this is what it is, and this is going to solve all of my problems.

Shahine: Oh, that's a great question. to reflect back on something that you said, endometriosis can be the great mimicker. So, on the flip side, a lot of the symptoms that you have could absolutely be from endometriosis, but the symptoms could be from something else. So you could have maybe an anatomic issue that's leading to a lot of symptoms, like uterine fibroids can definitely cause pain with periods or bladder symptoms or heavy periods.

You really could have, a bladder condition called interstitial cystitis, which is like an inflamed bladder that's not necessarily from endometriosis, but it's causing your symptoms or irritable bowel syndrome, you know, with on and off, diarrhea and constipation or painful bowel movements that can be endometriosis, but it could be something else.

So, I definitely empathize with people wanting an answer and feeling like, Oh gosh, I really think that this could be it. But we just can't laser focus. We're partnering in this together. We're detectives in this together and we'll figure it out. and just take it one step at a time. 

Pathak: I imagine that you're also working with a lot of the mental health implications. So how do you talk to your patients and make them comfortable talking to you about that piece of their journey as well?

Shahine: I talk about it every day, and people with diagnosed endometriosis do have a higher incidence of anxiety and depression. And a lot of it is because their symptoms are impacting their daily life, they're like afraid of getting a period, or they've just been gaslit every time they've tried to ask for help, not only from doctors but even their family and friends, like sometimes families just like, yep, well, that's just part of being a woman. 

so it's multifactorial, but. I think validating those feelings is a really important first step. Listening is a really good second step. And then finding support, not only that right pelvic surgeon or that right fertility doctor that's going to help you meet your goal if that's what it is.

But also, recognizing that therapy or group support or books that help them kind of work through understanding the emotional piece of endometriosis, is really important too. It's a part of the whole picture.

Pathak: so as you talked about too, just reflecting on what you've said about this being a lifelong journey that you're on. So it may be that in this part of your life, you're really focused on the fertility piece of it, and sort of overcoming those challenges. Let's talk about what you might think about in terms of your symptoms or what you might need to be thinking about in terms of management later on in your life.

Is this going to be a, an issue that you're going to be thinking about until menopause? Does it improve after menopause? Can you talk us through sort of the later parts of the journey?

Shahine: Yeah, a lot of women do find relief and symptoms with menopause because they're not having periods anymore and estrogen levels are a lot lower. and so absolutely trying to sort of minimize the impact on daily life and symptom management until menopause is a big part of this. I don't want people to worry like, Oh my gosh, I'm going to feel like this until then.

There are so many treatments ,and there are treatments that are non-hormonal I know I have really emphasized the progesterone piece of this, but it's not a part of my practice because a lot of the medications that are out there to Treat endometriosis and symptoms are not compatible with trying to conceive.

So I don't keep up to date as much on that but finding a practitioner that does work with you long term And thinks about current symptoms hand ow it's being and is a partner in that process. It's really important.

Pathak: Are there any other action items that you'd like someone who's listening today to take away from this episode if they are struggling and still haven't found a definitive answer?

Shahine: If your doctor doesn't believe you does not validate the symptoms you're bringing to them or your concerns that you think it might be endometriosis, find a different doctor. There is no shame in getting a second opinion and finding somebody that's going to listen to you. A lot of doctors that are out there practicing graduated with me, you know, in the, you know, early 2000s and we have learned so much over the last 20 years and you have to actively, stay up to date and make endometriosis part of your practice, listen to women. And so if they're not doing that, that's okay. They're great at other things, but that doctor is not going to be great for you.

I think, some good resources are. a website called Nancy's Nook. it's an endometriosis focused, website that has some education and it actually lists pelvic surgeons that really focus on excisional surgery how different that is from ablative surgery. there's, endometriosis.org. There's the American Society of Reproductive Medicine, ASRM. org. These are some really good resources for learning more and I hope that that's really helpful.

Pathak: Thanks so much for joining us for this conversation about endometriosis, a condition that's too often overlooked or dismissed. We learned how symptoms can be varied. and sometimes misleading and why taking the time to listen to a patient's story is so crucial for accurate diagnosis.

We also discovered that while an invasive procedure called a laparoscopy remains the gold standard for confirming endometriosis, newer approaches in fertility care and excisional surgery Can change the landscape. It's a relief to know that there are multiple paths forward and that partnering with a skilled, compassionate provider can make all the difference.

We also looked at the fertility challenges that a woman with endometriosis might face the big takeaway is No one should feel stuck or resigned to live with ongoing pain and uncertainty.

If you are experiencing symptoms or suspect endometriosis, Seek out a specialist who will truly listen. And most importantly, remember that you have the right to advocate for yourself, gather resources and find support because you deserve answers and relief.

To find out more information about Dr Lora Shahine, make sure to check out our show notes. Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform. If you'd like to send me an email about topics you're interested in or questions for future guests, please send me a note at [email protected]. This is Dr Neha Pathak for the WebMD Health Discovered podcast.