S3_E5_All About Endometriosis: Audio automatically transcribed by Sonix

S3_E5_All About Endometriosis: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Kristyn Hodgdon:
Hi. I'm Kristyn Hodgdon, an IVF mom, proud fertility advocate, and co-founder of Rescripted.

Staci Tanouye:
And I'm Dr. Staci Tanouye, a board-certified OB-GYN striving to make reproductive and sexual health fun and empowering for all.

Kristyn Hodgdon:
Welcome to Dear Infertility. This season, we're going back to the basics. From menstrual cycle red flags to what you need to know before you start trying, we're giving you the tools you need to take control of your overall health and fertility.

Staci Tanouye:
Does birth control cause infertility? Do painful periods mean that I have endometriosis? We're here to answer all of your real-life questions and provide you with patient-centric advice and support so that you can be your own best health advocate.

Kristyn Hodgdon:
Now let's dive in and talk about everything sex ed failed to fill you in on.

Kristyn Hodgdon:
Hi everyone, and welcome back to Dear Infertility. I'm your host, Kristyn, and I'm here with Dr. Staci Tanouye. Hi, Dr. Tanouye.

Staci Tanouye:
Hi, Kristyn.

Kristyn Hodgdon:
How are you?

Staci Tanouye:
Good. It's good to be back.

Kristyn Hodgdon:
Absolutely. So, today we're talking all about endometriosis, which I don't personally have it, but a lot of women in our community do, and it can often take a really long and frustrating journey in order to be diagnosed. So really looking forward to kind of demystifying all things endo today.

Staci Tanouye:
Yes. And Endo and what we refer to endometriosis as frequently as just endo, because a lot of people do. But endo it was a really hard topic, it's a really, really tough topic because it's so widespread in what people experience, it's so diverse and the effects that it has on people's lives, and it's so not well understood by the medical community. And I think we're just getting to the point where we're it's getting more and more attention in the research community so we can get more information. But it's tough, it's a really, really tough disease.

Kristyn Hodgdon:
Yeah. So that's an interesting point that you bring up like a lot of, a lot of times it's tied to the research or lack thereof, that is why it's not getting diagnosed sooner, or there are not more widespread treatment options, correct?

Staci Tanouye:
Correct. Exactly. And I think, again, women's health and reproductive health, in general, is not well funded for obvious societal reasons. And because of that, endo in the past has gotten really buried and really hadn't been well researched. And as it's gotten a little more and more attention and we've gotten more experts that have really dived into this specifically, I think it's been more beneficial for kind of the research aspect and understanding. We still do not understand endo at all, but we're getting more and more little bits and pieces that are helpful for us.

Kristyn Hodgdon:
Yes, hopefully it's all moving in the right direction.

Staci Tanouye:
Yeah.

Kristyn Hodgdon:
So what are some of the signs and symptoms of endometriosis?

Staci Tanouye:
So endometriosis is characterized by usually extremely painful and sometimes very heavy periods. Some people even have pelvic pain when they're not on their periods so just throughout the month. You can have extreme bloating at various times during your cycle, you can have altered GI symptoms, stomach and GI issues. You can have pain with peeing, you can have pelvic pain with bowel movements, you can have pelvic pain with, with sex. So it really is a syndrome that's highlighted by a pain syndrome as well as potentially heavy bleeding with periods as well.

Kristyn Hodgdon:
Yeah. And it's so crazy to me that sometimes it can be silent also, there's not any outward symptoms, and then you go through IVF and you discover that you've had and all along it's one of those mysteries, I guess?

Staci Tanouye:
Right, yeah. That's one of the crazy things about endo. And we'll get there in a little, in a little bit, because I know we'll talk kind of about the extent of things a little bit. But one of the craziest things about endo is that physically what you can see in the pelvis for endo doesn't always correlate with how severe the disease is. So it is very possible to go in for surgery and look inside someone's body and see endometriosis everywhere. And they weren't there for endometriosis surgery like it just happened to be found, they've never had pain, their periods are fine, they never have problems getting pregnant, it's totally fine, they have no symptoms. Or someone could have severe symptoms and pelvic pain and everything that goes along with endometriosis. And you go in, get surgery and look inside someone's pelvis and there's minimal disease there. It's so crazy that the spectrum of what people experience and how sometimes that can or cannot correlate with what we actually find inside someone's body. And that's one of the mysteries of endo as well.

Kristyn Hodgdon:
Yeah, it's crazy. So when should you see a doctor if you suspect that you have endo?

Staci Tanouye:
So anyone who has severe period pain that is not remedied or taken care of by home and over-the-counter things. So if you take a little Tylenol or ibuprofen and you can continue going on with your day and your period is totally manageable, with that, you're doing just fine, that's normal, within the normal range for, for pain during your period. If none of those things are helping, Tylenol doesn't touch your pain, ibuprofen doesn't touch your pain or your period pain is completely incapacitating you to where it's getting interruptive to your life, you can't go on with your daily activities, work, school, whatever it may be that needs to be evaluated, and up to 10% of people in our population have endometriosis, so we have to remember that, too.

Kristyn Hodgdon:
It's so common. And so why does it take, we talked about earlier, an average of seven years to be diagnosed.

Staci Tanouye:
Yeah, there's lots of reasons for that. One of them is that well, up to 10% of our population has endometriosis, but it's still not the most common pain syndrome during periods. So clinicians tend to lean on these other sorts of things for causing pain and kind of push endo to the side a little bit. There's also historically, there's a history of doctors or even just people in general, our support people, our family, of minimizing women's pain, minimizing and ignoring it. Oh, that's just your normal period, oh, every woman goes through that, and I hear this from family members all the time. My mom was just like, oh, not my mom, I'm saying in general, a patient will come to me and say, oh, my mom was always just telling me, suck it up, suck it up, this is what you go through when you get to this age. And they probably went through that too, and we're told that too. So it's just passed down over and over again that you get to a certain age, you have a period of period sucking, you just have to deal with it and suck it up, and that's just how it's going to be. And that kind of squashes someone going to get evaluated or even bringing up that their periods are painful because these outside influences are telling them that that's just normal. And then you get to the doctor and finally say, well, I had these painful periods and then the doctor does the same thing to you, oh, that's probably just normal, oh, just try this, I'm sure it will be fine. And so we go through that whole circle of just denying people's pain. And just to put it simply, it's internalized misogyny all the way around. And sometimes it's not people's fault because that's just what we've been taught, but we really just have to break that cycle. And then the last reason is, like we've been talking about, endo is just very poorly understood. It's really, really poorly understood in terms of everything. And so that's why it takes just so long for people to get properly diagnosed.

Kristyn Hodgdon:
So if you suspect someone has endometriosis, what would your next step as, as an OB-GYN be?

Staci Tanouye:
So my next step, it kind of again, it depends. There's no one cookie cutter sort of evaluation for each person because endometriosis is such a diverse sort of disease. Some of this is going to be tailored to each person, how severe their symptoms are and where they're at in their process. So some people, if they're having period pain, we might try just some simple things like higher doses of ibuprofen or birth control pills, and if those things kind of can control those symptoms, that might be all we have to do. If we're finding that we're not controlling or someone comes and has said, I've tried this, this and this and nothing is helping, then we're going to move through things a little more quickly. And again, the workup is going to depend where everyone's at in their process, what they're experiencing and what their goals are at the time too.

Kristyn Hodgdon:
So yeah, if someone's trying to conceive, what's the sort of path forward.

Staci Tanouye:
That's right. So if someone's trying to conceive, we're not going to slap birth control pills on them because that's not our goal at that time. So that's why this, the evaluation is a little more individualized to it depends on where you're at in your process, what you've done, what's going on, your severity of symptoms and your goals of where you want to be. So that all kind of goes into it. So for someone who is not trying to actively get pregnant, for someone who has moderate pain but is doing relatively okay, we might try some simple things at first for someone who's already been through the ringer or who is actively trying to get pregnant, we're going to be more aggressive with things and this can also be just person dependent on what the patient wants to do too. If the patient wants to be more expeditious about things like that's, that's what we're going to do. If you're at the point, if anyone at any point says, I'm at the point where we need to do something more significant, we're going to do that something at that point. So again, tailor it to each person. But simple things like higher doses of ibuprofen and pain control medications or other types of pain control medications or birth control pills can be more simplest thing that we do, and those things are meant to control symptoms and kind of hold that disease at bay, but it's not going to be a definitive treatment for that. And for some people that might be okay, okay? For other people, that's not okay. The only way to definitively treat endometriosis and definitively diagnose endometriosis is via surgery. So there are some imaging modalities that we can do. But most endometriosis does not show up on things like a normal ultrasound or a normal MRI. We're getting a little more research into some more sensitive MRI technologies that might be able to pick up some extra things there. But we're not quite there yet universally. So we do add in imaging just to look at structural things, but imaging is not usually diagnostic. The only way to truly diagnose endometriosis is via surgery, getting a tissue sample and handing that tissue sample to the pathologist so the pathologist can look at it under the microscope and say, this is endometriosis. Without surgery, we can suspect a diagnosis based on people's clinical course and symptoms based on their response or non-response to certain medications, so we can suspect a diagnosis, but the only way to definitively diagnose is surgery.

Kristyn Hodgdon:
And so is that when you typically find out how severe it is to, can you explain a little bit about the different stages of endometriosis?

Staci Tanouye:
Yes. So over the last few years, endometriosis has gone through these assigned stages and it's a little more complex. So we won't get into it completely. But there's four stages of endometriosis and it's based on a point system, based on lots of different factors of what's present versus not present. But the most simplest explanation of it is stage one is minimal disease, stage two is mild disease. And so the stages one and two are kind of the early stages or the more mild stages of endometriosis and stages three and four are getting into the more moderate and then the more severe disease, which comes with more extensive disease found at surgery or on imaging and more extensive symptoms as well. So typically stages one and two are kind of the earlier, more mild stages. Stages three and four are the more significant, more severe stages.

Kristyn Hodgdon:
Yeah. And like you said earlier, the stage doesn't always correlate with the symptoms, correct?

Staci Tanouye:
Correct. So physically, if we go into do surgery on someone and we look inside their pelvis and what we can see, what we can see does not always correlate with what they are experiencing. So you can have lots of physical disease present and had be having minimal symptoms or vice versa. You can have less clinical signs at the time of surgery, but lots and lots of symptoms. So disease extent does not always correlate with symptoms. Sometimes it does and we can have a good explanation for it, but sometimes it doesn't. I have certainly seen patients who have been referred to me from their general surgeon because at the time of whatever, whatever surgery that was for something completely different, they went in and saw a pelvis that looked like endometriosis and took pictures and then sent them to me. And I'm like, how are your periods? They're like, oh, fine, no big deal. I'm like okay, but yeah, that has definitely happened we have found endometriosis completely incidentally, which is crazy. It's mind boggling, but yeah, it happens.

Kristyn Hodgdon:
Wow. So given our infertility community, we got a lot of questions about endometriosis and whether it causes infertility. And I was thinking about just different people I know in my life. And one of my friends has debilitating periods but had no trouble, suspects that she has endo but had no trouble conceiving her two children. On the other hand, there are people with zero symptoms in our community who then found out through testing, through IVF, that they had silent endometriosis. So again, all very fascinating and everyone's so different, but what are the statistics with endometriosis and infertility?

Staci Tanouye:
Yeah. So somewhere and again, these statistics vary a little, it's pretty wide range, but somewhere between 20 and 40% of people with endometriosis will have difficulty conceiving or getting pregnant. That's a pretty high percentage when you think about just general medical conditions overall. But that also tells us that the majority of people with endometriosis won't have issues conceiving. So yeah, 20 to 40% of people with endometriosis will have difficulty conceiving. People, even if they do have difficulty conceiving, most people will go on to have normal pregnancies at some point. So to put out a little bit of reassurance there that, yes, it can be difficult, but most people will go on to have normal pregnancies.

Kristyn Hodgdon:
And what about the link between endo and miscarriage?

Staci Tanouye:
Yeah. So this is something that's evolving too, because years and years ago there was, people didn't think there was links between endometriosis and miscarriage or pregnancy complications, etc.. But now we do know that there have been some bigger studies more recently that have said that people with endometriosis who get pregnant do have a slightly increased risk of miscarriage and if they don't have miscarriage, do have an increased risk of some pregnancy complications like preterm labor or small growth of the fetus. And so there are some other connections there that are kind of emerging in this more recent research that we're learning more and more about. That, again, is only going to help us clue into kind of endometriosis as a disease process, because we don't understand why that all occurs either. We have some ideas, but, but yeah, there is some other complications that can be associated with endometriosis.

Kristyn Hodgdon:
Wow. Yeah. I mean, I'm glad that the research is improving. Definitely gives people with endo a lot of, a lot of hope, so hopefully it keeps moving in that direction. So as far as treatment goes, is sort of the gold standard removing it with surgery?

Staci Tanouye:
Correct. So the gold standard for full treatment of endometriosis is generally laparoscopic or advanced laparoscopy, which is robotic surgery, surgery to go in and excise the endometriosis. And that is a gold standard for not only diagnosis but also treatment of the endometriosis. It's the most definitive, but for some people, it may not be permanent. So some people could be just depending on the extent of the excision. But a lot of times it may not be a permanent solution. It could, some people need repetitive treatments or repetitive surgeries in the future. The other options are medical treatments. Now, medical options aren't necessarily meant to solve endometriosis or fully treat endometriosis, as the purpose of medications is to manage endometriosis and manage the symptoms of it. And so it can be something as simple as, like we said, higher dose of pain medications, higher doses of ibuprofen or anti-inflammatories, birth control pills, or there's some more aggressive hormone manipulating medications that are out there. Again, it depends on where the person is, is and their symptoms and their process and in their goals as to what might be most appropriate for them. Some people with mild or minimal disease may be able to just manage symptoms medically and never really need that surgery option, but not everyone can do that. Some people who really want to conceive, who are having trouble, will need surgery. People with more severe symptomatology will need surgery. And so, again, surgery is the gold standard, but there are some medications that we can use to manage symptoms, and how we use those is going to depend person to person.

Kristyn Hodgdon:
That's also individualized. I also wanted to ask about Adenomyosis because I've heard that pop up over the past couple of weeks, and I'm just curious how it differs from endo.

Staci Tanouye:
Yeah. So, so adenomyosis is similar, but different. So endometriosis is where the cells that are, like the endometrial lining of the cells somehow get outside of the uterus and implant within the pelvis and more rarely but possible outside of the pelvis. And then so these cells get stimulated every single month with our cycle and they're not in the uterus. So then when they're getting stimulated to proliferate and then shed, it's doing that outside of the uterus, which causes an inflammatory process and causes even more symptoms and more problems if those similar cells stay within the uterus, but just not in the lining, if they burrow their way inside the uterine wall, so within the muscle of the uterine wall, that's adenomyosis. And so it can have very overlapping symptoms pelvic pain, heavy periods, pain with sex, and a lot of the symptoms can overlap. The, some of the medication treatment options can overlap a little bit, but in terms of definitive diagnosis and definitive treatment, the definitive diagnosis and treatment for Adenomyosis is hysterectomy, whereas that is not necessarily the case with endometriosis. And so obviously we can't do a hysterectomy on someone who would like to conceive, and so we can't do that definitive diagnosis and treatment option until someone is done with their childbearing. Because the only way to then kind of like endometriosis, the only way to definitively diagnose is to actually take out the uterus, give it to the pathologist and the pathologist to look at the specimen and say, yes, this is what's going on here. So up until that point, we can suspect it based on symptoms and based on things like ultrasound or MRI findings, but the only way to definitively diagnose and the only way to definitively treat adenomyosis is hysterectomy.

Kristyn Hodgdon:
Wow. But, so it has to impact fertility then, correct? If it's affecting the uterine wall?

Staci Tanouye:
Yes. That is even more poorly understood than endometriosis. There's some kind of idea that Adenomyosis is traditionally only happens in people after they've had a pregnancy, but we also know that that's not necessarily true now anymore. And so I think Adenomyosis is even less well understood that endometriosis, as difficult as that may be because, yeah.

Kristyn Hodgdon:
Wow. Well, I just want to say that all those of you with endo or Adenomyosis, your symptoms are not in your head.

Staci Tanouye:
Right.

Kristyn Hodgdon:
If something's concerning to you. You know your body better than anyone else. So definitely tell your doctor, provider about it and try to get to the bottom of the issue.

Staci Tanouye:
Yeah, and there's lots of different kind of camps out there of how people view endometriosis and how people view treatment options for endometriosis. And I just want people to realize that we need to keep an open mind about all of those because there's not one cookie cutter way to treat endometriosis because it's such a diverse disease and it affects people so differently. And because people are at different points in their process or in their goals or in their ability to do treatment versus surgery, everyone is very different in this disease process. And so there is not one cookie cutter treatment option because I do hear some people to say that everyone who has endo need surgery. Well, kind of, yes, but mostly no. Like not everyone is the same, and so not everyone has the same symptoms and not everyone has the same goals. So not everyone has the same access to things like surgical options. So we do have to tailor treatment options to the individual where they're at, what their access is, and what they have the ability to do and what they want to do. I have some patients who I'm almost certain to have endometriosis who do not want surgery, like that is the last thing that they want, they do not want to go under the knife, it is terrifying for them and they will do what they have to do to avoid it. And that is valid too, and we have to work within that system. And there are other people who really do need to have expeditious surgery and need to do that. So just keep in mind that this is a diverse disease that has diverse treatment options and people themselves are diverse in what they want and can do.

Kristyn Hodgdon:
Totally. And I meant to ask this earlier, but at what way, if someone was trying to conceive with suspected or confirmed endo, would you refer them to a fertility specialist? Would it be the same as if they didn't have endo, or would that kind of prompt a sooner referral?

Staci Tanouye:
Probably would prompt a sooner referral. Like if we have someone who has a diagnosis of endometriosis, who has tried to get pregnant and is having difficulty whenever they are having a frustrated difficulty with that process that needs to go to surgery to try to fix. So I would suggest an earlier surgery for someone with defined endometriosis. That being said, if we know you have endometriosis, you've probably already had surgery too. If you have suspected endometriosis, and again, it depends on where you are in your process of fertility, depends on your age, it depends on your symptoms, but in general, yes, it probably should prompt a sooner evaluation. And personally, as a general gynecologist, I refer people out for endometriosis surgery because I do believe that the specialists out there are, could do a better surgery than I can. That's not what everyone does, personally, that's just my practice. So if I truly suspect that someone has endometriosis, they're going to my minimally invasive surgical specialist or my reproductive and fertility specialists, that some of them specialize in that as well.

Kristyn Hodgdon:
Right. So I'm going to give it a little bit of a different spin on this question today. How would you rescript how the medical community understands endometriosis rather than other than patients?

Kristyn Hodgdon:
Yeah, that's a good one, that's a good one. I think rescripting it is, we really need to just validate all of that a little bit more. We need to listen to our patients and we need to not assume that what a patient needs or wants. So not only validating someone's pain, but being receptive to what they want to do for treatment and evaluation and that sort of, you know in their process. The other thing I would rescript again is making sure that we're not taking a cookie cutter approach to endometriosis. Once I'm sending, you know, my endometriosis specialist that I sent to their process is probably going to be a little bit different because once I'm sending people to them, that person is in a different point in their process than when they first came to me. And so again, that journey and that process is a little bit different for everyone. In general, yes, we do need to be more aggressive about it. We just do, we need to listen to people, we need to listen to what they're feeling, what they want and make it happen. But still, everyone is different. So yes, we individualize our care.

Kristyn Hodgdon:
Awesome, love it! Well, I learned a lot on this episode, so thank you, Dr. Tanouye. And next time we'll be talking about starting to try.

Staci Tanouye:
Well, that's an exciting topic.

Kristyn Hodgdon:
Yes, I know a lot of people that are listening will be interested in that one. So we'll chat next time. Thank you so much.

Staci Tanouye:
All right. See you soon.

Kristyn Hodgdon:
Thank you for tuning into this episode of Dear Infertility. We hope it left you feeling more educated and empowered about your reproductive and sexual health. Whatever you're currently struggling with, Rescripted is here to hold your hand every step of the way. If you like today's episode and want to stay up to date on our podcast, don't forget to click Subscribe, and to join Rescripted Free Fertility Support Community, head to Rescripted.com.

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