It’s Not Hysteria

When I was 12, my mother got me a book about puberty and she left it on the breakfast room table, so I checked it out. But when I got to the part where they told you to take out a hand mirror and look at your vagina, I was like, no way. I’m closing this book, and I’m never going to do that ever. I consider myself lucky, though, that my research life eventually brought me back to the vagina. 

Not everyone is so lucky. We don’t all get to learn about vaginas in school or from our families or from our research, and this is to our detriment. And today we’re trying to make some progress on that. My guest, Dr. Karen Tang, is here to teach. Karen is a minimally invasive gynecologic surgeon (think: disorders like endometriosis and polycystic ovary syndrome), and she’s also tearing up social media with her women’s health education. She has a book, It’s Not Hysteria: Everything You Need to Know About Your Reproductive Health (but Were Never Told), and it’s exactly what it sounds like — a user manual for anyone with a female reproductive system. 

In this conversation, we discuss how to talk to your doctor and how to make the most of your time with them, the lack of data on women’s health, why Karen feels strongly about reclaiming the word “hysteria” when it comes to health for women, and what it means to study women’s pain.

Women’s health is health, and women’s health is public health, and doing something about women’s pain should be a priority for everyone.

Here are three highlights from the conversation:

What does the word “hysteria” mean in relation to women’s health?

So there’s all of this, the legacy of how women have been seen and how women’s bodies have been treated. In addition to how a lot of people currently feel, they’re like, “Oh, I kind of feel like they’re telling me I’m crazy. Because I’m trying to get help and not getting a whole lot of answers.” 

But I wanted to, with the book, say that there are actual medical conditions that explain a lot of this. You think that it’s from all this anxiety, but it’s actually PCOS or it’s actually endometriosis, it’s perimenopause. So just trying to tease out some of the mythology that has been kind of thrust upon women and women’s health for all of human history. 

Why is it so hard to find data about women’s health issues?

It can invade into your rectum and your bladder and your diaphragm and your lungs, but it’s somehow not treated as seriously [as cancer]. So it’s like, “Well, but that’s just lady pain stuff. It’s just pain.” As opposed to cancer, which is like, “Oh, cancer is real. That’s a serious medical problem.” So you get all the funding, you get all the attention, and then you have more data, like you said, to guide treatment. 

But for women’s health [issues], so much of it, we don’t even know what causes them. So there’s so little data. We don’t even know what causes endometriosis, PCOS, fibroids. So there’s no way to prevent them. We can kind of try and address them and surgically cut out endometriosis or fibroids when they show up, but then they grow right back because we can’t keep them from coming back because we don’t know where they come from. And so we’re sort of playing catch-up.

It really kind of comes down to what people consider an important target for research. That bias that is already there: It’s just lady stuff. If the woman can’t tolerate the symptoms, it’s not that we need to come up with an answer for her. It’s that she just needs to kind of deal with it better. That just pervades the whole system and then you don’t get the data and then it all spirals from there.

What advice would you give people in talking to their doctor?

And that just kind of jumps you ahead, those several minutes of them trying to figure out what’s going on with you, what are your concerns, what are your priorities. You can guide the conversation during your available time to the things that are most important to you to make sure those get addressed.

You should write things down, and bring a friend or a partner to help. Having somebody there to support you, to maybe jump in with questions or things if you maybe forget to ask something that you know is really important to you if you’re going through a procedure or something like that, you just need extra support.

And then what do you do if you’re trying and your doctor is telling you that, “That’s normal, don’t worry about it. There’s nothing to do about that. That’s just lady stuff.” The gaslighting, basically. So I always tell people, whenever you’re seeing a doctor, there should always be a “what’s next?” There should always be something — be it testing, be it trying something else. It could be if that doctor’s not the one to help you with this, a referral to somebody who can.

Full transcript

This transcript was automatically generated and may contain small errors.

So basically a guide to pretty much everything in gynecology from the basics of periods and how pregnancy happens with chapters on individual topics like endometriosis and fibroids and PCOS perimenopause, menopause, which is huge right now, birth control, abortion. So pretty much everything that someone could possibly have had a question about, had an issue with. I think all of us with a vagina or uterus at some point has had some sort of issue in this book.

So I wanted a guide that pretty much from the teen years through all of your life, there’s some value that you can get from this. And basically just having seen people struggling to find this information in a reliable way led to all of these things. So all these educational resources that I throw out there just as you do, just to give the world this information that is lacking.

What is it you saw that you saw that need?

So I noticed that obviously whenever we are talking to patients in the office, in theory, you should be explaining these things to make sure that at the end of the appointment they understand if you’re talking about a surgery, a medication, any sort of medical treatment that the person would be like, “Yeah, no, I totally get that.” But I have seen enough patients who had seen other doctors, not to disparage other doctors, but just I noticed this where they would have a surgery and they’re like, “I don’t even know what part of the body they took out.”

So this would happen with hysterectomies. I’m like, “Did they take out your ovaries?” “I don’t know. I don’t know if they took out my ovaries. I don’t know.” A lot of times they didn’t even know what it was for. “The doctor told me I needed it. I was bleeding a lot.” I was like, “Did you have fibroids? Did you have adenomyosis?” “I don’t know.”

And so it was just so frustrating to see people not have that agency over their own body. And in the course of doing the social media videos, you would also see comments. I actually just got one today. I have a video that went pretty viral about what a hysterectomy looks like. So I showed a super sped up version of here’s your uterus, here are the blood vessels, here’s your rectum. And somebody said, “Well, why do you need to cut a hole in the vagina? You just take it out through the hole that the period blood comes out of.”

And I realized that she thought that there was literally a hole in your abdomen that the blood was just sort of falling out of it. I was like, “Oh no, there’s no hole there. It’s the cervix that’s the opening in your uterus. And the blood comes through there through the vagina.” And so like I said, I never assume. I talk about in the book, my husband is not medical, but he has a PhD in ethics. And so every semester for a while he was teaching a sexual ethics course and he realized you can’t talk about ethics if people don’t understand how things function. So he would give literally an eighth grade level quiz on what are the female parts and what are the male parts? And no one knew. He would do a before and after and literally no one.

These are again legal adults who could become parents at any second and had nobody had any idea like vast deferens, fallopian tube, any of this stuff. And so I would come in and give a little guest lecture on birth control, and there was always some question of how does this work? People would ask, “can you get pregnant with oral sex?” So you would think these are sort of really basic things, but a lot of people were not having this information.

So the title of the book kind of in a joking way, but it’s kind of true. It’s like you should have had this information about your body, how it works. But most people I think, get to adulthood and we’re not told about these things. And I was saying, if you were take me and I would need an eyeball surgery or a foot surgery, I couldn’t name for you right now the bones in the foot. I couldn’t tell you, draw you a picture of the retina and the cornea and the lens and all that stuff. So I don’t assume that everyone knows this stuff about the female reproductive organs, which is important because it causes all sorts of problems and you need to.

And so I think this is often how I think about some of my work around pregnancy is like, I’m not your obstetrician. I want you to have enough information about something like prenatal testing that you can come in and be like, “Okay, I understand. Here are the things that we’re talking about.” We’re closer to being able to have the conversation. And I think if I don’t understand that how the fallopian tubes work or how they connect to the ovaries or don’t connect to the ovaries, it’s very difficult to get to explaining all the other things that you would need because, and at that point people shut down and they get afraid, basically. They get scared and uncomfortable and you know what? Don’t even tell me. Just take out whatever is. If you want to take something out, take it out. And I can’t understand.

So yeah, that’s the whole idea, just like you said, is just give people those tools, kind of catch everybody up so that you can have that language, hit the ground. I tell people, you’re hitting the ground running. You’re not just trying to catch up and being like, “Hold up, can you just just explain what the parts are,” which is so important.

And sort of many questions that I have or things that I think I should share going around in my head, but then when faced with the moment, I’m like, “I love.” I’m not saying this about other people, I’m saying specifically this about me, a specific personal story.

Obviously historically, the word hysteria comes from the word for uterus in Greek. That’s why it’s the same as hysterectomy, hysteria. So back thousands of years ago, they thought that your problems with your health were because your uterus was malfunctioning. And then you get to Freud and hysteria becomes this anxiety manifested as your physical problems.

And now it’s all sort of a combination where if a woman’s complaining about a lot of physical symptoms, pain, hormonal issues, et cetera, and there’s just so many of them, a lot of times it gets assumed, well, there can’t be one medical problem that covers all of those things. So it must be just a lot of anxiety or someone’s a hypochondriac or they’re overreacting.

So there’s all of this, the legacy of how women have been seen and how women’s bodies have been treated. In addition to how a lot of people currently feel, they’re like, “Oh, I kind of feel like they’re telling me I’m crazy. Because I’m trying to get help and not getting a whole lot of answers.” Again, I tell people it’s not to blame. I’m a gynecologist. I’m in the medical system, but the system is flawed as obviously your whole platform is about research and having data, and there’s so little data on women’s health for various reasons. We can talk about that.

So in the absence of what super scientific algorithms, like there are for management of diabetes and heart attacks and cancers that you get sort of the management becomes very like, this expert says this, and this person says this, and it depends on the luck of the draw, which doctor you’re sitting in front of. So it’s obviously a source of great frustration. But I wanted to with the book say that there are actual medical conditions that explain a lot of these mysterious and anxious…. I don’t even know how to say. You think that it’s from all this anxiety, but it’s actually PCOS or it’s actually endometriosis, it’s perimenopause. So just trying to tease out some of the mythology that has been kind of thrust upon women and women’s health for all of human history. Not too much of a heavy lift, but yeah.

And we’re almost always lacking data on what are the paths to treatment and which of them should we think about doing? So diabetes is a good contrast, whereas if you come in, there’s a very specific way we’re going to diagnose this. And then there’s a very specific set of almost decision trees around, “Okay, you’re going to do this and this,” and even if you come in with a more vague set of symptoms, I’m tired, my weight is fluctuating, and it’s clear it’s that. It’s like, “Okay, we’re going to test you for this. We’re going to diagnose you in this way. We’re going to have these different trees of ways that we’re going to treat you.” That feels missing in these women’s health areas. And I have some theories about why, but I’m curious what your theory is about why.

But somebody who has, I always bring it back to endometriosis because that’s my specialty, but it can cause enormous suffering. People can literally miss entire weeks out of every month from their life, from their work, their ability to function. It can cause infertility, it can cause just horrible diarrhea all the time. So absolutely horrific quality of life impact. And it can almost act like a cancer in that it can invade other organs.

It can invade into your rectum and your bladder and your diaphragm and your lungs, but it’s somehow not treated as seriously. So it’s like, “Well, but that’s just lady pain stuff. It’s just pain.” As opposed to cancer, which is like, “Oh, cancer is real. That’s a serious medical problem.” So you get all the funding, you get all the attention, and then you have more data, like you said, to guide treatment. So literally, if you can kind of picture, you mentioned heart attack, stroke, cancers. There’s literally a decision tree. There is a data-driven decision tree about in these situations, this is the optimal evidence-based approach.

But for women’s health, so much of it, we don’t even know what causes them. So there’s so little data. We don’t even know what causes endometriosis, PCOS, fibroids. So there’s no way to prevent them. We can kind of try and address them and surgically cut out endometriosis or fibroids when they show up, but then they grow right back because we can’t keep them from coming back because we don’t know where they come from.

And so we’re sort of playing catch up and then let alone the treatment tree. It’s sort of a little bit of, I call it the throw the spaghetti at the wall and see what sticks approach where we kind of say, “Well, here’s a bunch of different options. Here’s the pluses and minuses and you choose, and if this one doesn’t work, then you try a different thing.” That’s how a lot of people choose birth controls. We strategize a little bit based on what’s in the birth control and the person’s preference, but there’s a little bit of this, “Let’s just see what happens.” We don’t do that with diabetes medicine or heart attacks. We’re like, “Let’s just try and see if it works. And then if it doesn’t, we’ll try a different thing.”

So like I said, it really kind of comes down to what people consider an important target for research. And it all goes back to… So when I was in medical school and training, and every person in OB-GYN has probably had this moment where if you were a good student and you told someone, a mentor or a professor that you were going into OB-GYN, they’ll be like, “Oh, why? You could do something real.

So just that bias that is already there. It’s just lady stuff. If the woman can’t tolerate the symptoms, it’s not that we need to come up with an answer for her. It’s that she just needs to kind of deal with it better. That just pervades the whole system and then you don’t get the data and then it all spirals from there.

And the two things that sort of always strike me from that are one, the reason that this got studied is because the researcher had hyperemesis. That was it. Basically, she had this and she was like, “Oh, my God.”

So part of the reason that we don’t routinely do say local anesthetic on everybody with injections is because it’s more painful than the IUD. So to give the injections of local anesthetic with a needle, you have to do at least three shots, which is a sizable needle and it hurts. So a lot of gynecologists, and this is the way it was presented to me, it was like, “Well, why would you do three shots and then wait and then do the IUD? You could just do the IUD and it’s quicker.”

On TikTok, it was about three years ago now that this sort of blew up on TikTok about pain, and people were explaining how horrible their experiences were. And I think it’s also a little bit of the bias in who is telling their stories. Because I think every gynecologist is like, “Well, we’ve been placing these for years, and most people do just fine.” You do ibuprofen or you place them after childbirth, and it’s much less painful after you have a vaginal delivery then if you are 17, you never had a baby before. So the sense on TikTok that everybody was being tortured was also based on who was making these videos. Obviously it’s just the Yelp reviews is nobody’s going to be like, “It was fine.” It’s either you loved it or you hated it.

Oh, wait. Karen, hang on a second. My producer Tamar is making faces. Tamar, do you want to add something?

So again, this is not to do with the actual science, but this is just sort of the phenomenon of when these topics kind of go viral and things are happening and everyone’s getting very kind of caught up in it. I made a video at the time, they weren’t just talking about IUDs, they were talking about everything colposcopy, which is biopsies to check for abnormal pap smears. And then somebody made a video showing a tenaculum, which is an instrument that’s used sometimes during an IUD insertion, but it’s not the only thing it’s used for. We use it for other things. And they were just like, “Look at this. It looks like it’s torturing people.”

And so again, I’m trying to, from a scientific perspective as a pain expert, I was like, “Oh, actually there are studies that show that local anesthetic doesn’t actually help with those. It actually feels about the same because again, you’re using the needle.” Somebody took a clip of me out of context from that video and said I was saying that IUDs don’t hurt. And it went crazy viral. People were sharing all, “This doctor hates people and they think that IUDs don’t hurt.” I’m like, “I never even said the word IUD. There was no IUD in the video. I was not talking about IUDs,” but it just kind of got caught up in this swirl of anger.

And obviously with some distance, I now see obviously people were angry, they had a bad experience, they felt like they weren’t being listened to, and of course they were upset. But I sort of became a target of everyone’s anger mistakenly. And three years later, I still get occasional DMs like, “You’re that lady who said IUDs aren’t hurt, and how dare you?” And I’m like, “Oh my gosh, I’ve never said that.”

But now that we’re on the other side, what is a good thing that came out of all this is prompting people to talk about this. To say women deserve to know what their options are and the pluses and minuses. A lot of people now are using nitrous oxide, which is not a pain medication. Like laughing gas for the dentist. It actually doesn’t really help with pain, but it makes the whole experience less uncomfortable. So people do prefer it, meaning that they feel more comfortable. They don’t feel that the experience is as anxiety provoking or just negative.

So it’s something I’m looking into. A lot of gynecologists have looked into this, and we’re also kind of being creative with different ways to give local anesthetic. So a lot of us have started putting it into the uterus instead of with a needle with a gel or a liquid with a little syringe to kind of put it through the cervix into the uterus.

So again, it prompted some sort of innovation. People are still doing studies on this, so it’s sort of at the level of like, “Well, we tried some stuff and some people did really well with it,” but again, it sort of was kind of stagnant. There were really no options. We were like, “There’s not amazing options, so we’re going to just ignore it.” So it has been positive in terms of prompting a movement forward in some way. So I do think that that’s really helpful. I and a lot of other gynecologists have changed things like, “Let’s try putting it in a different way so you don’t have the pain of the needle, and maybe it helps numb the uterus a little bit from the inside.” And so I think it’s a good conversation to have, but we have to be careful because a lot of times, like I said, there are so many things, the uproar about metallic compounds and tampons. Did you see that?

So the other danger, the other extreme for women’s health is the tendency to over focus on bad. So both the lack of good data and the overemphasis on bad stuff. So we could talk forever about women’s health initiative and hormone replacement therapy and how people kind of really panicked. And for 20 years we’re like, “Oh, no. Hormone placement therapy is going to give you cancer. And it’s horrible and no one should take it.” Whereas the reality is more of a nuance and less extreme, and we should be individualizing our counseling so that we don’t just sweep away an entire category of medications that can be very helpful.

Whereas I think if we started by telling people, “Given your circumstances this could be painful, and here we recommend you take ibuprofen or just this is going to be painful,” might help a lot in terms of people feeling heard and understood. I think it’s the gas lighting that is almost in some cases, as bad as the-

And again, this is where we say, obviously the book can’t diagnose you with PCOS, but you can say, “I have symptoms of acne, facial hair. My periods are irregular. I’ve had trouble losing weight. I know that those are symptoms of PCOS. Can you tell me about this? What could we do for evaluation? Here are my concerns about fertility, about regulating my periods.”

And that just kind of jumps you ahead, those several minutes of them trying to figure out what’s going on with you, what are your concerns, what are your priorities? So having that idea for yourself and what are your priorities is really big because sometimes the Dr. may latch onto something that you’re like, “Well, actually I’m mostly concerned about this.” You can guide the conversation during your available time to the things that are most important to you to make sure those get addressed.

So that’s sort just the approaching just generally, how do you prep, write things down, bring a friend or a partner, a colleague, whoever to help. If you get caught up or you’re anxious, you’re not quite sure what to say. And I love this when people do this. I’ve had some really great partners come and be like, “Actually, do you remember you wanted to make sure we asked about this?”

And she’s like, “Oh, yeah.” So having somebody there to support you to maybe jump in with questions or things, if you maybe forget to ask something that you know is really important to you if you’re going through a procedure or something like that, you just need extra support. So that’s very helpful. You obviously are entitled to have somebody there with you if you need them.

And then what do you do if you’re trying and your doctor is telling you that, “That’s normal, don’t worry about it. There’s nothing to do about that. That’s just lady stuff.” The gas lighting, basically. So I always tell people whenever you’re seeing a doctor, there should always be a, what’s next? There’s never a no answers for you. There’s no treatments for you. Bye. There should always be something. So be it testing, be it trying something else. It could be if that doctor’s not the one to help you with this, a referral to somebody who can.

So I refer people all the time. I’m like, “I think you need a pelvic physical therapist. I think you need a uro-gynecologist, you need an infertility specialist and reproductive endocrinologist.” There’s always someone. If I’ve reached the end of my ability to provide advice and care, I should be helping you figure out who the next person is who can give you that care. So if you are getting the brick wall, I call it, you can push back. You’d be like, “So what do you think is happening?” If they’re just like, “It’s just normal and your pain or weird bleeding is just fine,” you’d be like, “Well, tell me what do you think is actually going on and what can we do next?” So if it’s something like a physical symptom, can we order imaging studies? Can we order some sort of testing?

There’s not always necessarily a need for testing, like say, hormone testing. In some situations that’s a little bit overutilized, and it’s not super helpful in some situations. So just to say, have that conversation about what testing would they recommend and why or why not. And then again, if they are really not getting anywhere to say, “Can you refer me to someone else? Is there a menopause specialist and endometriosis or pain specialist, fertility specialist, somebody that you can refer me to? So we can go down a path of evaluation and treatment.”

And if you’re really getting absolutely nothing out of them, that’s where you get your second opinions, you crowdsource. That’s one of the beauties of social media is that people, especially with support groups, have kind of banded together to help people find doctors. Geographically, they make their own kind of doctor lists for endometriosis and gender-affirming care, menopause, that sort of thing. For menopause, there’s some professional societies that have directories.

So for menopause now they call it used to be North American Menopause Society, now it’s Menopause Society has a directory for gender-affirming care, WPATH, the World Professional Association of Transgender Health. And then there’s actually, for those, this is a big deal around when Roe V. Wade fell, people who were trying to get sterilizations but were getting turned down because they were child free or they were unmarried. That was a huge problem.

So there’s actually a child free Reddit that maintains a massive surgeon list of both gynecologists and urologists who are willing to do sterilizations if you’re child free. So people have kind of in the absence of, “Let me just go to my local doctor and they’re going to be the one who fixes it all.” People have kind of banded together to create these resources so that people don’t have to reinvent the wheel and struggle to find someone who is a specialist. So ask around in local Facebook groups or something like people will say, “Oh, I had a great experience with so-and-so or This person really comes highly recommended.” So you can reach out to your local community too, try and find someone who will be helping.

Then there’s a sort of set of people in the middle where I think there’s a lot of progress that can be made with asking the right questions in the right way, being prepared in the right way. Maybe that’s not where the conversation would start, but you can make the conversation go there. And then there are certainly people who say, “I explained this and I explained that. I explained it like this. I explained it this, my doctor just kept completely ignoring me. And I felt.”

And then I think that’s where it’s like, it’s probably time to find another provider or a second opinion. Maybe this is not the right fit for you. And I do think it’s actually quite hard to quit your doctor because it’s like quitting the gym. I don’t know. There’s a sort of trust there and it can feel a little bit like maybe it’s me. And I think the frame I’d often give to people is like, maybe it’s you, it’s them. It’s the fit.

So this person may be an amazing doctor and a perfect doctor for someone else, but if they’re not the right doctor for you, then they’re not the right doctor for you. And that’s no shade on them. It’s no shade on you. You just need to find someone who works for the things that you need for whatever is the direction that is the direction of care that’s appropriate for you.

So in the US at least, we are fortunate to have a little bit of a simpler access to additional opinions. Though obviously it’s not easy, but in other systems it’s even more complicated. But just wherever you are, you are entitled to have additional opinions. And the UK, like I said, they can fast track you if any of you listeners are in the UK.

And then also important because people in rural areas may not have a whole lot of people to choose from. There may be one OB-GYN in a county. And so a lot of people now doing telemedicines within the state. So if you don’t have somebody within driving distance, at least maybe you can try and access remote telemedicine for a specialist to consult or something. So there are some things that thank goodness technology has made it a little bit easier. Imagine what this was like before the internet. It was just.

For example, this summer, in her newsletter Hot Flash, Dr. Gillian Goddard wrote her own owner’s manual for vulvas and vaginas, which might just trigger your memories of 7th grade health class, and maybe even teach you something new. Check it out, but probably not at work, at parentdata.org.

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