Did Your Doctor Miss Something… or Did Instagram Just Scare You?

Fertility misinformation on Instagram and social media can make patients feel like their doctor missed something important. In this episode, Dr. Mark Amols breaks down fertility fear-mongering, IVF myths, unnecessary fertility testing, and how scary medical advice can turn real concerns into panic.

In this episode of Taco Bout Fertility Tuesday, Dr. Amols explains how patients can tell the difference between helpful fertility education and fear-based marketing. He discusses common examples involving “normal” fertility test results, genetic carrier screening, donor sperm, PGT-A, Down syndrome risk, failed embryo transfers, immune testing, endometriosis, low AMH, fibroids, uterine polyps, sperm DNA fragmentation, and second opinions. The goal is to help fertility patients ask better questions without being scared into unnecessary testing or treatment.

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Join us next Tuesday for more discussions on fertility, where we blend medical expertise with a touch of humor to make complex topics accessible and engaging. Until then, keep the conversation going and remember: understanding your fertility is a journey we're on together.

Transcript

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Today we talk about fertility fear-mongering. When medical advice stops educating patients and starts scaring them. I'm Dr. Mark Amols and this is Taco Bout Fertility Tuesday. The other day I was on Instagram and I saw a post from other fellow colleagues and I noticed that there is something that some of them are doing which is fear-based messaging. And it's becoming a problem in our field and it makes sense because it is a competitive field and people are scared. Being infertile is a very scary thing. Now to be clear, I'm not talking about patients asking questions. I love when patients ask questions. I love when patients advocate for themselves, when they see something and ask about it and when they get second opinions. That is good medical care. What I'm talking about is something different. I'm talking about the social media posts, the quick videos, the scary captions, or sometimes even another medical opinion that makes a patient feel like their doctor ignored something or that maybe their doctor missed something important that put their future baby at risk without giving the full context. And the thing is that context matters a lot. That's because in fertility, a half-truth can create a full panic attack. Fear-mongering. Infertility usually follows a very predictable formula. First, it takes a real medical issue. Second, it removes the nuance of that medical issue. Third, it makes the patient feel like something dangerous was missed. And fourth, it usually points the patient towards more testing, more treatment, or a different provider. And it usually sounds something like, your doctor said everything was normal, but they never really looked. Or something like, if you didn't do this test, your baby could have a genetic problem and get missed. Or something about if your transfer failed, then the doctor must have missed some type of immune thing. My other favorite one is if your AMH is low, you need IVF immediately. Now here's the problem. Many of these statements contain a small piece of truth, but that's why they work. A fertility evaluation can be incomplete. Some conditions are missed, some tests are not done early. Some doctors may not explain things well. And yes, sometimes patients need a deeper workup. But taking the truth and turning it into a panic is not education, that is marketing wearing a stethoscope. One of the more recent ones I saw was a doctor was saying, if your tests were WNL, which stands for within normal limits, it actually meant we never looked. And don't get me wrong, that is very catchy. It grabs your attention. You stop scrolling. And medically it's a problem because WNL does not mean we never looked and it makes it sound like if everything comes back within normal limits, it means the doctor must have missed something. But that is far from the truth. Tests aren't perfect. Even tests can sometimes be wrong. I'll give the example. Your tube can look like it's blocked, but your fallopian tube could be spasming. And so one doctor can tell you that your tube was blocked and they're not wrong. But then when another doctor does it, it's open. Did the first doctor lie? No, the first doctor did have a blocked tube, but the human body's dynamic spasms can make it look blocked. So the right messaging would be, hey, if your tube is blocked, sometimes it can be a spasm and you can just redo the test and find the tube is open. The other type of marketing is your doctor missed something and your tube was open the whole time and you were going down the wrong path. There is some truth and in the statement, but there is not truth that your doctor didn't care or that the doctor missed something or the doctor failed you. And with social media posts like that, it starts to put fear instead of education. Unfortunately, these types of posts sound like the default assumption being your doctor didn't care or that your doctor missed something or they failed you. And that is where fear starts to replace medicine. A better version of the post would be normal. Results are reassuring. But make sure you understand what was actually tested and what was not tested. That's fair, that's educational, that helps the patient ask questions. But when WNL means we never looked, it's designed to make patients afraid. And fear is powerful in fertility because patients are already fearful. When you think about it, fertility patients are very vulnerable to these fear-based messages and for very understandable reasons. First, we're scared because we don't know how long it's going to take to have our baby. We might have been waiting for years. Maybe they picked the wrong doctor, maybe they're doing the wrong treatment, not because someone did something wrong, but it's just not the right treatment for you. There's fears and things such as getting the wrong embryo. There, there's fears in the financial portion of this and most of all, there's this fear that one decision could change everything. And that's why when someone online says your doctor may have missed this, that hits a nerve because every patient has at least questioned that at one time. And that's because we all know people are human, people are not perfect, doctors are not perfect. We all think as patients. What if there's one thing we haven't found yet. And that's a normal question. But Fear-mongering turns that question into blame. Instead of saying, here are some things to consider, it says, this is probably why you failed. And that is a very different message. Years ago, I actually had my own situation like this where I saw a patient and they went through some testing with me and we ended up doing IUIs and they were using donor sperm. And the patient was very frustrated with me after she went to a different doctor and she said I was in danger of having a child with a genetic disease because I didn't do certain testing on her. And what she was talking about is genetic carrier screening. This doctor said, oh my God, how could they do that and not do genetic care screening on you guys before you did these inseminations? But there's a problem. Yes, there's a little truth that genetic carrier screening can prevent genetic diseases. But the thing is, the part she didn't understand and the doctor didn't say was that the sperm donor that she was using had been tested and the donor who was tested had zero recessive genetic diseases to pass along. So even if she did have something because the donor did not, it takes two for these recessive diseases to become a disease. But unfortunately, the fear was already put in her. She thought she dodged the bullet because thank goodness she didn't get pregnant when we did it because she didn't have this testing yet. Now, I'm not upset that the patient had this wrong impression it's going to happen. I understand that people may not always understand things, but the doctor doesn't understand who did that, whether they were doing it intentionally or if they were just not realizing that they weren't explaining it well. They put fear into this patient and that's not fair. It was just as simple to say, hey, you know, we can do some more genetic carrier screening on you in case you decide to use another donor. That way you can know if you have anything that you can pass along. But instead she held on to this thought that, oh my goodness, I almost had a baby with cystic fibrosis, even though she had zero chance of that. So the point is a doctor saying your baby could have a genetic problem because your doctor didn't test you without explaining the context is fear-based counseling. That patient did not leave that conversation more educated. She left more scared. And that is the problem. Another common place I see this is in PGT-A fear, where patients are told that when you're older you have more risk for aneuploidy if you don't do PGT-A, you have a higher chance of having a child with Down syndrome or trisomy 13. And the thing is, technically that is true. Again, there is some small truths here, but by the time everyone gets to age 36, about half their embryos are genetically abnormal. And that sounds scary because it sounds like, oh my goodness, I have a 50% chance of having a baby with a genetic problem. But that's not exactly true because almost all of those embryos would never make it a live birth. So although the embryos are abnormal, the chance of you actually having a baby with a genetically abnormal embryo is not 50%. It is extremely low. So the testing gives you information and helps you get to a baby faster because you may not have as many miscarriages. But the actual drop in having a baby with a genic problem is very small. Let me give you an example. If you were 38 years of age and you do a transfer without doing PGT-A, the chance of having a child with Down syndrome is 1 in 175, which is 0.57%. If you're 42 and do a transfer without doing PGT-A, it's 1 in 64, 1.56%. Now at 38, 60% of your eggs are going to be abnormal. And at 42, 85%. So you can assume, right, that if you don't do PGT-A, the chances of having a child with Down syndrome must be extremely high. But at 38, by doing PGT-A, you do reduce the risk by 3. But remember the chance was 0.57. By doing PGT-A, you lowered it to 0.19%. So yes, it's three times higher than without doing PGT-A, but, but it wasn't that high to begin with. Same at 42, if you don't do PGT-A, risk is 1.56%. And if you do PGT-A, it drops down to 0.19%. That means without PGT-A you have an eight-times higher risk. But that higher risk is 1.56%. So as you can see, it can be fearful, but it's still a very low risk. And this is why the context matters. I see the same type of thing when it comes to failed embryo transfers. They're told that they need to do immunity testing, blood testing for things like blood clotting disorders. This is after just one failed transfer. And the thing is, one failed transfer does not mean something was missed. Embryos are not perfect. Even the most beautiful embryos are not perfect. Today I had a patient who was leaving, who was pregnant. Her best embryos did not work. Her worst embryo, the lowest grade, that we freeze. Now she's pregnant. She's about almost 12 weeks. I know you want a reason and doctors want a reason too, but sometimes the reason is biology. And unfortunately, biology is very rude. And although a failed transfer is heartbreaking, it's not automatically proof that the doctor failed and that you need to check everything. Don't let people scare you into that rabbit hole. Endometriosis is another one. Telling people that they might have endometriosis and that might be the problem is somewhat laughable because yes, if you have infertility, you probably do have endometriosis. In the general population, only 6 to 10% of people have endometriosis. But in fertility patients, well, now you're talking about 25 to 50%. You add some type of chronic pelvic pain or dysmenorrhea, which is painful periods, you're talking around 75%, and that fear sets in. Maybe I have silent endometriosis and that's causing problems. Maybe my doctor missed that. Well, it's not so much your doctor misses it, but to find out if you have it can require surgery and surgery can be dangerous and have complications. Now, it doesn't mean you shouldn't worry about those things. This is where you ask your doctors questions. My point is people shouldn't make people fearful that they have this, that then that becomes all they focus on. Even if you have endometriosis, it doesn't mean you need surgery. It doesn't even mean you need suppression. Not every patient with endometriosis is going to have a failed cycle, but every patient does deserve to have the question considered in the right clinical context. My other favorite one is AMH. I think I see more consults about AMH than any other test. The patient's with a doctor and they tell them your AMH is low, you need IVF immediately, you may go into menopause. And that is absolutely not accurate. Yes, AMH is a marker of ovarian reserve. It's a little bit like how many eggs we'll recruit during stimulation. But it's not a perfect test of egg quality. It really tells us more about quantity than quality. I agree that a low AMH, if you're, let's say 22, is concerning, but still nothing to be fearful for and doesn't mean you have to do IVF. AMH is one piece of the puzzle. It's not the whole puzzle. And yes, if you have a low AMH, see a fertility doctor, but don't let some type of social media post tell you they need IVF now or that your doctor's not being serious enough because your AMH is a little bit low. And just like I'm talking, context matters. Even the things I'm saying, you may have a low AMH and think, oh, my goodness, that's me. I shouldn't worry. Well, context matters. Again, everything you learn, there are questions you need to ask about that because, yes, you may hear terms that you have, but it may not pertain to you. The other area is polyps or fibroids, and that the doctor missed them many times. I have patients who will do an ultrasound with me and I'll point out a fibroid and say, that wasn't there before. And I said, what do you mean? I said, they've never told me about it. And I tell them that sometimes a doctor may not tell you because it doesn't have any effect and they feel like they didn't want to worry you about something. Now, we could make the argument that the doctor should tell you everything regardless if it matters or not, but there are some people who get very nervous when they hear things. And so some doctors will sometimes not tell them things if it's not pertinent. What scares a patient then is now they see the next doctor and they're like, oh, my goodness, I can't believe they didn't tell you about this fibroid that could be preventing your fertility before even doing a test to show that that fibroid or that polyp even matters. Again, a small bit of truth. Yes, it can affect it, but until they do the next workup and look at, they can't truly say it will. And again, what does that do? That creates fear that makes you think, oh, my God, all these years I have been getting pregnant because no one did this. And that may not be true. It gives the impression that the last doctor was negligent, but it's not. It's just that the new doctor hasn't actually looked at the context yet. The last example of fear-mongering I give you, because there's tons of them, is the one where, well, you didn't do all the testing yet. It is true that some people do need some basic testing. Sperm analysis, ovarian reserve, tubal testing. But there are some tests that are more used in certain situations and there are doctors going, they never did this. Well, that could have been the problem, such as DNA fragmentation or a diagnostic laparoscopy. And yes, those tests are important in certain situations, but it can be fearful as a patient, when you hear someone else did tests that you didn't do. In your mind, it seems like everyone should be doing every test. And so if your doctor didn't do that, maybe they missed a piece. But the thing is, there's two types of medicine. There's medicine where you say, let's do every test and then figure things out. And there's medicine where you say, I'm going to do the tests that make the most sense right now. And then if we need to add tests, we will in the future. The point is, don't worry because you didn't do a test that someone else did, because that test might have been needed for them, but may not be needed for you. But if you're worried, ask your doctor. There's nothing wrong asking questions. And that really takes us to the crux of this podcast. What can you do to protect yourself from fear-based advice? Well, there are essentially five questions to ask. The first

question you should ask yourself is: 16:40

does what they said apply to everyone or does it apply to certain patients? If they say everyone should do this test, be careful. Rarely is there an "everyone" test out there. We're all different and we all have different needs. And rarely is there a test for everyone. The second question would be, would the results change the treatment plan? This is probably one of the most important questions because if a test comes back abnormal, what would you do differently? If the answer is unclear, then the test may not really be useful at this moment. I'll give you an example. Let's say they didn't do a DNA fragmentation test, but you're doing IUIs. Well, even if it came back abnormal, it wouldn't change anything because the IUI will still help because the sperm still has to go through the reproductive tract. So the DNA fragmentation won't help you at this time. Sure, you can use ZyMot chips and stuff, but they're really not used for IUIs. So there's a situation where, yes, you didn't do that test, but the results wouldn't even change anything. Now when you go to IVF, that's a different situation. Now you would want to do that DNA fragmentation test. The third question should be, what is the absolute risk? Saying there is a risk is not enough. As I showed you earlier, there was an eight-times higher risk of having a child with Down syndrome by not doing PGT-A. But that eight-times risk still only went to 1.5%, so it was still very, very low. Just because something is a higher risk, you need to know the baseline risk to understand what your risk is. The fourth question I would ask is, is the person explaining limitations? Good medical counseling explains both sides. If someone only explains why a test or treatment is amazing, but never explains the limitations, cost, false positives, the uncertainty or downsides, that is a red flag. And I would be wary of that advice. And then the last thing is the part where internally you need to ask, do I feel informed or do I feel terrified? And this one matters because good education may be serious, it may even be uncomfortable, but it should leave you clearer. Fear mongering leaves you panicked, ashamed, or convinced that you are in danger unless you do something immediately. My point is good fertility counseling should sound like education. Create clearness without fear tactics. I'm not saying that doctors can't miss things. They are human. What I'm saying is don't let social media put you into a fear trap that something was missed just because something didn't work. So I want to be very clear. This episode is not saying never question your doctor. Please question your doctor. Ask why. Ask what was checked and what was not checked and why you did do something or not do something as whether there's another reasonable option or should you get a second opinion if you don't feel comfortable, yes. But also understand that what we're testing is not automatically better medicine. More testing can mean more cost, more delays, more false positives, more anxiety. It could even mean more procedures, which can cause complications. Just because the plan is complicated does not make it better. It might be the most expensive detour and the most emotional, exhausting detour. And unfortunately, infertility time, money and emotional energy are not unlimited. They do matter. So the next time you see a fertility post that says your doctor missed this, or that your normal results don't mean anything, or that you failed because of this or that, pause for a second. There may be truth in it, but ask whether the post is giving you context or just giving you fear. Because fertility patients deserve better than this. They deserve real education. They deserve thoughtful testing. They deserve honest counseling. Point is, infertility fear is easy to sell. Nuance is harder. But nuance is usually where the truth lives. So did your doctor really miss something or did Instagram just scare you? That's the question worth asking. If you've seen these social media posts, you know what I'm talking about. Hopefully this will give you the tools to be able to realize what is the Fear-mongering how and what is a real question that you should probably bring to your doctor. If you like this podcast, recommend to your friends and give us a five star review on your favorite platform to help support us. As always, I greatly appreciate everyone who listens to us and I look forward to talking to you again next week on Taco Bout Fertility Tuesday.