Heavy Periods and Bleeding Disorders (Episode 356)

Full Transcript: Episode 356

Lisa: Welcome to the Fertility Friday Podcast, your source for information about the Fertility Awareness Method and all things fertility. I’m your host, Lisa Hendrickson-Jack. I’m the author of The Fifth Vital Sign and the Fertility Awareness Mastery Charting Journal. I’m a certified fertility awareness educator and holistic reproductive health practitioner with nearly 20 years of experience teaching women to connect to their fifth vital sign through menstrual cycle charting, balancing hormonal health, and optimizing the menstrual cycle without hormones. I’m outspoken about hormonal birth control and its impact on fertility and overall health because you have the right to know how your body works and how artificial hormones disrupt that natural process. I host live coaching programs to help you achieve optimal fertility and health because it’s important to have healthy menstrual cycles regardless of whether or not you want to have babies. I’m also a wife and mother of two beautiful boys. I know, I know, I’m a busy girl, but I managed to fit it all in. This podcast is designed to empower you to take full control of your cycles, your fertility, and your overall health. And I’m so excited that you’re here with us today.

Lisa: Today’s topic is an extremely important one. In today’s episode we are talking about bleeding disorders, and this is the first time that this topic has been covered on the podcast. We really get into what bleeding disorders are, what the most common ones are, how they affect women specifically, and how they could affect menstrual bleeding, the menstrual cycle, and even pregnancy and labor, since the implications of an undiagnosed bleeding disorder can obviously be very dangerous in those situations. We also talk about some of the challenges women face in having the screening done, having bleeding disorders identified, and how we can make sure that if this is something you’re struggling with, you’re getting the correct diagnosis. So in today’s episode I’m joined by two guests, Dr. Fiona Bethea and Jhon Velasco. Dr. Fiona Bethea is a health scientist on the Bleeding Disorders Team at the Epidemiology and Surveillance Branch of the Division of Blood Disorders, Centers for Disease Control and Prevention. Since 2016 she has worked with community partners to develop evidence-based health promotion and education programs to reduce and prevent complications of bleeding disorders, and she also collaborates in the monitoring and evaluation of the Community Counts Bleeding Disorders Surveillance Program. She received her PhD in Epidemiology at Georgia State University, and also has a Bachelor of Science in Neuroscience and Behavioral Biology. And Jhon Velasco is the Manager of Education and Training at the National Hemophilia Foundation, where he focuses on women with bleeding disorders, the Spanish-speaking community, and mental health. He earned his Master’s in Health Education from Columbia University, where he focused on health education for marginalized communities. Together, Jhon and Fiona have a wealth of information specifically in the area of women and bleeding disorders. So without further ado, let’s jump into today’s episode with Jhon and Fiona.

Lisa: And I’m excited to be here today with Fiona and John. They are here to talk about bleeding disorders, and as we were talking about in the pre-chat before we hit record, this is a topic I’ve never talked about on the podcast before, so I’m really excited to dive into it. It seems kind of strange in retrospect that we haven’t talked about it yet, given that menstrual bleeding is such a huge part of the menstrual cycle. So without further ado, welcome to the show, Fiona and John.

Fiona: Thanks for having us, Lisa.

Jhon: Yeah, thank you, it’s really an honor, really looking forward to it.

Lisa: Oh, I’m so excited to have you. So what we can do is I’d love to give each of you an opportunity to share a little bit about yourself and what drew you to this, because even in our pre-chat you mentioned that a lot of women and healthcare practitioners in the field don’t even know a lot about bleeding disorders. So the question is, how did you get involved?

Fiona: I can jump in first. My name is Fiona Bethea and I’m an epidemiologist with the Centers for Disease Control and Prevention, CDC. I have been working with the bleeding disorders community for over 10 years now, in various capacities, including health communication, our surveillance programs, research, and our cooperative agreements with community-based organizations like the National Hemophilia Foundation. We’ve been doing a lot of work to raise awareness about women with bleeding disorders.

Jhon: Thank you, and thank you, it’s such a pleasure to be here. My name is John, and I am a senior manager of education and training at the National Hemophilia Foundation. My background, very similar to Fiona’s, is based in public health, and I started back in the nineties doing HIV work, at a time when HIV wasn’t seen or treated the way it is now, and the taboos were a lot greater. My journey has traveled through different parts of public health, and when I saw the opportunity to work with the National Hemophilia Foundation it kind of brought my career back full circle, going back to working with people who are really in need of more education and more awareness. So I’m excited to be here to talk about the Better You Know campaign and some of this great work that’s happening, and with the support of you and other organizations we can really make great strides for all communities dealing with bleeding disorders.

Lisa: Well, with that said, let’s just jump right into it. I’d love to start with, what is or what are bleeding disorders, and specifically how would they show up in terms of a woman’s menstrual cycle, how would she know?

Fiona: It’s a big question, a load of questions, so I’ll jump in. Your blood contains a lot of proteins and platelets that work together to form a clot, and that clot is what helps you stop bleeding. Bleeding disorders are a group of conditions where the blood just doesn’t clot properly, and the type of bleeding disorder that a woman or girl might have depends on what protein is missing, or isn’t working the way it should, or isn’t being made in sufficient quantity. So when a woman or girl has a bleeding disorder, it’s not that they’re going to hemorrhage with every cut, but the clot just isn’t going to form as it should, so there’s kind of a slow leak that takes longer to heal, and they bleed more and for longer than a person who doesn’t have a bleeding disorder, although sometimes with trauma this can lead to very heavy, very hard to stop bleeding. In terms of the menstrual cycle, heavy menstrual bleeding is actually the most common symptom of a bleeding disorder. Bleeding disorders aren’t the only cause of heavy menstrual bleeding, but it is the most common symptom. Normal menstrual bleeding usually lasts four to five days, comes about every 28 days, and the amount of blood loss is usually small, about two to three tablespoons. But for a woman who has a bleeding disorder, the endothelial lining that sheds just keeps bleeding, because those clots aren’t forming the way they should. Signs of heavy menstrual bleeding include having to change your pad or tampon every hour for several hours, waking up in the middle of the night to change it, having to wear a tampon and a pad to prevent bleeding onto your clothes, flooding or gushing that limits daily activities like work, school, exercise, or spending time with friends, a period that lasts more than seven to ten days, or blood clots the size of grapes or strawberries. There are other signs of bleeding disorders too, like frequent nosebleeds, bleeding from cuts that lasts more than ten minutes, easy bruising, heavy bleeding or hemorrhaging after childbirth or miscarriage, a history of muscle or joint bleeding, and heavy bleeding after surgery or an outpatient procedure like dental work. One more thing I’ll add is that bleeding disorders are inherited, which means it’s passed down from your mom or dad, so you’re born with it and have it your whole life, even though most women aren’t diagnosed until they start having their menstrual cycle.

Lisa: Okay, there’s a lot in there, I was taking notes. So I have a couple of follow-up questions based on what you said. One of the things I found in the research, and I’m sure you’ve come across this too, is that 80 milliliters of bleeding during the course of a woman’s menstrual cycle is kind of a line that a lot of researchers put in the sand, though I’ve also read papers where researchers didn’t always agree, and some suggested that bleeding more than 60 milliliters should be defined as heavy. So one question that comes out of that is, what would be some of the signs that a woman has a bleeding disorder over other potential causes, like fibroids, polyps, or endometriosis, and maybe you could speak to what types of screening would take place to rule out those other potential causes?

Fiona: One of the great things we have with the Better You Know campaign is a menstrual chart, a validated chart developed with OB-GYNs and the CDC. Charting your period is really important. Periods are something that feel very personal, we talk about cramping and PMS with our girlfriends, but we don’t really talk about the amount of blood loss we have. And when you first start your period you talk to your mom, or your grandma, or your aunt, and if they tell you, oh, we’re just heavy bleeders in our family, this is how it is for us, and if you actually have a bleeding disorder, which is inherited, you could be part of generations of women who’ve been misdiagnosed. So the first step is really charting your period, and we definitely recommend the Better You Know menstrual chart because it’s validated. John, do you want to explain how it works?

Jhon: Absolutely. This can be very complicated because it’s new information for a lot of people. The Better You Know site has some great resources, and it’s available in both English and Spanish, since we’re trying to reach as many community members as possible. Fiona mentioned the menstrual chart, and this is one of the educational materials we have that helps you track how much bleeding you’re experiencing during your period, and for how long, and it also gives it a score. This empowers people to create a chart and look at it, and then when they go to their doctor or provider they can actually say, here’s the evidence, here’s my history. So just to give an example, we give it a score depending on how you’re menstruating, and if your score over the course of your period is more than 100, you’re likely experiencing heavy menstrual bleeding and should see a healthcare provider. It tracks the size and length of your pads and tampons and how heavy the flow is and for how long, so this chart is a really good tool. It’s also available as a PDF that you can download and print out to keep track and to help your doctor understand.

Fiona: I’ll just add that having that dialogue is really important, having something concrete they can see about how much you’re actually bleeding.

Lisa: Well, you’re talking to a really friendly audience here, because most of my longtime listeners are very interested in fertility awareness cycle charting, and many are already charting their cycles, obviously not with this specific chart, but we’ll certainly link to it. After leading classes with women for years and getting into how much they’re bleeding, there’s this interesting spectrum. Plenty of women fall into what I understand to be a healthy pattern of bleeding, but there are women who bleed way more and many don’t even realize that’s a thing, because periods are so personal that you tend to think everyone’s period is like yours. I think if you’re changing your pads and tampons every hour you’d at least consider that’s not how everyone else experiences their period, but for the listeners who do have really heavy bleeding, what would be some of the signs, and also, are there women who bleed really heavy but don’t have bleeding disorders?

Fiona: Yeah, so one in five women actually experience heavy menstrual bleeding, but about one in a hundred women have what’s called von Willebrand disease, so there’s an anticipated 1.6 million women out there who have von Willebrand disease, and many aren’t aware of it, aren’t diagnosed, which is huge, that’s the size of Philadelphia. The first step, and it’s what I think your listeners are already doing, is charting, having something concrete, this is what’s happening on a daily basis during my period, this is how long I’m bleeding, and bringing it to your healthcare provider, typically an OB-GYN. But what we find is that sometimes OB-GYNs, their training really leads them to gynecological causes, so as you mentioned, fibroids, endometriosis, those are the things they’re going to look for, and it’s possible to have endometriosis and a bleeding disorder, you can have both. One of the things we’re doing with the Better You Know campaign is raising awareness among OB-GYNs that von Willebrand disease is something they should be looking for. We have an OB-GYN specific brochure that leads them through the steps, easy to understand, even for women, on the Better You Know website, that explains how to assess a woman for a bleeding disorder specifically and when to refer her to a hematologist, someone who specializes in diagnosing and treating bleeding disorders. I don’t believe the average woman can differentiate this on her own, there are laboratory tests needed to diagnose a bleeding disorder, just as there are tests and exams needed to diagnose something like fibroids.

Jhon: And the other issue is that the lab testing process can be very complex and confusing for women, because your test results can change based on your hormones, so sometimes they have to repeat a test to get accurate information, depending on how you’re feeling and where you are in your menstrual cycle. What we want people to understand is that there is help and there’s great treatment out there, but we need to raise that awareness and make the conversation applicable for all of us to have with our sisters, mothers, and cousins. That’s part of the campaign too, the Better You Know site has a guide to lab testing, which is really empowering because it helps people know what these different tests look like.

Lisa: Well, I really appreciate that, I think you highlight some really important challenges. Whenever it comes to issues of the menstrual cycle, many women already struggle to be taken seriously and to get an accurate diagnosis, so it’s so important for women to know that, in addition to the common things a healthcare practitioner would already be looking for, like fibroids, cancer, infection, or estrogen related hormonal issues, there’s this whole other category that presents a challenge because it’s not necessarily what OB-GYNs are looking for. Even though it’s one in every hundred women, which is still quite prevalent, if it’s not something they’re looking for, even patients who have it probably wouldn’t be identified. You mentioned von Willebrand disease, and I have to admit I wasn’t very familiar with it, though a friend of mine has it in her family, with a few daughters affected, and she’s talked about some of the challenges they face. Could you tell us about von Willebrand disease, and whether it’s one of the most common bleeding disorders, or if there are others as well?

Fiona: Von Willebrand disease is, as I mentioned, related to the proteins and platelets in your blood that come together to form a clot. With von Willebrand disease it affects women and men equally, but women are much more likely to be identified because of the heavy menstrual bleeding. What happens is that the von Willebrand factor protein is either missing, doesn’t function the way it should, or the body doesn’t make enough of it. There are different types of von Willebrand disease, and those types can affect the severity of symptoms. Von Willebrand disease is definitely the most common bleeding disorder that women and girls experience, but women can have hemophilia too, it’s not just men, and there are a number of other, more rare bleeding disorders that women can experience as well.

Lisa: And can you quickly share what hemophilia is for anyone who doesn’t know?

Fiona: Hemophilia is traditionally thought of as a bleeding disorder that affects males, with women as carriers who pass the gene along, since it’s carried on the X chromosome. Males get their X from their mom and their Y from their dad, so with only one X chromosome they show symptoms, while females have two X chromosomes, and it was assumed that one compensates for the other, but we find that’s not always true. Some of the most common symptoms of hemophilia are bleeding into joints, and in males it can also cause intracranial hemorrhage. It’s often diagnosed in infancy, in a severe form, during circumcision, where the bleeding just doesn’t stop.

Lisa: And when you say bleeding into the joints, that’s not something I’m familiar with outside of my wheelhouse, so if someone was experiencing that, what does it actually look like?

Fiona: That’s happening internally, typically in joints like the knees, where you have bone on bone with a kind of sac in the middle that helps with flexibility. With friction, blood pools within that sac, and it can cause the joint to swell up, causing pain and tenderness, and if it happens repeatedly it can cause what we call arthropathy, essentially joint damage in that location.

Lisa: Going back to von Willebrand disease, you mentioned the clotting factor, and that it’s either not being made, not being made correctly, or not functioning correctly. Could you share the different ways this occurs and how it could affect a woman, whether through her menstruation or otherwise, and what’s typically done about it?

Fiona: With von Willebrand disease there are different types. Either you’re not making any of the von Willebrand factor, in which case you’re more likely to have more bleeding because that protein works with others to form the clot, so if it’s not there to help, the clot takes a long time to form and hold, rather than healing and instead breaking apart and re-clotting repeatedly. With type 2, the protein doesn’t function quite the way it should with the platelets and other factor proteins. And there’s another type where you make it, but not quite enough. All of that can affect your symptoms, and like I said, heavy menstrual bleeding is definitely the most common, but especially in children we also see recurrent nosebleeds that go on and on, sometimes requiring a trip to the ER because it just won’t stop even with packing.

Lisa: This is so interesting to me, because growing up there was always someone in class who would get nosebleeds regularly and frequently, so this is bringing back memories, and it’s making me think about what it would be like for a woman having a menstrual period if this isn’t diagnosed and treated. This is something that’s passed down, it’s genetic, it’s not something that could have been solved by eating differently. So when a woman is diagnosed with this, can you share how it’s then treated, what’s done to resolve it and minimize the blood loss?

Fiona: Treatment is going to vary, and we definitely recommend that if you think you’re having the symptoms of a bleeding disorder, talk to your primary care physician or your OB-GYN, and ask for a referral to a hematologist if they can’t identify another cause for your symptoms, since it takes that specialized training both for the diagnostic testing and for treatment, which really depends on which disorder you have and what your symptoms are. It comes full circle to that communication with your doctor and hematologist, because there isn’t a one-size-fits-all treatment for women with bleeding disorders. They may start you off with something, and if it’s not managing your symptoms it’s important to go back and tell them, chart it, take pictures of your bruises, document your nosebleeds, document what you think is a joint bleed, chart your menstrual cycle, and say, I’m not seeing a difference here, what else is out there, because there are different treatments and they may try a few to see what works best. That dialogue is really important, and it’s also important, as John alluded to and as you mentioned, Lisa, to think not just about ourselves as women, but also about our daughters, having this conversation about menstrual bleeding and charting their periods, since bleeding disorders aren’t always passed on from the mom, they may come from the dad, so it’s important to be aware if you think your child is bleeding more than they should during their period.

Lisa: Certainly, I think knowledge is really important and powerful, especially in an area where even if a woman is going to her OB-GYN with full-on symptoms of a bleeding disorder, that OB-GYN may not even be focused on it. I think obviously if a client of mine has excessive bleeding, I suggest she goes straight to her doctor, but for the listener who’s thinking, oh my gosh, this is a genetic bleeding disorder, dietary changes aren’t going to fix this, I’m not suggesting a woman address this on her own, but just so she’d have a sense that there’s hope at the end of the tunnel, could you share some of the ways this is commonly addressed? Just general information, not specific to anyone, but throughout the trajectory of someone’s life, if they have surgeries or give birth, does it stop, does bleeding regulate once someone is caught, working with a hematologist, and getting the treatment and follow-up she needs? Is there hope at the end of the tunnel?

Fiona: Yes, there is effective treatment available to manage the symptoms so it’s not affecting her life. John, do you want to jump in about why it’s so important that women get diagnosed?

Jhon: Lisa, you’re asking all these amazing questions, and I think what I’m hearing, not just from this podcast but from our conversations around the country as we raise awareness and talk to community members, is that we all want a quick fix. I just want to say, I’m not trying to suggest that this is easy or simple, I’m more thinking of an overview, because this is something no one has heard of, and what I know from the work I do is that women are just up against it. If a woman wants to come off the pill, sometimes she’s literally laughed at by her doctor, so if she doesn’t know what specific questions to ask, and if she doesn’t have a sense of how it’s treated or what kind of practitioner to be referred to, then when she’s talking to someone who potentially isn’t aware of this issue and is giving her pushback, saying it’s not a bleeding disorder when she has plenty, she needs to know. That’s why I’m asking these questions.

Lisa: Yeah, you know, I’m glad you brought up the birth control pill, because sometimes what we see and hear a lot are misdiagnoses, because this isn’t on the radar. Those brochures Fiona mentioned are really important for someone to look at themselves and also bring to their providers, because one of the most common things doctors do is just put someone on the pill again, and misdiagnose. What we want people to understand is that when women do get their diagnosis, it brings a sense of relief and empowerment.

Jhon: That’s kind of the streamlined message here, empowerment and validation. We have an anonymous assessment tool online on the Better You Know website that asks a series of questions and raises your awareness, and at the end it won’t give you a diagnosis, but it’ll raise your awareness that you might, or might not, be at risk for having a bleeding disorder. I’d suggest going to the site and taking that assessment tool, since it’s anonymous. What we hear from women after getting their diagnosis, besides the sense of empowerment, is that they now have a reason for why they’re bleeding so much, which they can bring to their doctor to have these conversations and get a diagnosis and start a treatment program. One of the educational materials suggests specific questions you can ask your doctor, like, have you ever treated somebody with a bleeding disorder, which is a great question to start building that dialogue and that sense of empowerment.

Lisa: Well, and so, can a woman’s regular OB have the knowledge to do the testing that’s required, because I can sense the hesitancy to share exactly what testing or treatments are given. So would a regular OB be able to do that testing?

Jhon: No, exactly, they would not, and then the woman should ask her OB for a referral, that’s why the OB-GYN brochure can be a really good tool for a woman whose OB-GYN has gone through their usual workup and isn’t finding any causes. The brochure walks the OB-GYN through what to look for, and if nothing’s coming up, they should ask for a referral to a hematologist, who has that specialty training and also access to laboratories that can do advanced testing that isn’t available in a local OB-GYN’s office, and it takes that training to put different tests together for a diagnosis. Unfortunately, right now, even with a lot of research and advancement in diagnosing women with bleeding disorders over the last 10 to 15 years, it still takes someone highly skilled, it’s not a simple yes or no. Oral contraceptives and female hormones can be one way of treating it, but there are also anti-fibrinolytics, and if you have severe hemophilia there are medications specifically for that, and with von Willebrand disease there are medications as well, like nasal spray and tablets that help your blood clot better. There are treatments available, it just depends on what you have and what’s appropriate, because you don’t want to give yourself clotting factor and then have a blood clot, which is why we don’t want women treating themselves at home, it needs to be under the care of a hematologist. There are a lot of women dealing with embarrassment, depression, and anxiety, missing work, missing recreational activities, difficulties with intimacy, a lot of psychosocial aspects, not to mention potentially life-threatening hemorrhage during childbirth or miscarriage, and on the other end of the scale, women having unnecessary surgeries like hysterectomies because they just want the bleeding to stop. What we really want people to realize is that bleeding disorders are under-recognized as a cause of heavy menstrual bleeding, and if you don’t have another cause, get a referral to a hematologist. There are places called hemophilia treatment centers that treat all bleeding disorders, not just hemophilia, including specialized centers for women, located in every state in the US.

Fiona: And Lisa, the one thing you asked earlier about some of the questions, on the site we mentioned there’s a doctor visit preparation guide that goes over some of those, like, what do you think might be the underlying cause of my symptoms, or how can I manage my pain or symptoms while I’m waiting for a diagnosis, and is there anything I should do to prepare for a lab test. This guide is meant to help people start creating their own questions too, it’s just a guide to have that conversation so we can get better treatment and better care, because it’s not just affecting our physical health but our emotional and mental health too.

Lisa: I’m so glad you’ve created these resources, because it’s so unfortunate how hard it is for women to get adequate care related to menstrual cycle issues, and I’m so glad we’re having this conversation today. All the points you’ve gone over really paint an excellent picture for any woman who’s been tracking her cycles and trying to figure out what’s happening with her excessive bleeding, that going to a hematologist and asking for a referral can be the way to get an answer. I feel like so many women listening to this are thinking, finally, something additional we can do, because women are savvy, they have to be, to get the care they need, and when you have a condition that isn’t common, it can take years to get a diagnosis. I think what the two of you are doing is incredible, and one of the questions I want to ask, and I don’t know if there’s an answer, is why isn’t this a thing? After listening to this episode it’s going to seem so obvious, of course if I have excessive bleeding I could have a bleeding disorder, why didn’t I think of this before? How is it that practitioners specializing in women’s health issues aren’t taught this, is it that it’s just not taught, similar to fertility awareness not being taught?

Jhon: All of the above. These are great questions, and this is why NHF started the Better You Know campaign, targeting women and trying to arm them with as many resources as we can, so they can go to their doctor and say, I looked at my history, I think I have a family history of bleeding disorders, I had a lot of nosebleeds as a kid, I have all these other symptoms and heavy menstrual bleeding, look at my menstrual chart, while simultaneously working with OB-GYN providers. Dentists are also another big one who can identify bleeding disorders, because it’s just not taught in medical school as something that should raise a red flag, but it’s something we believe they should be much more aware of, and we’re working to help with that.

Lisa: Can I ask, when you say it’s not taught in med school, do you mean specifically in relation to women’s menstrual cycles, or at all?

Fiona: I think there’s very little taught in medical schools about bleeding disorders in general, it’s not in depth as it should be. This is a complex issue, from the personal side, the whole thing we hear often, like, oh, I come from a family of bleeders, my grandmother’s a heavy bleeder, but then the bigger issue is that our medical school system isn’t giving the right type of education. We’re also learning a lot more now than we were 10 or 15 years ago, and something worth looking at is the history, there’s so much misdiagnosis and stigma tied to the history of bleeding disorders, especially through the eighties, so many complex layers, but again, it’s about raising awareness, not just for us but for providers, and not just OB-GYNs, but dentists too.

Jhon: That’s like one of those duh moments, but it’s not top of mind. I’ve told Lisa stories about women where it was their gums bleeding that was the impetus for seeking specialized care.

Lisa: Well, the audience can’t see my facial expressions but the two of you can, so I’ll just say this and then we can move on. For all the years I’ve talked about fertility awareness charting and cervical fluid observation, and complained, why don’t they teach this in medical school, at least it’s not life and death, what’s the excuse here? I’m just thinking, since you’re saying they get trained very little in medical school, it’s not even the doctor’s fault, and this is why it’s so important to have these conversations, because you don’t want to go into your doctor’s office pissy, as if they did something wrong, if they’re not trained in a certain area, or the actual training in medical school barely goes over it. You can’t expect your OB to be a hematologist, but this is a big issue, and I appreciate what you’re doing with the handouts and information you’ve put together, because it helps women learn to talk in the doctor’s language, tell them about a family history, tell them about nosebleeds, and basically build a case in a language they’ll understand, so that you get support.

Jhon: That’s exactly it, it really is knowing how to communicate. If you go into your doctor and say, I bleed a lot, they’re not going to understand what that means for you, but doctors speak a different language, so if you go in and say, here are my facts, here’s my data, here’s my evidence with my menstrual chart, with my doctor preparation guide, having thought about your history and your history of symptoms, you’re so much more prepared, and they’re going to be able to listen to you because they’re hearing it in the language they understand.

Lisa: And can I add something for the listeners who might be thinking about their own fertility charts, since when you say chart they might be thinking of a standardized fertility chart. For listeners who chart their menstrual cycles, I feel like it would be helpful to track specific numbers, quantities, and frequency, so how frequently you change your pad, what size pad, how frequently you change your tampon, what size tampon, and whether clots were the size of a grape or a strawberry, and if you track it, it doesn’t have to be perfect, but a lot of women use menstrual cups, or you can use a general guide, like roughly five milliliters of bleeding per regular tampon, just a general gauge of the total amount of bleeding per day. When you bring factual data like that, even if a doctor doesn’t want to look at the fertility chart itself, thinking it’s not relevant, that’s probably the way to talk their language.

Fiona: And also, the Better You Know menstrual chart is validated, so you record how many small, regular, or large tampons or pads you used on a given day, how many points that gives you, how many blood clots you had, and you do it every day. It shows the number of days you had a period, and again, ten days is too long, there’s a cause to that, and it also shows the amount of blood loss. NHF and CDC developed it together, very official, CDC’s logo is on that NHF menstrual chart, which can also help, officially, ladies.

Lisa: That’s so helpful. I’m so happy this conversation is both infuriating me and bringing me joy at the same time.

Fiona: Lisa, can I jump back for one quick second, I just wanted to say bleeding disorders are still considered relatively rare, even for women, so it’s a double-edged sword, we can’t expect medical schools to go over absolutely everything in the depth they need to, that’s why it’s so important to get referred to specialists who do go into depth in these things.

Lisa: I think that’s generally sound advice for pretty much anything, there’s a big difference, not to put anybody down, but different practitioners have different roles. I always use silly examples, but I’m not going to go into McDonald’s and ask them to change my oil, you don’t go to your GP and ask them to have a full-on specialization in hematology, it doesn’t make sense, but the key for the patient is if you have information that there’s such a thing as a hematologist and such a thing as a bleeding disorder, it empowers you to at least ask, so you can get it tested and ruled out. So one last question, or topic that could be a whole podcast on its own, we touched on hormonal birth control, could you tell the audience about some of the potential benefits and challenges if a woman is put on birth control for bleeding, and the diagnosis is missed? Does the birth control pill fix bleeding disorders, or does it mask them? Share some of the benefits and potential problems with that as a solution.

Fiona: Female hormones can definitely be a treatment for bleeding disorders, there’s no cure, so it’s really about treatments that effectively manage your symptoms over your lifetime. Female hormones work by preventing the endometrial lining from shedding as much and from building up and shedding, but if you want to get pregnant, that’s not going to work as a bleeding disorder treatment while also trying to conceive. That’s why it’s important to have a hematologist who can collaborate with your OB-GYN, especially if you’re thinking about getting pregnant, so they can work together for you. We’ve heard horror stories where women came off birth control or stopped their hormone because they wanted to get pregnant, and then bled for 264 days out of the year, which shouldn’t happen, because there are other treatments available. Treatment is going to depend on your disorder and your symptoms. Female hormones can be very useful to help get heavy menstrual bleeding back to a more normal range, losing about two to three tablespoons during a period lasting less than seven days, but if you’re experiencing other symptoms, like nosebleeds or joint bleeds, you need a different or additional treatment.

Jhon: And a treatment that’s actually going to help solve the issue at hand, because as we mentioned earlier, sometimes going on the birth control pill prolongs a misdiagnosis, so it’s just prolonging the amount of time before you get the proper diagnosis and treatment.

Lisa: I thought of a follow-up question. For women who are legitimately on the pill right now because their bleeding was so excessive that they’ve said things like, if I wasn’t on the pill I’d probably be dead, because they bled so much, obviously that’s a situation where a referral to a hematologist would be appropriate, but the question is, is it possible to go to a hematologist while on the pill and get a diagnosis while still taking that contraceptive hormone?

Fiona: It would be important to talk to the hematologist about whether or not it’s right for her to come off the pill before testing, that would be a call the clinician would make. So a woman on the pill could still go to her OB, get a referral to a hematologist, and have that conversation, it would still be worth having, it’s not that she’d need to go off the pill, bleed excessively, and then go, obviously that doesn’t make sense, but I wanted to say that because there are women on the pill for that exact reason who may be listening and need to know what to do, since they can’t just come off the pill because it’s such a big problem for them.

Jhon: Absolutely, and I love the way you phrased that, that’s really important. The message is, we want you to live a healthy life as much as possible, empowering yourself with knowledge and going to see that hematologist, even if you’re on the pill, and they will direct you, look at your history, and think about the different types of tests to run, and then make that decision, but please, please, please go get the care and see the right type of doctors to get the best diagnosis possible.

Lisa: This has been incredibly informative. Before we wrap up, thinking about everything we talked about today, is there any other message or wrap-up information for the women listening that you’d want them to know, before I ask you to share all of the resources?

Fiona: I would just say that as women we tend to really take care of everyone around us and leave little in the tank for our own self-care, so this is one way to really take care of yourself, to get to the cause of what’s causing your symptoms, so you can get treatment. Treatment is out there, it’s available, it’s effective, and if you have a bleeding disorder, it’s better if you get treatment, you’ll feel better, and if you feel better, you’ll have the time and energy to be your best self with everybody else too.

Jhon: That sums it up beautifully. Going back to the name of this initiative, the Better You Know, the better you know about yourself, your symptoms, and your treatment, and knowing that there is better treatment out there, the better care and quality of life you can have. So the better you know, the more you empower yourself, and I’d also encourage people to start having these uncomfortable conversations within their family and friends, because all of us need to be part of this movement to help raise awareness and create better dialogue.

Lisa: This has been incredible. I can just imagine how many women this is going to feel like a breath of fresh air for, like someone’s finally taking this seriously, I always knew something was wrong but didn’t know where to go. On behalf of all of us in the Fertility Friday community, thank you for doing what you do and for spreading the word. You mentioned 1.6 million women, that’s a huge number of women potentially not getting the support they need, so please share the name of the organization and the website where we can go to get more information, and of course I’ll link all of it in the show notes.

Jhon: It’s betteryouknow.org, that’s where you’ll find the assessment tool that raises your awareness about whether you might be at risk, the doctor visit preparation guide, healthcare diaries, lab test logging, menstrual chart logging, we’ve got it all there. There’s also a great brochure called Teen Girl, which I give to friends who are parents, since it explains things from a basic understanding to start having these conversations, and it’s one of our favorites because it goes by quickly and people love it. We also have the lab testing guide we mentioned, and two provider-specific resources, one for providers in general and one specifically for OB-GYNs, all in PDF form, at betteryouknow.org, because the better you know, the better lives you can create and live.

Lisa: Well, I also wanted to ask, alongside the two resources for practitioners, do you have training resources for practitioners regarding bleeding disorders?

Fiona: Yes, we just had three accredited webinars for non-hematology providers, including OB-GYNs, primary care physicians, and dentists, to get accredited and learn more about von Willebrand disease and women with bleeding disorders. And going back to Better You Know, as John said, these resources are available in English and Spanish. There are also ten videos of real women talking about their experiences living with a bleeding disorder, sharing what it was like living with the symptoms and their journey between the onset of symptoms and diagnosis, and the sense of empowerment and freedom they gained from their diagnosis and treatment. That’s another resource I wanted to give a shout out to, because it’s moving.

Lisa: There’s nothing more powerful than hearing the experiences of real women, giving them a voice so we can know what the challenges are really like, and especially beneficial for any women listening who’ve gone through this, to know they’re not alone, and that this can be treated and diagnosed. I really appreciate both of you for being here today and filling our minds with all of this information, and blowing our minds while you’re at it, so thank you so much for being here today.

Fiona: Thank you, and thank you for the work that you’re doing, helping us raise awareness and bringing us along, we truly appreciate your time and wisdom.

Jhon: Yeah, it’s really been our pleasure to talk with you today, Lisa, thank you so much for having us on.

Lisa: Thank you for listening. I hope you enjoyed today’s episode, I certainly found this conversation to be extremely informative, with so many important pieces of information to take away. The first thing to remember is that of course not every woman with heavy menstrual bleeding has a bleeding disorder, but there are specific signs and symptoms that should ultimately be investigated. If you’ve been struggling with excessive bleeding for a long time, if you’ve been put on hormonal birth control because your medical practitioners were concerned about heavy bleeding, and you’ve never been screened for a potential bleeding disorder, this episode contained a ton of practical information for getting that process going. Tracking your menstrual cycle is key, and many of you listening are already doing that, so adding in the specific tracking to outline how much bleeding you have is a great next step. I’d say it’s more important to record as much data as you can rather than get hung up on the specifics, since it’s very hard to measure the exact amount of bleeding to the milliliter, but understanding how to track how many pads you soak, what size, how frequently you’re changing them or your menstrual cup, and having a general idea of how much blood is in a regular versus a super tampon, roughly 5 to 10 or 12 milliliters depending on the size, and tracking that throughout the day is really valuable. It’s also always important to understand what’s normal and what’s not. The research tells us that a normal menstrual period should be anywhere from about 25 milliliters on the low end to about 80 milliliters on the high end, somewhere between one and four to five ounces of bleeding over the whole period, and there are women who bleed less and women who bleed more than that. Some practitioners have gone so far as to say that maybe 60 milliliters should be the top end, but there are certainly many women who bleed much more than that. Just having that general sense, when you’re looking at the menstrual cycle as a vital sign, every vital sign has a range of what we’d consider normal, and when it falls outside of that range it doesn’t tell you exactly what the diagnosis is, but it tells you it’s worth investigating. The frustrating, honest reality is that if you have menstrual cycle related issues, it’s often up to you to push to get the correct diagnosis and the support you need. It’s unfortunate, but it is what it is. You can’t assume that heavy bleeding automatically means a bleeding disorder, just like you can’t assume it’s the worst possible thing, but at the same time any consistently, excessively heavy bleeding does warrant investigation, and that’s a huge takeaway. Even knowing that one out of every hundred women has this condition, if you think about how many millions of people there are across the world, that means there are a lot of women walking around with undiagnosed bleeding disorders, many of whom may have been put on hormonal contraceptives as a way to manage the bleeding. But if it’s undiagnosed and they’re going into pregnancy, labor, delivery, or surgery, there are real concerns with having an undiagnosed bleeding disorder. So certainly check out the resources that Fiona and John talked about, which will be on our show notes page over at fertilityfriday.com/356, along with all the handouts and information they mentioned. I was certainly thrilled to have this conversation and to share it with you, and you could probably hear the fire in my voice, since I’m already fired up about the lack of knowledge and information available for women about fertility awareness and the menstrual cycle, and that’s why I keep talking about this issue and doing my part to raise awareness. To learn about something like bleeding disorders and discover that many healthcare practitioners haven’t necessarily had a lot of training, and aren’t necessarily looking for it, and to know that it could be life-threatening depending on the situation, is jarring and alarming. So if you know of any women who could benefit from hearing today’s episode, friends who’ve talked about their bleeding like it’s a crime scene, or who basically can’t go anywhere because they’re bleeding through multiple pads or tampons, we can’t assume that everyone with heavy bleeding has a disorder, it can be related to a number of different issues, but if you know someone who’s been struggling with this for a long time and hasn’t been able to get to the bottom of it, an assessment is certainly warranted, better safe than sorry. It’s always better to go and get assessed and have it ruled out than to just assume everything is fine. With that said, I hope you have a wonderful week or weekend, whenever you’re tuning into today’s show, and of course, as always, until next time, be well and happy charting.