Transcription:
FAB Clinic Helps Girls with Painful, Heavy Periods

Tiffany Kaczorowski (Host): Welcome to Inside Pediatrics, a podcast brought to you by Children's Hospital of Alabama in Birmingham. I'm Tiffany Kaczorowski. Today, we're continuing our focus on childhood cancer and blood disorders with a focus on adolescent females. Dr. Christie Bemrich-Stolz is our guest today, and she's an Assistant Professor at UAB, the University of Alabama at Birmingham, and is the Outpatient Clinical Director for the division of Pediatric Hematology and Oncology. So, welcome Dr. Bemrich-Stolz.

Christina Bemrich-Stolz, MD, MSPH (Guest): I'm glad to be here. Thank you.

Host: Today, we're discussing a particular clinic, which you share with Dr. Nefertiti Durant in Adolescent Medicine, and Dr. Hope Wilson also from Hematology and it's called the FAB Clinic or Female Adolescent Bleeding Clinic. And I just want to mention too, that it's considered a Clinic of Excellence by the Foundation for Women and Girls With Blood Disorders. So tell us why the need for focused clinic on adolescent girls with blood disorders.

Dr. Bemrich-Stolz: I think the biggest need is that it's such a large problem. There are a number of young women who have heavy menstrual bleeding and any number of problems related to that. And I think often girls just don't talk about it. It's not something that they want to have conversations with their mom. Certainly not their dad, maybe not even their friends. And they may have a significant problem associated with it. We probably under-diagnose it overall, just because of that. It's not something that people want to come out and have a large conversation about. But we know there's a lot of bad consequences that can come from this heavy menstrual bleeding, both socially and medically. So, we want to be able to identify those patients that we can best help.

Host: I was looking at that website, the Foundation for Women and Girls With Blood Disorders. And they did say at the very outset of it, there are so many undiagnosed and untreated bleeding disorders in females. And like we talked about the other day, some people just think it's a normal part of life because that's what their mother or grandmother went through. And so they just kind of dismiss it, but yet they're in so much discomfort, pain and it changes their life. So, tell me some of the impact that these bleeding disorders can have on the normal life of a teenage girl.

Dr. Bemrich-Stolz: Well, something that when I first started, that I didn't ask enough of is how many days of school are you missing because of your periods, either because of cramps associated with it, or just heavy bleeding that you're having to change your pad or tampon more than every one or two hours, they don't want to ask the teacher to have to go to the bathroom more frequently. They don't want to mess up their clothes and have to change in the middle of class. And so some girls will miss four to five days of school a month related to this, which is not appropriate, especially because we can often do things to be able to help that. I've had girls that were very active when they were premenarchal, before they had their first period. And then because of those heavy periods have stopped doing sports, have stopped doing other activities because they were so limited because of their heavy periods. The heavy periods also can lead to iron deficiency, which can give them a number of symptoms that occur outside of the time of their menses. So, not just when they're bleeding, but having fatigue and exercise intolerance and dizziness and other complaints just related to that iron deficiency because of the blood loss during their periods.

And so in identifying these patients, we want to be able to help improve their quality of life overall. Every girl should be able to go to school every day, they probably don't want to, but that's not my that's not my area. But they shouldn't be limited by their uterus and not being able to go to school because of those problems.

Host: When you and your colleagues discovered, or were really digging into this and you decided to form a clinic, what was, what are the clinic goals? What was the basis of forming this clinic? And of course promoting it and getting the word out there about it?

Dr. Bemrich-Stolz: Absolutely. So, it's an area of interest for me. And so I am, I've done a lot more reading and doing a lot more treatment than some of my other colleagues in this arena. Because of my interest and my expertise in bleeding disorders, working with the Hemophilia Treatment Center, I frequently would get referrals for patients who had heavy menstrual bleeding, recognizing that, that can be something that patients with bleeding disorders have; young women with bleeding disorders have. But in reality, only about a third of young women with heavy menstrual bleeding will eventually be diagnosed with an underlying bleeding disorder. Because I am a Hematologist with an interest in this area, and so treat these patients a little bit more than the average Pediatric Hematologist, but I was frequently running up on the extent of my knowledge. And so frequently would refer these patients to Adolescent Medicine or Gynecology. That's a delay in care for those patients.

They're still suffering. They're still having these heavy periods, having the consequences thereof -

Host: While they're waiting for an additional appointment.

Dr. Bemrich-Stolz: While they're waiting for an additional appointment. And so wanted to find a better way to be able to identify these patients, diagnose them, treat them and get them better, faster. And so a combined clinic allows us to do that. Dr. Durant and her Adolescent Medicine Colleagues have a more in-depth knowledge of treating these menstrual disorders than I do. And so by combining that clinic, I can focus my efforts on identifying underlying bleeding disorders, treating iron deficiency or other complications of those bleeding disorders. While Dr. Durant and Adolescent Medicine can be focused on treating what we can do. Because for a number of patients with bleeding disorders, regardless of the underlying bleeding disorder, the treatments are very similar for what we do with heavy menstrual bleeding in girls without a bleeding disorder. That's frequently birth control pills, Depo-Provera, Implanon, IUDs, some other things.

There are some additional things that are available that can be helpful if we identify a bleeding disorder that we wouldn't necessarily use for someone without it. But until we get to that point until we have that time of diagnosis, we want to make sure that we're doing something quickly to help these young women.

Host: So, you did say it's not just a young women with heavy periods, but also may have a history of blood clotting or anticoagulation?

Dr. Bemrich-Stolz: If you look into the Foundation for Women and Girls with Blood Disorders, you'll notice that it's not just hemophilia or bleeding disorders. They're really trying to address the menstrual complaints and menstrual problems that young women with any blood disorder have. If a patient has had a history of a blood clot, then that patient has some limitations in what treatments they can have for their heavy menstrual bleeding going forward. We know that estrogen is a great medicine in helping to control periods, but it also puts patients at increased risk of blood clots. And so if a patient has a history of a blood clot or has an underlying prothrombotic disorder, we may not want to use estrogen in those patients.

Since that's the most common treatment for heavy menstrual bleeding, we want to make sure that we are still addressing something to try to make it better. Finding the safest next best option for them to be able to control their periods while not increasing their, their risk of blood clots. And so any prothrombotic disorders, history of blood clots, that's a special population that may need special treatment in their menses.

Other young women with blood disorders like sickle cell disease, we know that patients with sickle cell disease may be more at risk of having pain crises related to their menstrual cycles. We also know that those patients are at risk of blood clots. And so we need to be thoughtful about the options for birth control and menstrual suppression in that population. That's going to be different than the average girl who's showing up with heavy periods.

Host: Yeah. So let's delve into that just a little bit. What would make someone eligible for a clinic like this? What takes it to that next level where they really need to seek care from a specialist like you?

Dr. Bemrich-Stolz: So the book answer is if your menses are lasting more than seven days, a week is enough. You shouldn't be bleeding more than that. If you are having to change your pad or your tampon more than every one to two hours, that's a pretty heavy flow. The books will talk about the volume of flow. Nobody's measuring how much blood that they're losing in any period. But we can estimate that by seeing how frequently that you're changing your pad or your tampon, and how saturated it is at those times. If you have clots that are coming, greater than the size of a quarter, that the sign of an underlying bleeding disorder. If you're having to use two products, a tampon and a pad, because you know that you're overflowing, that can be a sign that your flow is heavier than it would be expected.

That being said, some people just have a weird period here and there. And so, it doesn't necessarily mean that is overall problem, but it does mean that it probably makes sense to get that assessed, especially if you have any concerning symptoms. If you have more fatigue, if you're more pale, if you can't do the things that you did before, and if you're missing a lot of school, whether or not you meet any of those criteria, I think that's something that you need to get taken care of and whatever we need to do, whether it's me, Dr. Durant or at somebody else, we need to figure out how to, how to let you live your best life, let you live your FAB life. And so we just need to assess it further at that point.

Host: Okay. I do like the name by the way, FAB taking kind of the negative connotation out of some bleeding disorders and out of those heavy periods. Let's talk about the symptoms, a little bit of iron deficiency. So, that's one thing that you do find in some of these girls that you end up having to treat as well.

Dr. Bemrich-Stolz: And I would say it's not just in women with heavy periods. Women are losing blood once a month for about a week. And so that's putting them at risk of iron deficiency overall, but especially for those women with heavy periods that have significant blood loss with each of their menses, they're more at risk of having iron deficiency. It's very unique to each person, what those symptoms might be. And I have patients who have come in that have been severely anemic requiring blood transfusion, who just said, I didn't feel quite right. I just felt different. And then some patients with completely normal blood counts, but just a mild iron deficiency that's impacting their life significantly. That they're not able to participate in their sports teams, that they're not able to keep up when they're running. The things that I would look out for would be dizziness. If people around you think that you look more pale than normal, if you are having shortness of breath with exercise, if you are just feeling more tired than you have been, maybe lightheaded, and it can be difficult because also teenage years are a time then that every teenager needs more sleep than they needed when they were 10 years old, their lives are very busy. They're doing a lot of things and it's easy to attribute that fatigue to any of those things and it may be what the problem is. But it may be also be that you have iron deficiency that we can treat and do something about. I can't make you go to bed any earlier. I can't take away the extracurricular activities that you're doing, but I can make your iron normal and see if that helps any of your problems.

Host: Okay. We talked a little bit about the goal of this clinic is getting girls back to school, back to the activities that they would like to do. And then some of them are following up after the FAB clinic, they're following up either with you or with Dr. Durant in that Adolescent Medicine Clinic. So talk about that a little bit.

Dr. Bemrich-Stolz: So, one of the advantages of having us both there is that we can try to identify what the underlying problems are. Sometimes it is, if I identify a bleeding disorder, then we need to be more cautious about that. And you're going to spend a lot more time with me moving forward, because we want to make sure that we're teaching you about your bleeding disorder appropriately. We're getting you the resources for your bleeding disorder, potentially referring to other clinics that may be helpful for someone with a known bleeding disorder. And so you may become more my patient overall. Sometimes I am not able to identify an underlying bleeding disorder. It doesn't mean that you're not having a problem. It just means that it's not one that is my area of expertise.

And so if I've looked into everything, if I've done the full evaluation and you're not iron deficient, you don't have another blood disorder. You don't have a bleeding disorder, then Dr. Durant may step in and be following overall more than me. Doesn't mean that I don't care about you. And I'm always available if that should change. And you do have a new bleeding disorder that we need to further assess, but the goal isn't that necessarily that you're, you're coming to FAB every time and seeing all of us, you're seeing the appropriate caregiver for the problem that you're having at the time.

Host: And then, did want to talk a little bit about treatment options. You mentioned them a little bit in the beginning, some oral contraception, and I know some people are a little afraid of this, especially, you know, I've got a 13 year old girl myself. And if anybody were to say, oh, she needs to go on birth control, I would freak out.

Dr. Bemrich-Stolz: I wish that they had just a special aisle for the treating of having heavy menstrual bleeding, but they don't. Many, many of the tools that we have available are tools that also make it difficult for you to become pregnant. And so what I usually say is that we're prescribing hormonal therapy to help your heavy menses, that hormonal therapy makes it hard for you to become pregnant, but it's not my goal to provide birth control, unless you need that.

If that is something that's necessary for your life and what your family would like to do, then we want to make sure that we're providing that as well. So, we want to make sure that I'm not making any suggestions about your daughter and things that she does or doesn't do. I'm trying to help the problem that you've told me about. And for many of these problems, the issue is underlying hormonal imbalance, and we can help correct that and fix that with the hormonal therapy that makes it hard for you to get pregnant, ie birth control pills. Similarly Depo-Provera, that can be a medicine that can stop periods for a number of young women.

And so, also, it makes it hard for you to get pregnant, but that's not where, why we're prescribing it. We're trying to control those heavy periods. If there is an underlying bleeding disorder, then that might be a treatment that we do long-term to try to control menses. But when you're ready to have a family, when you're ready to not be on any medicine that makes it hard to become pregnant; there are other options at that time, they can be more cumbersome and less effective options, which is why we wouldn't want to start with them in the first place. But when you're at a point in your life that you are ready to have a family, that's not ruled out because you have an underlying bleeding disorder or have menstrual disorders. It's just that it's something that we'll need to plan for because we wouldn't plan to stop those medications until you're ready to have a family.

Host: Do you find that some of these young women end up growing out of these heavy, heavy menstrual cycles or is it generally a disorder? Something that they will have to deal with?

Dr. Bemrich-Stolz: If there's not an underlying bleeding disorder, if it's more of a hormonal issue, a, a growth issue, then those issues can get better as they get older. If you have an underlying bleeding disorder that tends to be more lifelong, just like the bleeding disorder is. But like I said, as you go through the lifespan, we may change some of the treatments that we offer or that we recommend based on where you are. When you're 13, I assume and usually mom, will, will back up that you're not seeking pregnancy at that time, but when you move on to adult care, that will likely be a part of your life. And we want to support that at that time. I may not be your doctor, but your doctor at that time would be able to adjust your treatments to make pregnancy an option and make it a safe option providing you the care around the pregnancy to limit bleeding complications in pregnancy and post delivery.

Host: And some of the other treatment options that you and I had talked about were nutrition. And then IUDs, NSAIDs like Motrin, that type of thing.

Dr. Bemrich-Stolz: For iron deficiency, absolutely. I would say that I've not met very many teenagers or young, young women who have a great diet. It's just hard. A lot of the things that you can grab quickly on the go in a busy young woman's life are not necessarily always iron rich foods. And so once we've identified that iron deficiency, we have a number of medical options tto have, but I always recommend a healthy diet. I have a iron rich foods list that I provide.

And depending on the degree of anemia or iron deficiency that a patient has, we may be able to lean in fully on dietary changes. But sometimes the deficiency is so much that we have to add some of those medical options to try to improve things. If a patient, just has the heavy menstrual bleeding, some non-hormonal options that we can look at would be NSAIDs, something like ibuprofen, Motrin, Advil. Those can be tried around the time of the period, right before your period starts and on the period to try to help reduce blood flow. Sometimes it works. Sometimes it doesn't. The advantage is that you don't have to take it every day. You don't have to remember all the time. Most girls have, you know, any sort of premenstrual symptoms that would let them know that, oh, it's about to happen.

I should probably start this medication. It may help with some of the cramps as well, as well as the blood flow. And so if someone is not interested in some of the other options, that's something that we can look at. Another medicine is something called tranexamic acid or Lysteda. And that's another medication that's given during the time of the menses to try to reduce blood flow during the menses. It doesn't help if you're very irregular, but if the biggest problem is that you have very heavy periods, especially ones that are leading to problems with iron deficiency, sometimes we can just reduce that blood flow enough to not have a lot more problems with it.

Host: Can you discuss that a little bit more? One of the most common blood disorders that you're finding in some of these girls?

Dr. Bemrich-Stolz: Well, Von Willebrand's disease is one of the most common blood disorders, bleeding disorders overall. It happens equally between males and females, but especially in childhood before adulthood, most kids aren't having a lot of surgeries for us to know that they're having bleeding problems because many patients with Von Willebrands will only have bleeding in high-risk situations, in dental procedures, in surgeries, significant injuries.

And so if they're just walking around normal, then they may not know anything until they're a little older, they have whatever happens when they're older. But for young women, they have a bleeding challenge once a month, that boys don't have. And so we're able to identify this in young women more frequently than in boys. It's an inherited condition. Not everybody has an inherited Von Willebrand's disease. There are some people that they're the first one in the family that has it. Oftentimes though, probably the entire family has it and they just haven't been identified yet. Another great opportunity through the clinic is that we can, if once we identify a problem in a girl, we can make recommendations to the family based on their symptoms to be further evaluated, to see if they have the same problem as well.

If we're able to identify it, then we can do things in preparation for things like surgeries and other procedures to try to keep them safer in that time. And that may mean giving medications prior to the procedure, other surgical choices, other options. But we only have those, if we can identify them. And so we want to figure that out. And the problem in Von Willebrand's disease, Von Willebrand's factor is a protein in our body that helps our blood clot. The bleeding that we typically see with Von Willebrand's disease, as opposed to something like hemophilia; tends to be in the mucus membranes. So a number of patients will have a history of severe nosebleeds or recurrent nosebleeds, will have had bleeding after a tooth came out or after a dental extraction. And the endometrium is one of those mucous membranes that can have more bleeding than you would expect in patients who have Von Willebrands disease. So, often whenever I meet the young girls in the FAB clinic, I'll go through things that we can see in Von Willebrand's disease and other bleeding disorders. Do you have frequent nosebleeds? Have you had to go to the hospital to have a nosebleed taken care of? Have you had to have nasal cautery? It doesn't necessarily mean that you have a bleeding disorder, but it can be a sign that there's something underlying going on.

Have you had prolonged bleeding after a dental extraction? Sometimes it's even the wisdom teeth, once we're getting into these teenage girls and have you had heavy menstrual bleeding, especially heavy enough to require blood transfusion or resulting in iron deficiency. The other one would be bleeding when you brush your teeth, the gums bleeding when you brush your teeth.

So, those are kind of the questions that I'll ask. It's the questions that I'll ask. And also you could potentially have blood in stool or urine. So, if you come to see me in clinic, I will ask those questions and it will want to try to dig a little deeper to see if that is an underlying bleeding disorder that's leading to those problems.

Host: So let's talk about referring to your clinic and I would say, typically they're talking to their primary care provider, either a pediatrician or a family doctor about this, or possibly even a gynecologist about this, but are you guys open to referrals directly from patients or you prefer to have that relationship with that referring PCP?

Dr. Bemrich-Stolz: I don't want to deny anybody care. And so we are open to anybody who needs the care that they need. I think in general, having a good primary care physician who can care for those things that I in Dr. Durant are not able to, is amazing. And it's important for your overall health. And so ideally you would speak with your primary care doctor and say, you know, I've been having this problem. And I think there's somebody out there who might be able to help you. Can you help me? Can you make a referral to the FAB Clinic at Children's? if you don't have a primary care provider, I recommend that you get one, but we are open to self referrals as well in that case.

Host: Yeah. And I would think, you know, having that medical home with that primary care provider is important and that way you guys can go back and forth and discuss options with them moving forward as that child progresses into their later years, college years, and then eventually transitions.

Dr. Bemrich-Stolz: Absolutely.

Host: So a couple of resources that I wanted to mention. We talked earlier about the Foundation for Women and Girls With Blood Disorders, and there is a website it's www.fwgbd, so Foundation for Women and Girls With Blood Disorders.org. We will post that in the show notes as well. We also have a website at Children's and that's children'sal.org/hemophilia-bleeding-disorders. Again, we'll post both of those in the show notes. Okay. Anything else Dr. Bemrich-Stolz that you wanted to mention? And just some parting words for our listeners out there?

Dr. Bemrich-Stolz: I'd like to thank you for giving me this opportunity. I would like to hopefully, let people know that sometimes there is something that we can, they may have a problem that they may not have identified or really want to talk to anybody about, but there are people out there that can help. And that's our goal. We want to try to help girls not be limited by their menstrual disorders or their menstrual cycles and let them live their best life, their FAB life.

Host: All right. Thank you so much for joining us today.

Dr. Bemrich-Stolz: Thank you so much.

Host: Thanks for listening to Inside Pediatrics. More podcasts like this one can be found at chidren'sal.org/inside pediatrics.