Dr. Bethany Samuelson Bannow sat down with NHF to discuss her co-authored Twitter account, Dr. Period Hackers. Read these Q&As and watch the video to learn more! Follow Dr. Samuelson Bannow on Twitter.
What inspired you to start Dr. Period Hackers?
It really was a joint effort between myself and Marybec Griffin. And we got connected interestingly, through the land of Twitter, through somebody I think she knew in high school who saw a post I put on Twitter.
And so, you know, we've really worked on it together. I think what kind of inspired us, and what inspired me from my perspective is just, I think the lack of knowledge around periods both in menstruating individuals and in doctors, unfortunately, it's not something that we talk about in great detail in medical school.
If you don't go to OB-GYN residency, you may not talk about it or think about it for a very long period of time. And so, we just kind of forget. You know what it's like to have miserable periods or, you know, what sort of defines heavy periods what's normal, what we can do about them. There's all this information that is accessible, but not necessarily uppermost on everybody's mind. Just this idea of, you know, patients will come into my clinic, and they would say they have iron deficiency. Or I'm working them up for a bleeding disorder, and I asked them about their periods and they're reporting these terrible periods to me.
And then just not knowing that it's abnormal, or no doctor had asked them about it before, because they didn't think to ask about it. So, I think just kind of a growing awareness about how little we talk about this subject and how much it impacts the lives of my patients were really kind of what spurred me to start trying to do some more education.
And I had really started in the doctor's space. So, a lot of continuing medical education and grand rounds and things like that, talking about periods that only gets you so far. So, I'm really fortunate that Marybec, Griffin, my kind of co-conspirator and Dr. Period Hackers has all this wonderful public health knowledge, and really kind of working together to try to get both sides, the patient side and the clinician side, getting that education out there. That's really our goal with the whole project.
As a hematologist, what is a common refrain or anecdote you hear from your patients who have periods?
Once you actually start to ask these questions, the flood gates kind of open. Which is actually a really fun part of my job to get to be there and make that connection with a patient who hasn't been asked about it before.
A lot of times what I hear is, and this is what I teach my fellows, just because a patient says her periods are normal, while we absolutely want to respect those patients know their bodies best, they might not actually know what's normal. And so, I'll have a patient come in and she'll say, "oh yeah, my periods are normal. I wear the ultra-tampon and an overnight pad and I change them every 45 minutes."
That is not normal. That is way too much. We need to reign that in and improve quality of life and decreased blood loss and all of that. So, I hear people thinking it's normal when it's not. I hear patients telling me how it interferes with their quality of life. I'll have patients who not only have a pad or tampon with them at all times, but clothing in case they bleed through, because that's a normal occurrence for them. I hear lots of patients saying that their doctors had never asked them about their periods before nobody had ever taught them what a normal period was before.
Unfortunately, sometimes their doctors hadn't listened to them before when they reported symptoms. Those are kind of the most common ones I see. And occasionally, you know, we'll have on the other side of the lack of knowledge. Somebody will come in and be really worried that their periods are too heavy when it's, you know, sort of what we would call a normal period, which doesn't mean that there's not things that we can and should do about it. Certainly, there is, but, that undoing anxiety is, another concern with lack of information that comes up in like.
What do you wish other physicians, non-hematologists, knew about patients who have periods and have a blood or bleeding disorder?
Oh, a lot of things. I wish that they knew what a normal period was to start with because just by knowing what a normal period is, that can kind of put you on the right track in so many ways.
I wish they knew that there more about, the ways to control periods and certainly were not expecting, internists or subspecialists in other fields to be like, popping in birth control. But just to have knowledge that there are things that we can do to control periods and letting patients know that.
I wish doctors felt more comfortable talking to patients about their periods. I think there's a lot of concern it will be awkward for the patient and not an inconsiderable amount of concern that would be awkward for the doctor as well. But you know, in my experience it may just be easier for women to talk to me because I am a woman and, you know, I am in a women's clinic.
So maybe it's a little bit more expected, but patients have been really forthcoming with me about their symptoms. And that's really been important and helpful to me. I wish they knew it doesn't have to be awkward that patients want to talk about it, that they need to talk about it.
I think most doctors know that heavy menstrual bleeding is common in bleeding disorders. I do think that historically bleeding disorder care has been sort of centered on a population that doesn't menstruate because, you know, hemophilia has been kind of the main diagnosis driving a lot of her bleeding disorder centers. And that was traditionally thought to be a man's disease. That's obviously not correct. But you know, it does, it is diagnosed more often in men. Let's put it that way.
I think just kind of an awareness of how frequent heavy menstrual bleeding is in the inpatients with bleeding disorders, what we can do about it and just comfort talking about it, I think are the main things.
What signs or symptoms of periods should someone be aware of if they think they might be at risk of a blood or bleeding disorder?
The classic ones that we talk about are, you know, how frequently are you changing protection, right? So, are you changing your pad or tampon technically more often than every hour. But in my clinic, I say anything more often than every two hours, we should probably do something about it. Particularly with patients being able to use these overnight pads or the ultra tampons, things like that. If patients are having to wake up at night to change their protection or bleeding onto their sheets, if they know they have iron deficiency or a history of iron deficiency, passing clots larger than a size of a quarter is another one.
Those are all common symptoms of heavy menstrual bleeding that you can be on the lookout for a common complication of heavy menstrual bleeding is iron deficiency. Iron deficiency with, or without hemophilia and that can manifest in a number of ways. So, fatigue is the most common symptom, decreased exercise tolerance, sometimes muscle aches, legs, kind of restless legs type symptoms.
Some patients report difficulty focusing kind of a brain fog. Those are symptoms of the iron deficiency side of things. I think it's also important to know that that heavy menstrual bleeding is that it affects up to a third of menstruating individuals and only about 20%. And that's a conservative estimate.
It may even be less, 20% will actually have a bleeding disorder associated with it. It's not just patients with bleeding disorders that are risk of heavy menstrual bleeding and not all patients who have heavy menstrual bleeding will have an underlying bleeding disorder, but that's what it's important to get into the clinic and talk to your doctor about.
And really what we focus on is looking for other symptoms of bleeding what I call "heavy menstrual bleeding plus". So, if you have had a menstrual bleeding plus nosebleeds or plus bleeding after surgery, or plus prolonged bleeding after cuts, those are kind of the things that prompt me to do a workup for a bleeding disorder.
What is period poverty and how does it impact the blood and bleeding disorders community, or the general population?
Such a good question. So, I think the way we most commonly think about period poverty is a lack of access to basically menstrual hygiene products. So, the pads and tampons needed to sort of get through the day and normally function in society. That certainly is a big problem. It doesn't happen as much necessarily in my population for whatever reason. I know that my colleagues have encountered girls who have trouble getting enough menstrual products to go to school. They'll actually have to stay home from school because they don't have menstrual products. And it's definitely an issue throughout the country and obviously throughout the world, and on Dr. Period Hackers, we talk about different aspects of period poverty and the tampon tax and the pink tax and things like that.
That all kind of play together. Another aspect of period poverty that I don't think we talk about nearly enough is its lack of access to education, which I think we tend to think happens maybe outside of the US (United States) maybe somewhere in the developing world where girls don't have as much access to education and schools and things like that.
And maybe there are cultural taboos. It is a very real thing right here in our neighborhoods in the state of Oregon, in the US, and all over the world. Because again, this lack of talking about things. I would argue if a menstruating patient is having heavy menstrual bleeding, she doesn't know that it's heavy bleeding because she wasn't provided with that education. That's its own form of period poverty. And so, if you define it by that, I would say it affects the vast majority of menstruating individuals around the world. Certainly, the aspect of not having enough products is going to be a bigger deal for patients with bleeding disorders who are, have having heavy menstrual bleeding. It's a big problem.
Is there anything else you would like to add?
Thank you for giving this platform to talk about periods. I guess to encourage all patients with periods to feel comfortable talking about them. It is a totally normal body function. It affects half of the population for, you know, 30 or 40 years of life.
It's not something that we should be ashamed about. It's not something that we should feel uncomfortable about. It's certainly not something you should have any hesitation talking to your doctor about. If your doctor's not comfortable talking about it, then you can talk to another doctor or get a referral to a gynecologist.
There's lots of options, but feel comfortable talking about it, you know, pay attention to your body. If you notice that your periods are getting heavier or they're more irregular, things like that, it's good to be aware of that. So again, you can talk to your doctor about it. I think that's the big thing.
Just to be comfortable talking about these things and to arm yourself with knowledge. And we try really hard on doctor period hackers to talk about what is a normal period, what are ways to control periods? What effects can we expect on periods from birth control and things like that. Hopefully, that's a useful resource for folks.
Watch Dr. Bethany Samuelson Bannow's Q&A video here:
