We get that question: “When was your last period?” Nobody knows why that’s asked.
We don’t always have the language to speak about our periods – let alone menstrual bleeding disorders. So let’s talk about that.
I’m Andrea Gunraj at the Canadian Women’s Foundation.
Welcome to Alright, Now What? A podcast from the Canadian Women’s Foundation. We put an intersectional feminist lens on stories that make you wonder “Why is this still happening?” We explore systemic roots and strategies for change that will move us closer to the goal of gender justice.
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Discrimination based on gender and other factors like race and ability impacts our health in so many ways. We get treated differently depending on our gender in healthcare settings. Our access to relevant health services and options differs wildly depending on our gender. Even the medical research that gets funded and acted upon depends on our gender.
May 28 was International Day of Action for Women’s Health, so for the next few episodes, we’re focusing on gender and health matters we may know bits and pieces of but probably need to learn more about.
Today I’m joined by Natalie Philbert and Dr. Meghan Pike.
Natalie Philbert is Manager of Women’s Programs and Services at Hemophilia Ontario. She is a PhD candidate focusing on delay in diagnosis for menstruators with bleeding disorders. Natalie brings a professional and personal passion to the bleeding disorder community given her own diagnosis. She co-created a website called heroixx.ca, specifically designed for menstruators with bleeding disorders.
Dr. Meghan Pike is a pediatrician and clinical fellow in Pediatric-Hematology Oncology at Dalhousie University/IWK Health Centre . She launched the WeThrive App that can identify adolescents with heavy menstrual bleeding. She is an advocate for free access to menstrual products. Her research interests include patient-reported outcome measures, impacts of cancer treatment on reproductive and menstrual health, and advocacy for menstruators.
I’m Meghan Pike. I’m a pediatrician and a fellow in Pediatric-Hematology and Oncology at the IWK in Halifax. My work over the past few years has mainly been looking at advocating for menstrual equity, so in particular, identifying adolescents with heavy menstrual bleeding, and how it impacts their quality of life as well as advocating for access to menstrual products for anyone who menstruates. And I’m actually going to be working as a pediatric oncologist starting in July and looking at reproductive and menstrual outcomes for pediatric patients who have undergone treatment for malignancy.
You know, I like to be by the ocean, so I moved to Nova Scotia from Winnipeg many years ago to be closer to the ocean. I love kayaking and we’re getting a puppy in a couple weeks, so I think that’s the thing that’s keeping me the most excited at the moment.
My name is Natalie Philbert. I’m the manager of Women’s Services and Programs with Hemophilia Ontario. I am also a PhD candidate, and my focus is on menstruators with bleeding disorders and looking at delay in diagnosis. It’s a particular professional and personal passion for me, as I have VWD Type 1. My whole world is a little bit of eat, sleep, and breathe menstruators with bleeding disorders. In my personal life, some of my passions are certainly family – I have a big, big family, I have five children. We keep pretty busy. I would say that I have an obsession with the Golden Girls, so every single night, that’s what I fall asleep to.
I feel I know very little about bleeding disorders in women. What are the signs and symptoms? What are the gaps in care and diagnosis? And how does it connect with gendered inequalities?
Bleeding disorders mean different things for different people related to symptoms, treatment, and even quality of life. Depending on who you’re talking to, where they are in their diagnosis journey and how that has manifested for them will mean a different story for everybody. Bleeding disorders have been very specific to what is, you know, binary language referred to as male. Traditionally, if you’re talking about women as a universal term, they have been dismissed and ignored in the medical system and in everywhere. You know, there have been so many gaps for menstruators with bleeding disorders in that there’s a delay in diagnosis, there is not very many discussions around treatment, and then there is this ongoing lack of awareness that exists in many areas of a menstruator’s life.
And you’ll hear me using the term menstruators because of course there is this historical piece where women have been ignored and dismissed and not really having a seat at the table around bleeding disorders. But then that doesn’t even encompass anyone who maybe does not identify as a woman, and experiencing similar symptoms or treatment path or whatever that may encompass, someone who maybe has a menstrual period or has that physiology. There’s so many intricacies around that and I know for me at Hemophilia Ontario, we have created, you know, our own department that really tries to address these gendered inequalities for menstruators living with bleeding disorders.
In my practice working with children and adolescents, I often see this intergenerational sort of labeling of normal menstrual bleeding that really isn’t normal. Adolescents who get their first period, and they’re bleeding so much that they’re missing school or they’re no longer playing competitive sports. And when they look to their moms or their aunts or other menstruators in their family, they get the feeling that, “Oh well, I went through that too when I was a teenager and that’s just what it is, right.”
Over the years, I think, like Natalie said, women have been either ignored by healthcare providers because bleeding is normal for a woman, whereas it’s not normal for a man or there’s a lack of recognition of their own menstruation, and actually, you know what, this is heavier than normal, but it’s the only thing my family ever knows . I didn’t realize that it was too heavy, and I think that’s really challenging, especially in families with inherited bleeding disorders. How many times have I diagnosed a bleeding disorder in a family because I’ve met a child who’s had their first period and it’s too heavy. So, that’s been really interesting to me, you know, is meeting these children and then looking at their mom and saying, “By the way, have you ever talked to your own healthcare provider about this?” And sometimes the answer is, “Yes, and they’ve dismissed it.” Or sometimes the answer is, “No, I’ve just always lived like this.” Natalie and I are both really passionate about, you know, how do we empower patients to identify when bleeding may not be normal, but also how do we better educate primary care providers recognizing when a period may actually represent an underlying bleeding disorder.
Everything that Meghan said is so true, and I think that additional layer is that we also don’t talk about menstrual stigma. It’s one of the areas for example, I’m focusing on in my PhD work. When I first started the journey of looking at that and then I went and dug a little deeper, even as someone who has experienced menstruation, I was astonished by the layers of menstrual stigma that continue to exist. We don’t talk to each other about menstruation. We don’t talk to our GPs about menstruation. We don’t talk to our kids or our partners or anybody because it’s just something we experience. It just is what it is and there’s nothing to be talked about, whereas there’s lots to be talked about, but it’s not a welcome conversation at all.
A few years ago, we were running a bit of an awareness campaign where we painted our pinky red to raise awareness for women’s bleeding disorders, and this was a few years ago and my husband painted his pinky. You know, a few people would say, “Oh did your daughter paint your fingernail?” And he said, “No, I’m raising awareness for women’s bleeding disorders,” and they kind of took a step back like, “Ohh ok, we don’t want to talk about this.”
It’s also about, to Meghan’s point, bridging that gap of what’s normal. It’s not normal to struggle with menstrual bleeding, like that’s just not a normal part of it. And it may indicate something else, maybe not, but it may indicate something else. And what we’re trying to really make happen is, is there a little bit more question about that, a little bit more investigation about that and finding out what is feeling like, “Hmm this may not be normal for everyone.”
So menstrual stigma is a real thing. Those of us who menstruate have been taught to view our periods as something to hide or obscure with cute names like “Aunt Flo”, or even something dirty or gross. I’m sure this stigma gets in our way and probably part of the reason why we don’t have the words to share our issues with health providers.
One of the things I see with my patients is that they often don’t bring up their menstrual bleeding to a healthcare provider for a variety of reasons – stigma, embarrassment, shyness, but also because they just don’t think there’s anything that can be done about it. I’m trying to shift the narrative to say there is something that can be done about it, even if we can’t identify the exact reason why your menses are so heavy, which we can’t always, but even if we can’t, there are really effective treatments to help decrease the bleeding. And they’re not all hormonal treatments, some families feel very strongly that they don’t want that, and that’s okay. There’s all kinds of alternatives, and so what I always say to people is, if you’re bleeding so much that you’re missing school or missing work, or there’s things that you want to do that you can’t do because of your menstrual bleeding, that’s a problem. We need to investigate why, but also manage the periods at the same time, and those two aren’t always answered in one visit right, with a healthcare provider, but there are treatments we can start that work, you know, almost right away for some people, that can make a big difference. It’s the recognition of the problem that I have found is the hardest.
Just jumping off of that – from personal experience, I would have rather have been diagnosed from maybe a heavy menstrual period than the way that my diagnosis came, which was from a surgery. Very often, diagnosis happens from a surgery or from an injury. And in my experience, in my opinion, that is not the time to be having to manage this type of diagnosis. I would have preferred maybe having some further investigation around menstrual periods and a discussion about that and maybe a diagnosis surrounding that when I had more time to educate myself, advocate for myself and figure out what are my treatment options if I am in a situation of a surgery or an injury. It all too often comes as a result of that, and then all of a sudden, you’re finding your way trying to figure it out. With there being so little education and so many blocks in the way to find out what to do, that can be a very difficult time to try to do it.
And I, like the Society of Gynecologists in Canada , will say, you know, menstruation is a vital sign and I love that, because how often do we measure vital signs in healthcare, right? Every visit, we’re getting your temp your, you know, oxygen saturation. Your menstrual pattern can tell me so much more about your health than your respiratory rate on that given day. And I actually had a surgeon call me not long ago to say, “I have this patient scheduled for an elective procedure and on my history I picked up that they have heavy periods and I want you to see them before I do this elective procedure” and I said, “Oh thank you, right, thank you for asking about periods in a preoperative visit.” And it should be the standard. And I just was so grateful for that, you know, because it really gave me a chance to intervene, hopefully before that patient has an experience like you did, Natalie, right.
We get that question: “When was your last period?” Nobody knows why that’s asked. Now Meghan, you know that it’s because it’s that vital sign of health, it’s that indicator. You know, the average person does not know why I’m being asked that, but we’re asked it and then guess what happens, we just move on, we have no idea why, we don’t know why we’re asked that we’re not sure what it indicates. There are opportunities to find out a little bit more.
What would you recommend we do to be able to learn more? Any tips and tools to share?
So a few years ago, I released an app called WeThrive and it’s designed for adolescents. It’s made by myself and by a group of adolescents to help identify heavy menstrual bleeding. So I would encourage any teenager that has periods to download and use the app. You can use menstrual tracking or you can fill out something called a Flow Check, which does not require tracking periods. Not everyone likes to do that. It’s a quality-of-life questionnaire that has the ability to identify whether you are someone that meets criteria for heavy menstrual bleeding.
It is designed to be gender neutral actually, so it’s really made for anyone who menstruates, regardless of their identified gender because to me, if you if you have a uterus, you are at risk of having menstrual bleeding, and so you should be able to recognize that. It will also give some tips for how to talk to your healthcare provider about it if you are to be identified as someone who has heavy menstrual bleeding, and it will help link you to clinics in your area that are available on a walk-in basis without an appointment or the need for a family physician.
A lot of adults have asked me about using it and you can use it but tools like the Flow Check are validated for adolescence, so it is a bit different. One of my colleagues that Natalie and I have worked with, Doctor Paula James in Kingston, she created a website called Let’s Talk Period and there is a Self-BAT, Self-Bleeding Assessment Tool, on that website that’s for adults, men and women, but I would encourage anybody to fill that out to see what their sort of bleeding risk is.
But overall, I would say that if you, like I said before, if you have missed out on things in your life that you want to do because of heavy periods, that on its own should be enough to raise a red flag for any healthcare provider. And I really encourage people to say to their healthcare provider, “I’m really worried about my menstrual bleeding, and I want to be tested for a bleeding disorder.” I wish that that was enough, sometimes it is, it’s not always. And the other side of it is what Natalie and I are working on in terms of educating primary care providers about what to do in the case that they have a patient come to them and say, “This is what I’m experiencing, and I need help.”
But I’ve noticed that some of the buzzwords that healthcare providers look for that patients say is, you know: “I bleed so much I can’t go to school; I’m soaking through my product; I’m getting up at night to change my product; changing my product every hour; I’m anemic, you know, because of my heavy periods.” Those are all things that we are trained to listen to. If any of that resonates with you, that’s enough of a reason to talk to your healthcare provider.
I love that you gave a script, Meghan, with which to say to your healthcare provider. Because the thing is, is that the average person, adolescent especially, but even adult, does not know what to say. We do not know what to say to our primary care providers because there is a power imbalance there and we don’t know how to frame it. We feel they know best and if they haven’t brought it up, maybe we shouldn’t bring it up either. If that script doesn’t work and you’re feeling like, “Ohh gosh, you know, this didn’t work.” This is why Hemophilia Ontario exists. Like we are there to help support you and help you in that next step, help you at any point in that journey.
So back to kind of what Meghan said, I think anyone can fill out that Self-BAT at the letstalkperiod.ca website, because you go, it takes under 3 minutes and it just gives you a bleeding score that says to you, you know, “Could this potentially be abnormal bleeding or no?” And then you have something that you can take with you and say, “You know what, I filled this out and it’s showing me an abnormal bleeding score, I’d like to know more.” It doesn’t automatically mean you have a bleeding disorder. It just might give you something else you’d like to look at or present to your primary care provider for some additional screening.
Also, Hemophilia Ontario has all kinds of resources. In the last year we launched a website, called heroixx.ca. So it’s heorixx.ca and it is all for women and menstruators with a bleeding disorder. You don’t even have to have a bleeding disorder to learn more. You can go and find out about your bleeding concerns. It has all of the resources on there. On our homepage, Meghan’s app is there, the Self-BAT is there, and if you do have a bleeding disorder, there’s all kinds of videos, there’s all kinds – like we do podcast, talk series, episodes, we do all kinds of things. So in terms of the “Now what?”, it’s about informing and educating and going out and getting a hold of some of these resources that have traditionally not been available.
The other part I would throw in there is one of the things we do keep hearing is that sometimes people get tired of advocating for themselves in a situation like a medical situation where they are vulnerable, and it’s not a comfortable feeling. That’s the part where Meghan and I discussed what we are working on, in terms of trying to connect with primary care providers about ways to catch those flags that Meghan was talking about, that they are trained to listen and hear. And to actually then give them the information of what can they do next so that they actually have the opportunity to say, “Okay, now I actually know what to do with this information or how to refer or how to assess.” So we’re kind of in the middle of working that out.
Alright, now what? Visit heroixx.ca and download the WeThrive App . They’re packed with great information for anyone who menstruates.
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